tag:blogger.com,1999:blog-24926279703267200412024-02-08T01:27:50.967+00:00Touch & TickleLiving the life unfamiliar with SMAh0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.comBlogger614125tag:blogger.com,1999:blog-2492627970326720041.post-78043203103882208042020-06-06T15:50:00.004+01:002020-06-14T15:53:55.282+01:00taktsubo heart<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><br /></font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><br /></font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><br /></font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"></span></strong></p><div class="separator" style="clear: both; text-align: center;"><strong><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgwpomkfBtS0zjVcRkYobjEG-wo5b6Yv31Me90APqpMiUodNu4YvhUDCwtSfNmfcQTidRlaqwL3Ti2Ykihy3DDs1dlbyQLRHw2pQ42ldmB2r3khh3e7RM_kTemT8AxBn4poEnO5uqV4tqY/s800/broken-heart-Shutterstock--e1550069171740.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="601" data-original-width="800" height="301" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgwpomkfBtS0zjVcRkYobjEG-wo5b6Yv31Me90APqpMiUodNu4YvhUDCwtSfNmfcQTidRlaqwL3Ti2Ykihy3DDs1dlbyQLRHw2pQ42ldmB2r3khh3e7RM_kTemT8AxBn4poEnO5uqV4tqY/w400-h301/broken-heart-Shutterstock--e1550069171740.jpg" width="400" /></a></strong></div><strong><font face="verdana" size="2"><br /></font></strong><p></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><br /></font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><br /></font></span></strong></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><br /></font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">taktsubo
cardiomyopathy.<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">the syndrome of a <o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">broken heart.<o:p></o:p></font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><br /></font></span></strong></p><p class="MsoNormal"><strong><span style="font-weight: normal; line-height: 107%;"><font face="verdana" size="2">it begins with</font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">a surge of
adrenaline:<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">the heart damaged,<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">ballooning in size
until the point of <o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">so very nearly<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">breaking into a
million pieces.<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">death is </font></span></strong><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">rare - </font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">fortunately:<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">recovery instead<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="font-weight: normal; line-height: 107%;"><font face="verdana" size="2">months </font></span></strong></p><p class="MsoNormal"><strong><span style="font-weight: normal; line-height: 107%;"><font face="verdana" size="2">(or a lifetime)</font></span></strong></p><p class="MsoNormal"><strong><span style="font-weight: normal; line-height: 107%;"><font face="verdana" size="2">long.</font></span></strong></p><p class="MsoNormal"><strong><span style="font-weight: normal; line-height: 107%;"><font face="verdana" size="2">the heart</font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">stunned,<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">failing and<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">recovering<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">synchronously.<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><o:p><font face="verdana" size="2"> </font></o:p></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">10 years of
surviving,<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">of carrying on,</font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">since </font></span></strong><strong><span style="font-weight: normal; line-height: 107%;"><font face="verdana" size="2">the day my</font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">heart<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">fractured.<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">You think that
those days are the worst - <o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">they’re not - <o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">and you realise,</font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">on reflection,</font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">that the worst are
still to come…<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><br /></font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">endless love -</font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">troubled -</font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">but uncertainty<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">and worry<o:p></o:p></font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">and responsibility</font></span></strong></p>
<p class="MsoNormal"><strong><span style="font-weight: normal; line-height: 107%;"><font face="verdana" size="2">and caring.</font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><br /></font></span></strong></p><p class="MsoNormal"><strong><span style="font-weight: normal; line-height: 17.12px;"><font face="verdana" size="2">heart stalling,<o:p></o:p></font></span></strong></p><p class="MsoNormal"><strong><span style="font-weight: normal; line-height: 17.12px;"><font face="verdana" size="2">life changing,<o:p></o:p></font></span></strong></p><p class="MsoNormal"><strong><span style="font-weight: normal; line-height: 17.12px;"><font face="verdana" size="2">relationship breaking:<o:p></o:p></font></span></strong></p><p class="MsoNormal"><strong><span style="font-weight: normal; line-height: 17.12px;"><font face="verdana" size="2">damage done.</font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">physically broken,
<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">emotionally
drained.<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><span> </span><o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">endless healing:<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">stunned,<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">failing and<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">recovering<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">synchronously.<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><o:p><font face="verdana" size="2"> </font></o:p></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">hope gone<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">but<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">heart<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">beating<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">beating<o:p></o:p></font></span></strong></p>
<p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">beating<o:p></o:p></font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><br /></font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><br /></font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2"><br /></font></span></strong></p><p class="MsoNormal"><strong><span style="color: black; font-weight: normal; line-height: 107%;"><font face="verdana" size="2">beating on</font></span></strong></p><br />h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-73080810846082848692020-05-27T16:04:00.003+01:002020-05-27T16:04:53.763+01:00Ten Years<div style="background-color: white; border: 0px; color: #484848; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div style="background-color: white; border: 0px; color: #484848; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5dkQ5GrcEQ8LS-zcshJ6Mytiidj154BaYtFvafP_r5C90TK8H6CSBBZXs6cwGW_e-6KsvdcvDI9_RutgBfI4wRhQGymD-khWJ09W55OAeWUvv_2b27EsJH0CYIc7rTcBy4Os9PY9s61ou/s1600/hummingbird.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" data-original-height="679" data-original-width="655" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5dkQ5GrcEQ8LS-zcshJ6Mytiidj154BaYtFvafP_r5C90TK8H6CSBBZXs6cwGW_e-6KsvdcvDI9_RutgBfI4wRhQGymD-khWJ09W55OAeWUvv_2b27EsJH0CYIc7rTcBy4Os9PY9s61ou/s320/hummingbird.jpg" width="308" /></span></a></div>
<div style="background-color: white; border: 0px; color: #484848; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div style="background-color: white; border: 0px; color: #484848; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div style="background-color: white; border: 0px; color: #484848; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div style="background-color: white; border: 0px; color: #484848; line-height: 1.15; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif; line-height: 1.15;">I am only human.</span></div>
<div style="background-color: white; border: 0px; color: #484848; line-height: 1.15; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif; line-height: 1.15;">It is in our (my) nature to record the passing of time, the momentous occasions, high days and holidays. First in infancy and childhood: we celebrate birthdays, school holidays and Christmas, momentous moments in our calendars of youth. Moving then to independence and adulthood, a period of introspection and hedonism - rather than sentiment - occurs. Perhaps then, if we so choose, we marry and experience the birth of a child or the death of a loved one, while living the emotional roller coaster in between.</span></div>
<div style="background-color: white; border: 0px; color: #484848; line-height: 1.15; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif; line-height: 1.15;">We live two calendars at a time - one measured in time, the other through our emotions.</span></div>
<div style="background-color: white; border: 0px; color: #484848; line-height: 1.15; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif; line-height: 1.15;">The diagnosis of Eilidh with spinal muscular atrophy (SMA), while some might not consider it to be an extreme trauma as such - when compared perhaps to losing a loved one - was indeed a life-changing and emotionally wrenching time in our lives.</span></div>
<div style="background-color: white; border: 0px; color: #484848; line-height: 1.15; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif; line-height: 1.15;">Today marks ten years of living with my daughter's diagnosis. </span></div>
<div style="background-color: white; border: 0px; color: #484848; line-height: 1.15; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif; line-height: 1.15;">I don't think that it's uncommon to feel such profound sadness on diagnosis day. My "anniversary reaction" signals </span><span style="color: #2c2d30; font-family: verdana, sans-serif; line-height: 1.15; text-align: left;">that I am still working on moving through the experience of living (and living well) with this genetic diagnosis - a life-limiting rare disease - and I consider it to be a normal part of the grieving process. </span></div>
<div style="background-color: white; border: 0px; color: #484848; line-height: 1.15; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif; line-height: 1.15;"><span style="color: #2c2d30; line-height: 1.15; text-align: left;">Loss affects each of us differently - I don't, and won't, put a time limit on my </span><a class="inline-links topic-link" href="https://www.psychologytoday.com/gb/basics/grief" style="border-bottom: 1px dashed rgb(153, 153, 153); box-sizing: border-box; color: #2c2d30; line-height: 1.15; text-align: left; text-decoration-line: none; word-break: break-word;" title="Psychology Today looks at grief">grief</a><span style="color: #2c2d30; line-height: 1.15; text-align: left;">. My experience of healing is highly individual and personal: not linear as many still assume, but instead an enduring spiraling of emotion, sometimes upwards, sometimes downwards. I allow the constant - mostly emotional, very occasionally irrational - adjustments to my new normal because to do so means that there is a glimmer of order and sanity in my life.</span></span></div><div style="background-color: white; border: 0px; color: #484848; line-height: 1.15; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-family: verdana, sans-serif; line-height: 1.15;">I cannot lie: I wish <i style="line-height: 1.15;">every day</i> to go back to 26th May 2010 and live a parallel life to the one I'm living now. I can ruminate on the "what ifs..." If Eilidh didn't have SMA who would she be? What would she enjoy? How tall would she be? What would life be like for us as a family of four if she was independent? </span><span style="background-color: transparent; font-family: verdana, sans-serif; line-height: 1.15;">How and where would we be living? </span><span style="background-color: transparent; font-family: verdana, sans-serif; line-height: 1.15;"> </span><span style="font-family: verdana, sans-serif; line-height: 1.15;">Would I have lived a different life? Would I be happier if there was no SMA? And yet time spent ruminating is less time spent living.</span></div><div style="background-color: white; border: 0px; color: #484848; line-height: 1.15; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-family: verdana, sans-serif; line-height: 1.15;">So here's to anniversaries and all the emotions they stir and bring forth; they are what make us human. and they remind us we live on.</span></div><div style="background-color: white; border: 0px; color: #484848; line-height: 1.15; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-family: verdana, sans-serif;"><br /></span></div><div style="background-color: white; border: 0px; color: #484848; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-family: verdana, sans-serif;"><br /></span></div>
<div style="background-color: white; border: 0px; color: #484848; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div style="background-color: white; border: 0px; color: #484848; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">
<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div style="background-color: white; border: 0px; color: #484848; margin-bottom: 24px; outline: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><br /></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-79894973194457319232020-05-17T21:42:00.001+01:002020-05-17T21:42:36.103+01:00The Road to Treatment - The End for Us<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIOrQeOhC92YWaDQSFpMuGvCP-gPrgMh6ijOxbfZM5FsXgyVAy2FlNLzWd4QCeBXoZ05TD0sSVRoEvNV2jeqBE1TQF3qI_Nqew3g7AxGWOsZQz1FFln_cAiLtBewxD9yg7X23_NJ_xumLr/s1600/End_of_the_road-640x427.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="427" data-original-width="640" height="424" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIOrQeOhC92YWaDQSFpMuGvCP-gPrgMh6ijOxbfZM5FsXgyVAy2FlNLzWd4QCeBXoZ05TD0sSVRoEvNV2jeqBE1TQF3qI_Nqew3g7AxGWOsZQz1FFln_cAiLtBewxD9yg7X23_NJ_xumLr/s640/End_of_the_road-640x427.jpg" width="640" /></a></div>
<br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">We came to the end of our Spinraza journey on Thursday...</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">We were aware of the risk following on from scoliosis surgery that, despite a small 1cm squared cage being placed in Eilidh's fusion at L2/L3, there would be no gap to access the intrathecal space to administer the dose, the healing process causing an overgrowth of bone into the void left. </span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">A 50% chance of success, we were told.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">We chose to remain hopeful.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">On the morning of theatre, a CT was able to locate the cage: there, among the artifact of screws and rods, were four tiny dots, the hallowed spot. A slice was identified and the gap marked - X marking the spot - a total height of 7mm.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Positioned on her side, as she had been in CT, she fell asleep under anaesthetic and I left to return to the ward. Not long after, Dr Neuron arrived, apologetic. He hadn't been successful; nor had the anaesthetist. CT had been contacted to try to give them a better idea of where to aim, but no gap had been found and no Spinraza administered...</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">The option to return to the spinal surgeon to recreate a space was quickly mooted and dismissed. Eilidh had recovered well post surgery but had been through enough.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Compassionate access to risdiplam was mentioned prior to the Spinraza appointment. Reflecting on Eilidh's anxiety regarding hospitals and anaesthetics - although much better and mindfully controlled - this was the way forward for us, for Eilidh, and the decision was made to apply for access.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I waited for her to return from theatre, </span><span style="font-family: Verdana, sans-serif;">reeling and alone, wanting nothing more</span><span style="font-family: Verdana, sans-serif;"> to hug her and kiss her.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I knew that Eilidh would be pleased, relieved by the news - no more Spinraza means no more hospital! - while at the same time realising that she had gotten stronger taking it. F</span><span style="font-family: Verdana, sans-serif;">or me, seeing her truncal control and upper limb function decline towards the end of a dose - imagining those baking hands, those dancing legs - the disappointment reigned heavy and tears gathered.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Arriving home, the magnitude of us reaching the end of the journey with Spinraza was realised. Facebook hit me with untimely reminders of memories along the way. From the 24th December 2016 until now, 15th May 2020, life has been a rollercoaster: </span><span style="font-family: Verdana, sans-serif;">the gathering of evidence; the writing of letters; the campaigning locally and nationally; the excitement and hope following approval by the SMC; the time and dedication given; and the emotional and physical energy spent...</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYs7sN3UVaFZHgE6SdaanLvqE-mluk2Y-opJx3EPogWVVjup7EluO5PIus4QY7CCLrfBRI5EDfHHRYd5jfE1tnXOzuXu3uyWV0jZl0OURdr4fEgvPau6ZpEidS00WX9XQuLzwYVpjKPa5F/s1600/spinraza+FDA.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="960" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYs7sN3UVaFZHgE6SdaanLvqE-mluk2Y-opJx3EPogWVVjup7EluO5PIus4QY7CCLrfBRI5EDfHHRYd5jfE1tnXOzuXu3uyWV0jZl0OURdr4fEgvPau6ZpEidS00WX9XQuLzwYVpjKPa5F/s400/spinraza+FDA.jpg" width="400" /></a></div>
<div style="text-align: center;">
<span style="font-family: Verdana, sans-serif;"><span style="font-size: x-small;">24th December 2016</span></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">For it now to be over for Eilidh, for there to be no more Spinraza, is unhoped for and unnerving... but it's not the end, we still have options available and that is an amazing position to be in - I just have to keep telling myself just that. </span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<br />
<br />
<br />
<br />
<br />h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-68435773405841778942020-05-05T12:05:00.000+01:002020-05-16T12:05:53.678+01:00The Road to Treatment: Our Journey<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5ZhILRRfzfoxJdhK6I8knhKAseVBUQPy8W4ytrX6UR1XdL065kSdCjkaqtl44Z_4f2t4USMNcJzrGp4Li2-AvE_msELcudJYD0zHVgR8QyUMKZzFI8Q5oIOzrh0J8KkvGjsOKnwiFAKUt/s1600/IMG_0555.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5ZhILRRfzfoxJdhK6I8knhKAseVBUQPy8W4ytrX6UR1XdL065kSdCjkaqtl44Z_4f2t4USMNcJzrGp4Li2-AvE_msELcudJYD0zHVgR8QyUMKZzFI8Q5oIOzrh0J8KkvGjsOKnwiFAKUt/s320/IMG_0555.jpg" width="320" /></a></div>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">It's been the little things that we've noticed;</span><br />
<span style="font-family: Verdana, sans-serif;">All that makes Eilidh Eilidh.</span><br />
<span style="font-family: Verdana, sans-serif;">The baking, the stirring.</span><br />
<span style="font-family: Verdana, sans-serif;">The feeding of cousins, the mess.</span><br />
<span style="font-family: Verdana, sans-serif;">The make-up, the lipstick.</span><br />
<span style="font-family: Verdana, sans-serif;">The constant chatter, the stronger cough.</span><br />
<span style="font-family: Verdana, sans-serif;">The swimming moves, the splashing abundant.</span><br />
<span style="font-family: Verdana, sans-serif;">The tapping toes, the dancing legs.</span><br />
<span style="font-family: Verdana, sans-serif;">Unseen by others, </span><br />
<span style="font-family: Verdana, sans-serif;">Unrecordable on official scoring,</span><br />
<span style="font-family: Verdana, sans-serif;">But none the less</span><span style="font-family: Verdana, sans-serif;">,</span><br />
<span style="font-family: Verdana, sans-serif;">Improving her enjoyment of the every day:</span><br />
<span style="font-family: Verdana, sans-serif;">A better quality of life.</span><br />
<span style="font-family: Verdana, sans-serif;">It's the little things that make a difference,</span><br />
<span style="font-family: Verdana, sans-serif;">That make Eilidh Eilidh,</span><br />
<span style="font-family: Verdana, sans-serif;">Spinraza and all.</span>h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-78261069008872827082020-01-01T11:17:00.000+00:002020-01-01T11:17:50.629+00:00The Decade Past<br />
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Ten years ago I stood on the edge of something beautiful, something hopeful:</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">A family of four, healthy and happy.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1Y0fGexxnI9T4Hgp1KR56poo8Epmvagnesaz55l6cus5t3HHV1GHWv_y-zfUO1i3D14PV2SiRgtCkGbaoVYc1BIWD-0AcD2xBwrISK-pk0iOsuRAHjIHpRPAIv2g28IDKXXDsq_qAZwz9/s1600/Sheonad+Macfarlane+family+2+Dec+14PRINTSMALL.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" data-original-height="768" data-original-width="505" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1Y0fGexxnI9T4Hgp1KR56poo8Epmvagnesaz55l6cus5t3HHV1GHWv_y-zfUO1i3D14PV2SiRgtCkGbaoVYc1BIWD-0AcD2xBwrISK-pk0iOsuRAHjIHpRPAIv2g28IDKXXDsq_qAZwz9/s400/Sheonad+Macfarlane+family+2+Dec+14PRINTSMALL.jpg" width="262" /></span></a></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">And then life changes in an instant; this decade has been the hardest I have yet encountered, all be it my life a mere five decades long.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">You know the story, it's written here... </span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Until such a time when life became too raw to share...</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Our life imagined wiped away, thwarted by a genetic diagnosis.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Spinal Muscular Atrophy.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Managing the constant juggle of the unfamiliar, navigating the health and social care systems, trying to thrive as a unit - SMA, wheelchair, glass child and all.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Campaigning for treatment, for better co-ordinated care, for respite. Campaigning for others, for Eilidh's future too.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">A life line thrown and hope aplenty: nusinersen. Repeated general anaesthetics, constantly weighing benefit against risk.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Muscles dance and sway, strengthening. Biscuit dough and cake batter stirred and baked, decorated and enjoyed. Hugs tighten around my neck. The constant chatter fills the house, lungs full to the brim. </span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">This is the miracle of treatment never imagined ten years ago. </span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">While we have gained so much from medical advancement, we have lost so much too - those unable to benefit from such advances. My dad, my aunt, friends a plenty, patients comfortable. This is life and no one escapes the inevitability of loss and grief. </span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Sweet. Bitter.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Bittersweet...</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">And now?</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I go into this new decade with great sadness and uncertainty. </span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I am reeling over the sudden and unexpected loss of my dad. Even as an adult, with children of my own, the loss of a parent - my reference point and confidant - shifts life profoundly and indelibly.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">With this heavy heart I move towards the - now imminent - day I have dreaded since SMA was diagnosed; a date for the fusion of a spine curved and twisted, unsupported by weakened muscles, entrusting my child into the care of others... </span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I have no clear vision of the coming days, months and years, but I will be open to the potential that each moment brings. I will write hope on my heart, believing not that life will be better, but that I will heal.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="slideshow-slide-hed" style="background-color: white; box-sizing: border-box; font-family: Neutraface, Arial, sans-serif; font-size: 1.875rem; font-weight: 700; line-height: 1.1; padding: 0.625rem 0.625rem 0.3125rem 0px;">
<br /></div>
<div class="slideshow-slide-dek" style="background-color: white; box-sizing: border-box; line-height: 1.45; margin: 0.625rem 0px 0px;">
<div style="box-sizing: border-box; text-align: center;">
<span style="font-family: Verdana, sans-serif;">"Year's end is neither an end nor a beginning but a going on."</span></div>
<div style="box-sizing: border-box; text-align: center;">
<span style="font-family: Verdana, sans-serif;">Hal Borland</span></div>
</div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<br />
<br />h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-14720013929081028152019-06-11T16:49:00.001+01:002019-06-11T16:49:03.052+01:00Pay Unpaid Carers Fairly<div style="text-align: justify;">
<strong><span style="font-family: Verdana, sans-serif;"><br /></span></strong></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW3vH1C57ul7ohRPPelwFaKvrCXCMUo_-u0dlWorpIeS9OZVJqHvXLB2anuvA3mLm3AixVe8oBcM40m9gr5QCWqX0i9ovtcPDXbuIH7GoyjYs98xsTwDvkDxC2HQB_6mkionO3d9QNm6L4/s1600/carer_shutterstock_110619.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1522" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW3vH1C57ul7ohRPPelwFaKvrCXCMUo_-u0dlWorpIeS9OZVJqHvXLB2anuvA3mLm3AixVe8oBcM40m9gr5QCWqX0i9ovtcPDXbuIH7GoyjYs98xsTwDvkDxC2HQB_6mkionO3d9QNm6L4/s320/carer_shutterstock_110619.jpg" width="304" /></a></div>
<div style="text-align: justify;">
<strong><span style="font-family: Verdana, sans-serif;"><br /></span></strong></div>
<div style="text-align: justify;">
<strong><span style="font-family: Verdana, sans-serif;"><br /></span></strong></div>
<div style="text-align: justify;">
<strong><span style="font-family: Verdana, sans-serif;"><br /></span></strong></div>
<div style="text-align: justify;">
<strong><span style="font-family: Verdana, sans-serif;">Pay the Unpaid Carers; r<em>ecognise their worth before there is no one left to care.</em></span></strong></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I ask the Scottish Government to consider increasing the Carer's Allowance from £66.15 a week to £148.68 a week, equivalent to Statutory Maternity Pay.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I ask the Scottish Government to work towards a more substantial increase from the 39p an hour currently received for a job that is twenty-four hours a day, seven days a week to a living wage of £8.21 an hour for direct hours of care given?</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Recognising the importance of the caring role means recognising the value of the person and seeing them as invaluable. The level of carer’s allowance, as it stands today, doesn’t do this. It’s a meager amount of money for what can be a 24/7 role. These people, these carers should not be classed as being unpaid – that belittle them as individuals and as the skilled workforce that the are – instead raise them high and celebrate the role they perform for society and pay them a meaningful wage – equivalent to maternity pay, or even a living wage. A radical way to show support, but a mere stepping stone in supporting the mental and physical health and well-being of the individual, enabling and empowering them to care for those in need.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<strong><span style="font-family: Verdana, sans-serif;">Why am I Petitioning for Change?</span></strong></div>
<div style="text-align: justify;">
<strong><span style="font-family: Verdana, sans-serif;"><br /></span></strong></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Being a carer is hard. I look back over my daughter’s life and realise this is the hardest job I’ve undertaken. A job that came as unexpected, forced upon me, and yet I do not shy away from the responsibility. This role, this service of mine, is bound by love, the love of my daughter. It is unconditional and born of my womb.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I remember the excitement waiting for her to arrive. The dreams, hopes and aspirations. The love was abundant, the bond already strong as she was placed upon my breast.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">The sleepless nights were short in months. Smiles, finding fingers and toes, rolling and sitting quickly occurring. The milk gave way to sweet potato, carrot and pear, toast and. Walks with the buggy, catching up with friends. Nappies changed on baby changers aplenty. Visits, journeys and holidays easily planned. A life ever changing, growing; those days, weeks and months, once thought to be never-ending, ended… I don’t reflect upon his time with rose-tinted glasses, but rather a sense of reality; I was fortunate to be able to have a baby, but it was damn hard at times.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">39 weeks and maternity leave ends (or so says the Government). Some mothers will return to work. Others will stay at home. A new way of nurturing, growing and living begins. Statutory Maternity Pay ends, an arbitrary 33 weeks of £148.68 a week or 90% of your average weekly pay (before tax) - whichever is less.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Mother becomes Carer.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I can’t remember clearly the moment I became a carer. It wasn’t the moment of diagnosis, nor the first time my daughter wheeled herself around in her wheelchair. It may well have been the first school trip, seeing her pitted against her peers, me on stand-by to lift and move, to dress and attend to her personal cares. I wasn’t her mummy in that moment – mummies (and I apologise for stereotyping; I know that we do so much more…) were working, or at home, or at the gym, or drinking coffee.with friends - I was her carer.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">This role of carer is relentless, day and night. Dressing, moving, lifting, toileting, washing, appointment going, budget controlling, advocating for, can you get this, can you get that, at .So many different roles, so many different functions. The toll can be high – physical, psychological, social, and spiritual hardships common – while the job satisfaction is often low.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Nine years since diagnosis and five years since I recognised that I am a carer - above and beyond that of a caring parent - I applied for Carer’s Allowance. I had given up work, burnt-out and unable to care for others beyond those in my immediate family; I needed to find a way forward for the benefit of my family, achieving a better sense of well-being for all. I was embarrassed to apply for the Allowance: I felt that I was scrounging, that I could and should be able to do better. And yet, there I was, a carer unexpected, asking for help and that help came in the way of £66.15 per week. I was flabbergasted! What a paltry sum of money for someone - anyone! – in a caring role, giving their everything in an unfathomable position. This small allowance is supplemented twice a year – in Scotland – to raise the allowance to that of Jobseekers, but this goes little way to improve the well-being of the carer.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">The roles are not comparable. The role of a carer far can be more difficult than that of a mother with a new baby, it can be relentless, endless and is often thankless. Respite is uncommon and person-sitters (compared with baby-sitters) not easily found. A move to equal pay – carer to maternity - and entitlements is a step in the right direction and one that is long overdue. If a significant increase does not become reality in the foreseeable future, unpaid carers will suffer burn-out, there will be no one left to care, and the cost and burden to health and social care services in Scotland will be phenomenal.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<strong><span style="font-family: Verdana, sans-serif;">Pay the Unpaid Carers; recognise their worth before there is no one left to care.</span></strong></div>
<div style="text-align: justify;">
<strong><span style="font-family: Verdana, sans-serif;"><br /></span></strong></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I am asking Jeane Freeman, MSP and Cabinet Secretary for Health & Sport and the Scottish Government to consider increasing the Carer's Allowance from £66.15 a week to £148.68 a week, equivalent to Statutory Maternity Pay.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<br />
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I ask Jeane Freeman and the Scottish Government to work towards a more substantial increase from the 39p an hour currently received for a job that is twenty-four hours a day, seven days a week to a living wage of £8.21 an hour for direct hours of care given?</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><b>What can you do?</b> </span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Sign my Petition at Change.org and share it with your family, friends and colleagues, raising awareness of the unsustainable position for Carers in Scotland, promoting the recognition of the role and its challenges, and bring about change.</span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif; font-size: x-large;"><b>http://chng.it/CT9DJWFrWF</b></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwhoA2YPtUPnIAkUVqB16fZKkYLnywA3pRJ5Lu0oePH1gdvr41CfELGWxYX3mIx3h0yf2j4J-0H6qfxZuQ83HPmsmOZMBv-BTadzJVvvLHJ3ekcBl47CNy1DDpn-Pr24aTdgfs1pH7__Ar/s1600/There+are+only+four+kinds+of+people+in_Blue.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwhoA2YPtUPnIAkUVqB16fZKkYLnywA3pRJ5Lu0oePH1gdvr41CfELGWxYX3mIx3h0yf2j4J-0H6qfxZuQ83HPmsmOZMBv-BTadzJVvvLHJ3ekcBl47CNy1DDpn-Pr24aTdgfs1pH7__Ar/s640/There+are+only+four+kinds+of+people+in_Blue.jpg" width="640" /></a></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-6134968468373509042019-05-27T16:48:00.001+01:002020-05-27T16:06:06.503+01:00Nine<br />
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwzHwyRhEKhi14uwRxRYCOHu_AFbwh4P-bhzXzTsr6uvoTucAZphRyAZI6NHwmoWhc7vy3G5r0_iyzkYvLtXMrdrSZYnz19P_l3YGFTwdqXsRwaKQviMR1b8cNVo5CMeZwBIsdnA93xBZU/s1600/Nine-603820.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="350" data-original-width="590" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwzHwyRhEKhi14uwRxRYCOHu_AFbwh4P-bhzXzTsr6uvoTucAZphRyAZI6NHwmoWhc7vy3G5r0_iyzkYvLtXMrdrSZYnz19P_l3YGFTwdqXsRwaKQviMR1b8cNVo5CMeZwBIsdnA93xBZU/s1600/Nine-603820.jpg" /></a></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><a href="https://touchandtickle.blogspot.com/p/eilidhs-story.html" target="_blank">9 years have passed</a>.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">The heartache, although changed, <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">Continues on.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">The unimaginable has happened in that time, however;<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">Two treatments are now available.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">No cure but treatment nonetheless</span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">And research continues.</span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><a href="https://touchandtickle.blogspot.com/2019/04/the-road-to-treatment-arriving.html" target="_blank">Eilidh has been lucky to be started on one of them</a>.</span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">There are no miracles offered but <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">Hopefully she won't become any<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">Weaker...<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">Despite research, anecdotes,</span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">Aspirational p</span><span style="font-family: "verdana" , sans-serif;">romises and </span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">H</span><span style="font-family: "verdana" , sans-serif;">ope,</span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">For me, even more so now, <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">I wish there was<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">No<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">SMA.</span><o:p></o:p></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif; font-size: x-small;"><span style="font-family: Verdana, sans-serif;">It's been 4 years since I posted on this day, which will be forever the diagnosis day. If you follow this link </span><a href="https://touchandtickle.blogspot.com/2015/05/five-years-on.html">https://touchandtickle.blogspot.com/2015/05/five-years-on.html</a> you can read more about my feelings over the time since SMA abruptly joined our lives. </span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<br />h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-37356236346624072782019-04-04T10:36:00.001+01:002019-04-04T10:36:22.911+01:00The Road to Treatment: Arriving<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<br />
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">We arrived at our
destination yesterday. Day 0 of Spinraza. It’s been a long time coming and
there’s been quite a fight, but we finally arrived.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzoevNtgaCOehKoIC8xj9bsB5R4vt1P_OsOqWe6U-kMW5ZIDltY7gRKoAOtX2Hv0H7qpB6Oj_d9xgeVNb8A6YKEb7gyRQ7zxyvKR3BtdLMZ-fjqziTEj7a2UOb4glRI7cW6JqnRpWSWcaQ/s1600/first+dose.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1447" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzoevNtgaCOehKoIC8xj9bsB5R4vt1P_OsOqWe6U-kMW5ZIDltY7gRKoAOtX2Hv0H7qpB6Oj_d9xgeVNb8A6YKEb7gyRQ7zxyvKR3BtdLMZ-fjqziTEj7a2UOb4glRI7cW6JqnRpWSWcaQ/s640/first+dose.jpg" width="571" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">Nerves were running high
until the moment the midazolam pre-medication was given. Tears – my tears - fell
as she was put to sleep in the anaesthetic room; entrusting my child to doctors
is onerous for me. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">She was only gone just over
an hour and then she was back, crying and uncomfortable. Gentle kisses were given
in case I broke my fragile daughter while nurses buzzed around checking
observations. As they retreated, we shut the blinds, dimmed the lights, played
her meditation tracks, and willed her back to a restful slumber from which she
would wake afresh and, hopefully, more comfortable.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">I saw the bruises and gauze
on her hands – cannulation had been difficult. The betadine wash on her back
with small puncture sites noted below the plaster. Locating an intervertebral
space had been almost mission impossible – which we knew might be the case
given Eilidh’s progressing scoliosis – the needle striking bone either side of
the space. Ultrasound had been used to try and guide them, and then, on their
last attempt – with some pushing and pulling and manoeuvring of Eilidh’s body,
a window opened and five millilitres of nusinersen was injected into the
intrathecal space. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"><br /></span></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"><br /></span></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">Before that moment, that
very moment when the liquid was injected into Eilidh, much had gone before: I
had shared by story of living with SMA and Kathy shared her story of losing her
baby girl Maggie to this uncompromising genetic condition; people had
campaigned and petitioned; forms had ben completed and applications been made; processes
had been followed and approval sought. Finally, in that very moment when
nusinersen entered my daughter’s body, the only treatment for SMA, at great
financial cost to the NHS Trust, had been given and hope had finally been
delivered. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">It was a bittersweet moment,
however; babies have died while waiting on the treatment to be approved and
many individuals wait for treatment even now. Eilidh is lucky to live in Scotland: despite
Spinraza being available in 24 countries in Europe, England, Wales and Northern
Ireland are still unable to access the drug. Biogen have ceased accepting new
patients on to their expanded access programme, stating that this was in line
with the original dates set out for the NICE process of assessment. NICE and
NHS England stall in their decision making. <span style="mso-spacerun: yes;"> </span>As I watched Eilidh recover, I thought of
those whose children have died and those who have yet to receive this “miracle”
drug, contemplating how unethical and unjust it is for treatment to be
withheld. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">And then I remembered how lucky we are: Spinraza Day 0, hope delivered. </span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-50589700488265504852019-04-01T16:06:00.001+01:002019-04-01T16:06:25.380+01:00The Road to Treatment: Preparing<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;">Eilidh
has been clear: she doesn’t want to get weaker. She wants to be able to
continue to do everything that makes her life good, all the little things that
she is able to do independently. <o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9q3Yy1vw8opFMj0aVI_76QT1kBVxrFfqAUbxnwjfMDZmnHN1JiLKlTKTXTX14zYMZ01dJp5rjdc-82UQf5dYCW2UQxRHOFQ_zlHoL_nQfmTZI-z2gPDwQ86rKh0NBSBhEv_nttTs6pQtG/s1600/needle.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="405" data-original-width="720" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9q3Yy1vw8opFMj0aVI_76QT1kBVxrFfqAUbxnwjfMDZmnHN1JiLKlTKTXTX14zYMZ01dJp5rjdc-82UQf5dYCW2UQxRHOFQ_zlHoL_nQfmTZI-z2gPDwQ86rKh0NBSBhEv_nttTs6pQtG/s320/needle.jpg" width="320" /></a></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;">Eilidh
is an astute young lady. She knows that Spinraza is delivered into the fluid in
her spine and that this is done via a needle. She understands that after the
procedure she must lie flat for an hour. She appreciates that one of the side
effects of the injection is a (spinal) headache, but that caffeine can ease the
pain! (She’s dreaming of a can of Coca-Cola, or perhaps a hazelnut latte!
Neither of which, I may add, she has had before…)<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;">As
Eilidh processes treatment with Spinraza, a fight or flight response occurs, her
adrenaline soars and worry consumes her. Her heart beats faster, her breathing
becomes rapid, she gets sweaty and tremulous. If her worry continues, her tummy
hurts, her head aches, her concentrations wavers, and her sleep suffers. She
disappears in to herself.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Eilidh<span style="font-family: Verdana, sans-serif;">
is an over thinker, logical in her processes, clearly moving from one thought to
another. This does nothing for her worries, her anxieties and as a result this
past week has been very hard for her. You see, we’ve been given a date: Tuesday
2</span><sup style="font-family: Verdana, sans-serif;">nd</sup><span style="font-family: Verdana, sans-serif;"> April 2019. </span>Spinraza<span style="font-family: Verdana, sans-serif;"> is quickly becoming a reality.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;">Preparation
has been key: hospital appointments on a daily basis; constant reassurance;
relentless answering of questions; mindfulness practised; deep breathing
encouraged; and cuddles galore. Unsurprisingly, however, the worry continues…<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;">Pre-operative assessment came first. An opportunity to meet the anaesthetist (“Mummy,
Operation Ouch always has male anaesthetists…”). A detailed medical history
taken, a look around the admission ward and the opportunity to ask questions.
Eilidh was quiet and apprehensive. She showed indifference to all options given
and I answered for her, advocating as best I could, remembering chats had in
the privacy of our own home. Afterwards, when far from the hospital, the
questions and worries rolled out of her; she’d been given too much information
and was now more worried than before. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;">A
physiotherapy appointment to assess upper limb function – the lower limb
assessment had been done in school previously – lifting weights and reaching
for coins at desk height, elbow height and eye height, all in a smooth motion,
no stopping or starting, with no support. A baseline set to show objective (and
hopeful!) improvement with time and doses. A bit of fun, lots of hard work, and
Eilidh managed incontestably well – although the 1kg weight was a stretch too
far to try!</span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmjF2mnodUmoOW6Bc6swHp_EF5ire-7Stwe1PXhav9qdkTVgQTehp901pQt_nUuuw9pZuQck4QQmOKZkvoe4OO7DFXOE0YoAN2CknVlpvOrOXKrEURXQW1wfkR7rX0eHAQFFvrrcSMKPQK/s1600/play+services.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="824" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmjF2mnodUmoOW6Bc6swHp_EF5ire-7Stwe1PXhav9qdkTVgQTehp901pQt_nUuuw9pZuQck4QQmOKZkvoe4OO7DFXOE0YoAN2CknVlpvOrOXKrEURXQW1wfkR7rX0eHAQFFvrrcSMKPQK/s400/play+services.jpg" width="204" /></a></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Finally
there was a date with the Specialist Play Service at The Royal Hospital for
Children. I was dubious as </span>Eilidh<span style="font-family: Verdana, sans-serif;"> already watches Operation Ouch, performing
all sorts of (fictitious!) procedures on unsuspecting bears, dolls and family,
but the therapist was great. I’m not sure that it was anything that the
therapist said but rather the new teddy bear gifted to </span>Eilidh<span style="font-family: Verdana, sans-serif;"> as her hospital
companion; the walk-through Day Surgery to the room where we’ll be for her
</span>pre<span style="font-family: Verdana, sans-serif;">-medication and then the journey to the anaesthetic room with us by her side;
recovery where we would meet her again; and the promise of an ice lolly after
all was done. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;">Valuable
resources were also given to Eilidh for when she was at home, to work through
at her own pace, helping her to process and cope with the up coming admission
and procedure: her Hospital Passport, a patient held record of how she would
like her hospital visit to be, a place for her to write down any questions for
the staff, and somewhere for her to keep praise, stamps and stickers from the hospital
staff; and Bright Idea cards which other children had contributed to with
suggestions of ways to cope with their time in hospital. She completed the passport
and read all of the cards on arrival home. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFs-vJAYCOfhZLeelUmJBG4CpDrAxyXkPXkFlKEKozGys-OvvXdUyJKqlMfufx4wKNm8oYcIbdtmzfx-9uwBryEKOhJqeGyc98GwrrkFjWVmVsnLPx-FG273nIYTECWOadGO93Rmdd4UY-/s1600/bright+ideas.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1353" data-original-width="1600" height="337" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFs-vJAYCOfhZLeelUmJBG4CpDrAxyXkPXkFlKEKozGys-OvvXdUyJKqlMfufx4wKNm8oYcIbdtmzfx-9uwBryEKOhJqeGyc98GwrrkFjWVmVsnLPx-FG273nIYTECWOadGO93Rmdd4UY-/s400/bright+ideas.jpg" width="400" /></a></div>
<br />
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;">Preparation
for tomorrow is now nearly complete. We’re had one last look at the invaluable
resources available at “what? why? children in hospital” (<a href="http://www.wwcih.org.uk/">www.wwcih.org.uk</a>), where numerous videos are
available to watch, helping children and their families to prepare for hospital.
Eilidh has watched these previously as she prepared for an ECG, an echo, a
sleep study and pulmonary function tests: today she watched ones about getting
a cannula, having a general anaesthetic and also – just to see someone having a
procedure with Entonox – joint injections. They've helped her process the unknown. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Verdana",sans-serif;">Eilidh is as ready as she can be and I'm right by her side; let's see what tomorrow brings. </span></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-42951696910592135142019-03-31T20:05:00.002+01:002019-03-31T20:05:46.628+01:00The Road to Treatment: Waiting<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: "verdana" , sans-serif; margin-left: 1em; margin-right: 1em;"></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
</div>
<div style="margin-bottom: 13.5pt; margin-left: 0cm; margin-right: 0cm; margin-top: 0cm; text-align: justify;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">We've
been sitting in a waiting room for some time now; it's been an uncomfortable
and difficult wait... For some, and I can sympathise, waiting can be agonising,
especially when there are uncertainties about the outcome, and being patient
becomes exceptionally difficult when life doesn't quite measure up to
expectations. </span><span style="color: black; font-family: "Verdana",sans-serif;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">On
the <a href="https://touchandtickle.blogspot.com/2019/02/the-road-to-treatment-scotlands-seal-of.html" target="_blank">8th February I heard that Scotland</a> would
approve Spinraza for all types of SMA; that same day I also heard the news that
Eilidh would receive treatment ahead of the 1st April date given for all those
living with SMA as we had applied some time previously. </span><span style="color: black; font-family: "Verdana",sans-serif;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">The
news was exciting and terrifying, my mind in an absolute tailspin with equal
measures of hope, gratitude and worry. I shared the news with David and the
girls, and then family and close friends. We shared the news gently and in a
considered way as we didn't have details of when and how: and yet that didn't
matter to those we told, all they heard was that Eilidh would at last receive
treatment. </span><span style="color: black; font-family: "Verdana",sans-serif;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">Over
time the excitement dwindled as it became aware there was no plan as to how to
proceed. A little girl with SMA 2 receiving Spinraza was uncharted territory
for our neuromuscular team, plans and protocols yet to be written. It became
apparent that the NHS local health boards were somewhat lagging behind, not
ready to act upon the Scottish Government's decision to make Spinraza available
through the Ultra-Orphan Appraisal Process. </span><span style="color: black; font-family: "Verdana",sans-serif;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif;"><o:p><br /></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif;"><o:p><br /></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXIZxJGlF8EGvNGTFGCIEadgQ5LY-UOJE1Vltls4hHU09GKI6Ue8kvlIHHCe4CWPpGZVfFGxLvlTEhCaiAf9Op8gDrUfQRmd1y-K2aKXB5E2k9CIf069PmX31TuW0Wio0O4yEbpNNvEgFD/s1600/waitingroom_email-620x250-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="250" data-original-width="620" height="258" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXIZxJGlF8EGvNGTFGCIEadgQ5LY-UOJE1Vltls4hHU09GKI6Ue8kvlIHHCe4CWPpGZVfFGxLvlTEhCaiAf9Op8gDrUfQRmd1y-K2aKXB5E2k9CIf069PmX31TuW0Wio0O4yEbpNNvEgFD/s640/waitingroom_email-620x250-1.jpg" width="640" /></a></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">Weekly
emails to our neuromuscular team were sent to try to find out what was
happening: being kept in the dark was so very hard, emphasising the feelings of
lacking control, affirming the unwavering doubt and uncertainty.</span><span style="font-family: Verdana, sans-serif;"> </span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<br /></div>
<blockquote class="tr_bq" style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<blockquote>
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">"Just
my weekly chaser for information regarding the plan for </span><span style="color: black; font-family: "Verdana",sans-serif;">Spinraza</span><span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">.
It's now been over 4 months since our clinic appointment where we discussed
applying for the treatment and 4 weeks since we talked about it being
approved for </span><span style="color: black; font-family: "Verdana",sans-serif;">Eilidh</span><span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">.</span><span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">Time
is ticking on..."</span><span style="color: black; font-family: "Verdana",sans-serif;"><o:p> </o:p></span></blockquote>
</blockquote>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">And
then the frustration began to overwhelm me, the uncertainty unbearable:</span><span style="color: black; font-family: "Verdana",sans-serif;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<br /></div>
<blockquote class="tr_bq" style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<blockquote class="tr_bq">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">"While
we are grateful that you got back to us and that you are trying to keep
the lines of communication open, as a family, we are deeply frustrated by
the process to date and disappointed that things have not progressed. </span></blockquote>
<blockquote>
<span style="color: black; font-family: "Verdana",sans-serif;"><o:p> </o:p></span><span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">The
delays and ceaseless uncertainty are causing a significant
burden to all of us and I have come to realise that perhaps this is a symptom
of the rare disease journey or indeed of the Health Board. It is unclear
whether these delays are due to the decision to open up access to Spinraza as
of 1st April 2019 and that you have your hands tied until then,
despite the decision to proceed with treatment being made in October, the application
going in in December, the date on a form being edited in February and a
phone call to us on February 8th to let us know that Eilidh was proceeding with
Spinraza . Or perhaps, genuinely, there are delays with the anaesthetists...</span><span style="color: black; font-family: "Verdana",sans-serif;"><o:p> </o:p></span><span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">I
cannot help but compare, as it has been done by others, my daughter's
neuromuscular condition with cancer. If she has been diagnosed with cancer,
her treatment would have been expedited and we would not be waiting 5
months later for a treatment that was sold to us by you to maintain her current
level of function..."</span></blockquote>
</blockquote>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;">With that email, coincidentally or not, doors
suddenly began to open and the conversations being had in the background between
clinicians were shared with us. Concerns about the actual procedure with
Eilidh's scoliosis - would it be possible to access the intrathecal space?
Could we proceed with "gas & air" or would a general anaesthetic
be needed? If a GA was needed, would Eilidh need an overnight stay? Could an intrathecal portacath be the answer - benefits and risks
considered? There were still perhaps more questions than answers but the news that conversations were happening reassured me that Eilidh's case was being
considered and that, most importantly, we were moving forward to the common
goal of Eilidh receiving her first dose of Spinraza.</span><span style="color: black; font-family: "Verdana",sans-serif;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="color: black; font-family: "Verdana",sans-serif; mso-bidi-font-family: Arial;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<br />h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-48529847782591859112019-03-05T14:24:00.001+00:002019-03-05T14:24:33.850+00:00Listen Up, NICE!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjVrd40zT0-x3fUBvhJ5bvcqSBxBfKbFyb1suth4Ais3_ud41DsPnvvTxFm10DXFEZ7yTDmxCwlqTzma7Z0-9A3GzpNk9BRilC-FIZgWCUkZ2AQhfZJ7Ca0FViJICxx0hWmyg1_SwjMMUC/s1600/The-Guardian-logo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="452" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjVrd40zT0-x3fUBvhJ5bvcqSBxBfKbFyb1suth4Ais3_ud41DsPnvvTxFm10DXFEZ7yTDmxCwlqTzma7Z0-9A3GzpNk9BRilC-FIZgWCUkZ2AQhfZJ7Ca0FViJICxx0hWmyg1_SwjMMUC/s640/The-Guardian-logo.jpg" width="640" /></a></div>
<div style="color: #121212; font-size: 17px; font-variant-ligatures: common-ligatures; margin-bottom: 1rem; padding: 0px; text-align: justify;">
<br /></div>
<div style="color: #121212; font-size: 17px; font-variant-ligatures: common-ligatures; margin-bottom: 1rem; padding: 0px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">30 heath care professionals put their names to a letter in the Guardian, calling for Spinraza to be recommended by NICE and NHS England for the treatment of SMA1. I'm proud of them for doing so, for speaking out for something that the truly believe in, a life-prolonging treatment that they never thought possible at the start of their careers. Sometimes you need to stand above the parapet, waving and shouting for what you believe in, hoping that someone will listen and that lives will change as a result. Thank you for speaking out so publicly.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<blockquote class="tr_bq" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="background: white; color: black; font-size: 13pt;">"Children with spinal muscular atrophy
type 1 (SMA1), the most common genetic fatal disease in infants, never acquire
the ability to sit or speak and rarely live beyond their second birthday. </span><span style="background: yellow; color: black; font-size: 13pt;">Spinraza</span><span style="background: white; color: black; font-size: 13pt;"> is
an effective treatment, but – despite being available in 24 European countries,
including Scotland – it cannot be accessed on the </span><span style="background: yellow; color: black; font-size: 13pt;">NHS</span><span style="background: white; color: black; font-size: 13pt;"> in
England, Wales and Northern Ireland.</span></span></blockquote>
<br />
<blockquote class="tr_bq" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="background: white; color: black; font-size: 13pt;">In 2017, a global compassionate scheme for children
with SMA1 was introduced by the drug’s manufacturer, </span><span style="background: yellow; color: black; font-size: 13pt;">Biogen</span><span style="background: white; color: black; font-size: 13pt;">, to
ensure temporary access to the drug. We have witnessed children with SMA1
receiving </span><span style="background: yellow; color: black; font-size: 13pt;">Spinraza</span><span style="background: white; color: black; font-size: 13pt;"> living longer,
learning to speak and crawl, and even stand after treatment. However, the </span><span style="background: yellow; color: black; font-size: 13pt;">Biogen</span><span style="background: white; color: black; font-size: 13pt;"> scheme
closed to new patients in November 2018. This means newly diagnosed babies no
longer have access to </span><span style="background: yellow; color: black; font-size: 13pt;">Spinraza</span><span style="background: white; color: black; font-size: 13pt;">.</span></span></blockquote>
<br />
<blockquote class="tr_bq" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="background-color: white; color: black; font-size: 13pt;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Over the past three months, we have diagnosed half
a dozen infants with SMA1 in England. As physicians, there is nothing more
frustrating than knowing a medicine that can help your patients is agonisingly
out of reach. For parents, hope is taken away, causing unimaginable heartbreak.
As the condition progresses children are unable to regain lost function. Delay
in treatment leads to the worst outcome: early death.</span></span></blockquote>
<br />
<blockquote class="tr_bq" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="background: white; color: black; font-size: 13pt;">Ahead of a meeting with the National Institute
for Health and Care Excellence (Nice) this week, we, along with
patient advocacy groups like Muscular Dystrophy UK and </span><span style="background: yellow; color: black; font-size: 13pt;">SMA</span><span style="background: white; color: black; font-size: 13pt;"> UK,
strongly urge it to show flexibility and recommend this effective treatment
for </span><span style="background: yellow; color: black; font-size: 13pt;">SMA</span><span style="background: white; color: black; font-size: 13pt;"> patients. In the
longer-term, there must be an overhaul of this convoluted appraisal process,
which is not fit-for-purpose for treatments for rare conditions in
England."</span></span></blockquote>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">
</span></div>
<div style="font-size: 17px; font-variant-ligatures: common-ligatures; margin-bottom: 1rem; padding: 0px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<br /></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-42280716557353765842019-02-15T15:00:00.000+00:002019-05-08T16:30:55.124+01:00My Career... Then SMA<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">With the eagerness and naivety
of a teenager I studied medicine. My Higher results arrived and before looking
at them I made the decision that if I had worked hard enough and got the grades,
I’d study medicine; if not perhaps then agriculture… Two very different worlds
and futures, careers poles apart maybe, but both representing a little of who I
was then.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2RYmsI3LqEpqslfxZv7RJnBmW3rvTB9KSFHfNpnak_WEp2RuOcorKrQGCboAsHTaVGEuJqmf0Li6vthIkhwfY_ETuxio92LuYGPyYU5FysnXab4x4prsnW2WjbltEOaKl23i4THuPVXCR/s1600/stethoscope.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" data-original-height="1125" data-original-width="1143" height="314" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2RYmsI3LqEpqslfxZv7RJnBmW3rvTB9KSFHfNpnak_WEp2RuOcorKrQGCboAsHTaVGEuJqmf0Li6vthIkhwfY_ETuxio92LuYGPyYU5FysnXab4x4prsnW2WjbltEOaKl23i4THuPVXCR/s320/stethoscope.jpg" width="320" /></span></a></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">I loved my pre-clinical years in
lecture theatres and laboratories but with each clinical patient-facing year
that passed I dreaded hospitals more. Not the people who I saw as patients, rather
the authoritarian father figures of medicine who bore down on students,
undermining our very being, our confidence in our abilities threatened.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">I survived, however, and graduated
not once but twice. The first with a BSc and then with the hallowed MBChB. I chose
to work my junior doctor years in smaller district general hospitals.
Consultants were supportive and, in the most part, human. We worked as a team with
respectful hierarchy and we worked (and partied) hard. I was one of the old
school, pre-European work directive: eighty-hour weekends on call, crawling on my
knees in search of sleep, were the norm. It was at times an insurmountable and
steep learning curve, but I became a competent and respected doctor.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">During that first year of my
working career I questioned whether there was more to life than medicine. While
everyone moved on to new jobs at the end of our pre-registration year, I travelled and explored the world and all that it
had to offer. I gathered experience in a wide variety of specialties, gaining
knowledge, clinical acumen and life experiences before coming home. On my
return, I continued to work in different specialties, not quite sure of the
direction to choose. I stumbled into general practice, bringing to the
specialty all that I had learned and all that I was. It felt right: I had found
my place. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">I was lucky to marry a man who
loved me just as I was and we welcomed two beautiful daughters into the world.<span style="mso-spacerun: yes;"> </span>Life was perfect… Fifteen months after our
second little girl was born things went awry: life threw a curve ball so large
that I began to question my very DNA. A diagnosis of an ultra-rare condition - spinal
muscular atrophy (SMA) meant that life as we knew it was over and a new
perfectly imperfect life needed to be sought. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">I couldn’t work in the year
that followed Eilidh's diagnosis. I could barely breathe, barely care for myself and couldn't look after others. I knew I would have to listen, diagnose, prescribe and safety-net
while all the time my head would be screaming, “I can’t do this! I can’t listen
to you! My heart is broken and nothing can fix it… Who is looking after me? You
know nothing of me! You know nothing of what is happening at home…How dare you
come to see me with this trivial thing…” </span></span><br />
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span>
<span style="font-family: "verdana" , sans-serif;"><span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">When I was ready, when my fractured heart had healed somewhat, I knew that returning to work, but specifically general practice
would be difficult, if not impossible. I, therefore, made the decision, w</span></span>ith my head barely above
water, to stand back from General Practice and started working in a hospice,
caring for those with life-limiting and life-threatening conditions. I cared
for those approaching the end of their lives and supported their families, safe
in the knowledge that I could help them, that I could listen and not judge, and that their spiritual pain and angst would distract me from my own. Their need was
far greater than my own.</span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">However, over time I began to
wonder about my ability to empathise with my patients. I was giving so much of
myself at home; caring for my family was consuming me. Without compassion, I
doubted who I was; I doubted the doctor I was. Without compassion I feared I
was no more than an empty shell… How could I continue to practice without the
one thing I thought necessary to my vocation? Perhaps I was being ridiculously
tough on myself, keen to berate and undermine my very being. Perhaps I didn’t need
to give as much of myself to others. Perhaps my patients didn’t expect anything
more than me being present, listening, examining them, treating them. But I
expected more of myself… I felt my career slipping away from me.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">Today, more than a year on, a year away from
patient-facing medicine, I realise – or perhaps rather I perceive - that I
carry so much more than other SMA mummies, knowing the minute possibilities,
the best and worst-case scenarios of a future unwritten. I look at my (not so) baby
girl through the eyes of a mummy but as a medical professional too, unable to unseat
or unlearn my years of training. I honestly wish I had never studied medicine;
it’s a burden I feel that I carry rather than a gift. I want to wish away the
career, my vocation, that I have long studied for, developed and grown until now.
SMA has stolen my career and I have relinquished it further, burnt out and
beside myself, lost to a role of caring. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">Truthfully – and it’s hard to
admit - I am bitter and resentful of the life I have now. I am uncertain of my future
and my career sits precariously. I know that I need to carve a way forward
though, ensuring balance, seeking satisfaction, and finding more joy in my day
to day. I’m not sure what happens next; I feel as if I’m on the edge of an abyss.
I fear that I am about to give up on a specialty that I am passionate about
because I need to be present and flexible for my family. I question whether to
return to general practice to carve out a different career path, knowing that I
can not give my all to my patients. I wonder if I can be a doctor, despite it
being part of who I am, despite it being my very essence. And then I wonder, if i can't be a doctor, who exactly am I?<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><o:p><span style="font-family: "verdana" , sans-serif;"><br /></span></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><o:p><span style="font-family: "verdana" , sans-serif;"><br /></span></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<br /></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-55250935753897198632019-02-13T10:46:00.001+00:002019-02-13T10:52:51.716+00:00The Road to Treatment: Scotland's Seal of Approval<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">My first experience of SMA was a little baby boy lying ventilated in a PICU in Glasgow. He was adored by his family but love alone was not enough. There was no hope and no future ahead for them.</span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">My daughter was diagnosed with SMA in 2010. There was no treatment. There was no cure. Hospice care was mentioned early on - before we realised what a good life someone living with SMA 2 could have. </span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Medical research was ever developing in the background as new families were diagnosed with the devastating news that their child had SMA; there was still no treatment or cure available. </span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">New drugs were developed and trialled. Then, all of a sudden, there was hope in the form of Nusinersen and the battle for access to the treatment began.</span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">A little baby girl called Maggie died waiting for Nusinersen to be approved. It came too late for her...</span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Later the SMC approved Spinraza for type 1 and the lives of newly diagnosed infants were changed. The evidence for types 2 and 3 wasn't so clear cut and families like mine have been waiting for news since...</span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">On Friday I received a phone call from Catherine Woodhead, the CEO of MDUK. She likened the news to "winning the lottery but not being able to cash the cheque quite yet"; the news was monumental and life changing and I wasn't allowed to share it with anyone. </span><span style="font-family: "verdana" , sans-serif;">Until today...</span></div>
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuSnZ7mAXAMP99GSazVgHxkBJdJng6FGEW3IVPjlBx2DzyBUVgvf5uKVVkqCiU1WWCtE9gbSE2n-g2XogacEigg99SWPycJGu1x0hs8zHBqKuYXAN-H4VVRxRq-gie-h4oz6EuaLGQlRuW/s1600/spinraza+announcment.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="442" data-original-width="1091" height="257" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuSnZ7mAXAMP99GSazVgHxkBJdJng6FGEW3IVPjlBx2DzyBUVgvf5uKVVkqCiU1WWCtE9gbSE2n-g2XogacEigg99SWPycJGu1x0hs8zHBqKuYXAN-H4VVRxRq-gie-h4oz6EuaLGQlRuW/s640/spinraza+announcment.PNG" width="640" /></a></div>
<br />
<br />
<br />
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">New babies born, children previously diagnosed and adults currently living with SMA in Scotland now have hope where once there was little. There is a treatment they can access; a life altering, game changing dose of hope! The management of SMA as a ultra-rare condition is changing: oral preparations continue to be trialed, gene therapy trials are about to open in the UK. Children and adults will live longer and achieve better quality of lives as a result. </span></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">My excitement comes with sadness, however. Not so far away from here lives a young lady called Bea. She's a month or so older than Eilidh and was diagnosed with SMA at the same time as Eilidh. I have shared the good, the bad and the ugly with her dad over the years. Today he found out that Scotland has approved Spinraza while England (and Wales and Northern Ireland) lags behind - <b>no one</b> with SMA living in England currently has access to Spinraza. </span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">It is unjust and unethical to withhold treatment. The research clearly demonstrates, particularly in the case of SMA type 1, that Spinraza saves lives and improves the quality of lives of those with type 2 and 3. The Hippocratic Oath states, "First, do no harm"; by denying infants Spinraza, NICE and NHS England are causing harm - physical, psycho-social and spiritual harm. Access to medicines is a fundamental element of the right to health. While Spinraza might not be seen as an essential medicine, f<span style="background-color: white;">rom a human rights perspective, access to medicines is intrinsically linked with the principles of equality and non-discrimination, transparency, participation, and accountability. NICE and NHS England have a responsibility to uphold these principles and not base their decisions on money alone, for distributive justice is a difficult arguement to swallow for those living with the devastating consequences of SMA . </span></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><span style="background-color: white;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><span style="background-color: white;">The lives of those with SMA, or those living with any other neuro-muscular condition or ultra-rare/rare disease for that matter, are no less worthy than the lives of those with living with cancer or chronic disease, and yet it seems that they have to work harder to have their voices and opinions heard, to have treatments approved. The minority are not treated equally. I urge NICE and NHS England to demonstrate considered thinking, foresight and leadership in their discussions with Biogen and those living with SMA, and move forward to making Spinraza available for all, joining 24 other European countries in treating SMA and giving hope to many.</span></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><span style="background-color: white;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><span style="background-color: white;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><span style="background-color: white;"><br /></span></span></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-61232706856863691312019-02-12T22:27:00.001+00:002019-02-12T22:27:28.137+00:00The Cost of SMA<br />
<br />
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">2017 and I opened an article to read about the cost of SMA. I wondered if I could use it for my continuing professional development? </span><span style="font-family: "verdana" , sans-serif;">I read the abstract but quickly stopped, unable to read on. This was far too close, too personal to consider further... I stood up and walked away from my desk, angry at the impact SMA had on our lives. I looked out over the Campsie hills and focused on breathing. In and out, in and out, in and out... It's taken until now for me to go back and read the article, knowing how big the cost has been to me and to my family as we continue to live an unfamiliar life with SMA.</span></div>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoPtKjYJ001q_YI3qL5yAmzuQykvUjJ5zaLiqS7ScYDntuLH9Cj4ygpOKB_6N-wzwl6mgGBCCEFHLPhrU-NiMqDsMFYtIOpcEpsvUKbIGjxb6wb5fc1f9VM6HrMYmgfB-NDWHvaSIegV8J/s1600/financial+cost+of+sma.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="415" data-original-width="1343" height="195" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoPtKjYJ001q_YI3qL5yAmzuQykvUjJ5zaLiqS7ScYDntuLH9Cj4ygpOKB_6N-wzwl6mgGBCCEFHLPhrU-NiMqDsMFYtIOpcEpsvUKbIGjxb6wb5fc1f9VM6HrMYmgfB-NDWHvaSIegV8J/s640/financial+cost+of+sma.PNG" width="640" /></a></div>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span><br />
<div style="text-align: center;">
<span style="font-family: "verdana" , sans-serif;"><a href="https://bmjopen.bmj.com/content/8/5/e020907" style="font-size: small;" target="_blank">"<span style="background-color: white; color: #333333;">Financial, opportunity and psychosocial costs of spinal muscular atrophy: an exploratory qualitative analysis of Australian carer perspectives"</span></a></span></div>
<br />
<br />
<br />
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">It's not often that the perspective of the care giver is captured, that the true burden of caring for someone with additional needs is shared, but this qualitative study - a study based on interviews and allowing an individual to tell their story - provides an insight into the lives of families caring for a child with SMA. </span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">The overarching finding was that SMA impacts on the care giver's quality of life or rather </span><span style="background-color: white; color: #222222;"><span style="font-family: Verdana, sans-serif;">their standard of health, comfort, and happiness: unfortunately, none of this came as a surprise.</span></span></div>
<div style="text-align: justify;">
<span style="background-color: white; color: #222222;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<br />
<ul>
<li style="text-align: justify;"><span style="font-family: Verdana, sans-serif;">There are increased demands and pressures on the family finances - appropriate and accessible housing, specialised equipment for example.</span> </li>
<li style="text-align: justify;"><span style="font-family: Verdana, sans-serif;">Support is necessary, from partners and grandparents, but this becomes increasingly difficult with our own time constraints and the pull of the other members of the family, and also with ageing grandparents. Any reprieve or respite is hard to find and it is often difficult to "let go" and trust another to care for your child.</span></li>
<li style="text-align: justify;"><span style="font-family: Verdana, sans-serif;">Reduced career opportunities, lack of career progression and lost income can result from the increasing demands of care giving, impacting on an individuals self worth. </span></li>
<li style="text-align: justify;"><span style="font-family: Verdana, sans-serif;">Physical and mental well being can suffer as a result of the burden of care giving. Interestingly, despite the impact, very few receive formal psychological support.</span></li>
<li style="text-align: justify;"><span style="font-family: Verdana, sans-serif;">Despite everything, resilience and determination were voiced by the participants.</span></li>
</ul>
<br />
<div style="text-align: justify;">
<span style="background-color: white; color: #222222;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="background-color: white;"><span style="font-family: Verdana, sans-serif;"><span style="color: #222222;">So none of this came as a surprise, the quotes echoing what I see in my own life, the findings summarising the burden I feel so acutely, my own resilience and determination waning. The question is this, knowing what we know, realising the truth of the research, how do we go on living when we are overburdened, overstretched and under resourced? </span></span></span></div>
<div style="text-align: justify;">
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span></div>
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span>
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span>
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span>
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span>
<br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<br /><br />
<br />
<br />
<br />
<br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-73648466783032100042019-02-06T21:26:00.000+00:002019-02-11T21:27:38.811+00:00The Road to Treatment: In Limbo<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: "verdana" , sans-serif;">The decision was made. Then the waiting began...</span></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFjgAp5fVCS3cobd6O7VKFMqz9I-dJkWcmmNkaz9I1KfdIw9HXglROznfOD5Mk79RyXvgAGVQUEqS0tpLL74wEQuJYZZ6c3O8Sw9G0FHJCaEl3uDDDt1-QTMUZgcma48QkeJXA0wPQoOQ_/s1600/InLimbo_34+%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="750" data-original-width="750" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFjgAp5fVCS3cobd6O7VKFMqz9I-dJkWcmmNkaz9I1KfdIw9HXglROznfOD5Mk79RyXvgAGVQUEqS0tpLL74wEQuJYZZ6c3O8Sw9G0FHJCaEl3uDDDt1-QTMUZgcma48QkeJXA0wPQoOQ_/s400/InLimbo_34+%25281%2529.jpg" width="400" /></a></div>
<div style="text-align: center;">
<a href="http://www.zisiskardianos.com/" target="_blank"><span style="font-family: "verdana" , sans-serif; font-size: x-small;">Image by Zisis Kardianos</span></a></div>
<br />
<br />
<br />
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">The decision was made on the 31st October. New evidence from Europe was being shared and published which reassured me and </span><span style="font-family: "verdana" , sans-serif;">Eilidh was clear - she didn't want to become weaker. We were proceeding with her application to the National Review Panel (NRP) through the Peer Approved Clinical System (PACS) Tier 2 for Nusinersen. A</span><span style="font-family: "verdana" , sans-serif;">n answer was imminent. Or so we thought...</span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">After initial confusion regarding our willingness to proceed with the process, then administrative delays securing the completion of the second part of the application, Eilidh's application was submitted to NRP at the start of December . It was hoped that we would hear before Christmas - an early Christmas present for us! - but, realistically, it was thought that it would be closer to four weeks before we heard.</span></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">The National Review Panel, which meets monthly, is advisory and does not make ‘decisions’ or ‘instruct’ NHS board
decision-making, but rather the findings and recommendations of the National Review Panel are shared with the local NHS
board Chief Executive before a definitive action plan to move forward with treatment is made. We had to allow the process to follow it's natural course.</span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Eilidh asked daily if we had heard from her neurologist. She understood that we had made the decision to apply for Nusinersen, she just didn't want to get a needle in the back to receive it! She seemed much more at ease with the idea that it would be administered while "asleep" or under anaesthesia and went about telling everyone about the plan. Eilidh was "excited but worried too". She needed answers and she continued to ask if we had heard any news.</span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I explored her understanding of what the drug might do for her. We talked through the need for the physiotherapists to assess her muscle strength or level of function before and after the doses to see is she was gaining benefit from the treatment. She understood that some children are "non-responders" and that she might not see any difference at all, becoming weaker as her body changes with puberty. I explained that the hope was that she would maintain her current level of function, allowing her to do all of the things that she enjoys on a daily basis, all of the things that makes her who she is. </span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">One evening, while reading with her, it hit me... I would be remiss if I didn't talk to her about this, careless to not explore her grasp of how Nusinersen would actually help her... </span><span style="font-family: "verdana" , sans-serif;">Tentatively I began, "Can I talk to you about something really difficult?". She nodded, giving me the go ahead to continue. "You know this medicine isn't going to help you walk?". She looked at me and smiled, "Mummy, the medicine is magical but it's not that magical!". My heart broke open a little bit again and the tears fell silently as I cuddled her. Here she was, wise beyond her years, teaching me how to live with </span>SMA<span style="font-family: "verdana" , sans-serif;">, knowing exactly what Nusinersen would mean for her.</span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Eilidh stopped asking daily - it's every other day that she asks, "Any news?". She needs an answer; we all do. We all need to move forward... She knows that I'm pushing the clinical team for news on the decision and that I will tell her as soon as I know. The waiting is exhausting. After three months of being in limbo surely there is an end in sight?</span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-82314265105656807472019-02-06T10:09:00.001+00:002019-02-06T10:09:28.049+00:00Stalled<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Verdana, sans-serif; text-align: start;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><span style="text-align: start;">I remember a particular episode of The Simpson so very clearly - which is odd really as I can count on one hand how many episodes I have seen. </span><span style="text-align: start;">While I commuted to work over the Kingston Bridge, with the struggles and juggles of day-to-day life, I would often recall the moment that Madge stops her car, reality too difficult to continue on with. I wanted to be like Madge, drawing to a halt my busy treadmill of a life, stepping off and watching from a distance. Ev</span><span style="background-color: white; color: #252525; text-align: start;">ery day I would carry on, however, fearful of what would happen if I, only for a moment, stood still... Some years later the time came for me to stop commuting over the bridge, but I still sympathise with Madge's plight.</span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFazLJ2XPAg2zat6dzrdIOfLv9om26BzDct2K-0gnFR4Azv9hX6n_AhbM022YGR6Xd64PTgUeL4DXl1Ym2x1Pv-w2oDQ_bgBYzCkqk9dHWdqiC_cX1skoHWiq1-dpWxBKHUS1Ht-UKspA-/s1600/50HomerAlone.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFazLJ2XPAg2zat6dzrdIOfLv9om26BzDct2K-0gnFR4Azv9hX6n_AhbM022YGR6Xd64PTgUeL4DXl1Ym2x1Pv-w2oDQ_bgBYzCkqk9dHWdqiC_cX1skoHWiq1-dpWxBKHUS1Ht-UKspA-/s400/50HomerAlone.jpg" width="400" /></span></a></div>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<div style="text-align: justify;">
<span style="background-color: white; font-family: Verdana, sans-serif; font-size: x-small; line-height: 22.4px;">Series 3, Episode 15 "Homer Alone" </span></div>
<div style="text-align: justify;">
<span style="font-family: Verdana, sans-serif; font-size: x-small;"><span style="background-color: white; line-height: 22.4px;">One day, </span><a href="https://en.wikipedia.org/wiki/Marge_Simpson" style="background: none rgb(255, 255, 255); line-height: 22.4px; text-decoration: none;" title="Marge Simpson">Marge</a><span style="background-color: white; line-height: 22.4px;"> becomes stressed from all of the chores she does for </span><a href="https://en.wikipedia.org/wiki/Simpson_family" style="background: none rgb(255, 255, 255); line-height: 22.4px; text-decoration: none;" title="Simpson family">her family</a><span style="background-color: white; line-height: 22.4px;">. The day is particularly stressful as she must run several errands. While driving over a bridge, she listens to the radio and hears the DJs make a cruel prank call to a man. She suddenly snaps after Maggie accidentally bursts open her bottle and floods the car with milk and parks her car in the middle of the bridge, blocking traffic. The police try to convince her to move her car, to no avail. Finally, </span><a href="https://en.wikipedia.org/wiki/Homer_Simpson" style="background: none rgb(255, 255, 255); line-height: 22.4px; text-decoration: none;" title="Homer Simpson">Homer</a><span style="background-color: white; line-height: 22.4px;"> arrives and convinces her to get out of the car, and she is promptly arrested by the police. Many women sympathise with Marge's plight, and </span><a class="mw-redirect" href="https://en.wikipedia.org/wiki/Joe_Quimby" style="background: none rgb(255, 255, 255); line-height: 22.4px; text-decoration: none;" title="Joe Quimby">Mayor Quimby</a><span style="background-color: white; line-height: 22.4px;">, hoping to gain popularity, orders her release.</span></span></div>
<span style="background-color: white; color: #252525; font-family: Verdana, sans-serif; font-size: 14px; line-height: 22.3999996185303px;"><br /></span>
<br />h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-65638324981800900712019-02-05T11:07:00.001+00:002019-02-05T11:09:54.949+00:00The Road to Treatment: Our Decision<div style="text-align: left;">
</div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="background-color: #f3f3f3;"><span style="font-family: "verdana" , sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; font-family: "verdana" , sans-serif;"><br /></span></span>
<span style="font-family: "verdana" , sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; font-family: "verdana" , sans-serif;"><br /></span></span><span style="font-family: "verdana" , sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333;">As I wrote previously: "<a href="http://touchandtickle.blogspot.com/2018/05/the-road-to-treatment-living-with-sma.html" target="_blank">Nusinersen will not be everyone’s choice but everyone living with SMA</a>, regardless of the type - should be allowed to have
the opportunity to make such a choice in the hope that they can live the best
possible independent life. What I am asking is for the chance to add Nusinersen
to the medical management of SMA so that individuals, no matter their age, no
matter their type of SMA, have the choice of making the right
decision regarding treatment for them, and can hope to achieve a future of
well being that has never been possible before."</span><span style="color: black;"><o:p></o:p></span></span></span><br />
<span style="background-color: #f3f3f3;"><span style="font-family: "verdana" , sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; font-family: "verdana" , sans-serif;"><br /></span></span>
<span style="font-family: "verdana" , sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; font-family: "verdana" , sans-serif;"><br /></span></span>
<span style="font-family: "verdana" , sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333; font-family: "verdana" , sans-serif;"><br /></span></span>
</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXuhyphenhyphenaTXoRoqTvqm0DegqFJm2Z9pT6xQDx7gmKoDrJUysJWTjvbcBaouYrz8plLkh5qifxh9GW3PXASBrIlnGtq9LdkwHWXEBw21qW-1NJDi1RsWS16HQQZB3X7JhflKZQUWg4F67VBP4Q/s1600/choice.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="background-color: #f3f3f3; font-family: "verdana" , sans-serif;"><img border="0" data-original-height="623" data-original-width="900" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXuhyphenhyphenaTXoRoqTvqm0DegqFJm2Z9pT6xQDx7gmKoDrJUysJWTjvbcBaouYrz8plLkh5qifxh9GW3PXASBrIlnGtq9LdkwHWXEBw21qW-1NJDi1RsWS16HQQZB3X7JhflKZQUWg4F67VBP4Q/s320/choice.jpg" width="320" /></span></a></div>
<span style="font-family: "verdana" , sans-serif;"><span style="background-color: #f3f3f3; color: #333333; font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; margin-bottom: .0001pt; margin: 0cm; orphans: 2; text-align: justify; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;">
<span style="background-color: #f3f3f3;"><span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; margin-bottom: .0001pt; margin: 0cm; orphans: 2; text-align: justify; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;">
<span style="background-color: #f3f3f3; font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333;">Everyone deserves the right to choose. </span></span><span style="color: #333333;">Eilidh made a choice; "I don't want to get weaker."</span></span><br />
<span style="color: #333333;"><span style="background-color: #f3f3f3; font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; margin-bottom: .0001pt; margin: 0cm; orphans: 2; text-align: justify; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;">
<span style="font-family: "verdana" , sans-serif;"><span style="background-color: #f3f3f3; color: #333333; font-family: "verdana" , sans-serif;">Her choice meant I no longer had the right to choose for her; she was clear in her own mind, knowing what treatment would mean.</span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="background-color: #f3f3f3; color: #333333; font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div style="margin: 0cm; text-align: justify;">
<div style="word-spacing: 0px;">
<span style="background-color: #f3f3f3; font-family: "verdana" , sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #333333;">Only after hearing Eilidh be so clear did I then chose to read the research, having
avoided the papers and the abstracts, the text and statistics, quietening my
natural instinct to critically appraise and read between the lines. I chose to
focus on realistic, person-centered medicine: my daughter chooses not to get
weaker and with SMA the only hope is Nusinersen.</span><span style="color: black;"><o:p></o:p></span></span></div>
<div style="word-spacing: 0px;">
<span style="font-family: "verdana" , sans-serif;"><span style="background-color: #f3f3f3; color: #333333; font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div style="word-spacing: 0px;">
<span style="font-family: "verdana" , sans-serif;"><span style="background-color: #f3f3f3; color: #333333; font-family: "verdana" , sans-serif;">Immediately after the <a href="https://touchandtickle.blogspot.com/2018/05/the-road-to-treatment-living-with-sma.html?q=PACE" target="_blank">PACE meeting</a> Eilidh's neurologist approached me and said he thinks that we should put Eilidh forward for Nusinersen. The meeting had been far more emotional than I had imagined and I cried as he talked me through the likelihood of my little girl becoming weaker with her pubertal growth surge. I didn't want to subject her to intrathecal injections and increased anxiety with anecdotal or poorly significant evidence; it wasn't the right time for us to move forward with Nusinersen .</span></span></div>
<div style="word-spacing: 0px;">
<span style="font-family: "verdana" , sans-serif;"><span style="background-color: #f3f3f3; color: #333333; font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div style="word-spacing: 0px;">
<span style="color: #333333; font-family: "verdana" , sans-serif;"><span style="background-color: #f3f3f3;">Over the months Nusinersen and the decision to put Eilidh forward for treatment was not far from my mind. Was I denying my daughter the hope of strength and a better quality of life? Perhaps, but what is she was a non-responder and we had put her through such trials of treatment? And so it continued, the internal debate and I have to admit it, it was exhausting: I carried the burden, not wanting to share this decision with anyone</span></span></div>
<div style="word-spacing: 0px;">
<span style="color: #333333; font-family: "verdana" , sans-serif;"><span style="background-color: #f3f3f3;"><br /></span></span></div>
<div style="word-spacing: 0px;">
<span style="background-color: #f3f3f3; font-family: "verdana" , sans-serif;"><span style="color: #333333;">A neurology appointment and the elephant in the room - </span><span style="color: #0e0e0e;">an antisense oligonucleotide that increases the production of survival motor neurone (SMN) protein, thereby helping to compensate for the defect in the SMN1 gene found in 5q spinal muscular atrophy. </span><span style="color: #0e0e0e;">Eilidh chose to leave the room at this point. She knows that she doesn't want to get weaker but she wasn't keen to hear all of the details.</span><span style="color: #0e0e0e;"> </span></span></div>
<div style="word-spacing: 0px;">
<span style="color: #0e0e0e;"><span style="background-color: #f3f3f3; font-family: "verdana" , sans-serif;"><br /></span></span></div>
<span style="background-color: #f3f3f3; font-family: "verdana" , sans-serif;"><span style="color: #0e0e0e; word-spacing: 0px;">The team was clear, Nusinersen was the answer for Eilidh, to maintain if not improve her muscle strength as her body grows, allowing her to continue to bake and draw and play. </span><span style="color: #0e0e0e;">We discussed how we would approach treatment. Physiotherapy, play therapists, anaesthetists. </span>Entonix<span style="color: #0e0e0e;"> or general </span>anaesthetic<span style="color: #0e0e0e;">. Dosing regimes. It would be an undertaking but now we, as husband and wife, and knowing </span>Eilidh's<span style="color: #0e0e0e;"> wishes - and at nine years of age, she is so very wise - we made a decision to move forward. </span></span><br />
<div style="word-spacing: 0px;">
<span style="color: #0e0e0e;"><span style="background-color: #f3f3f3; font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div style="word-spacing: 0px;">
<span style="color: #0e0e0e;"><span style="background-color: #f3f3f3; font-family: "verdana" , sans-serif;">We started our own road to treatment...</span></span></div>
</div>
<div style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; margin-bottom: .0001pt; margin: 0cm; orphans: 2; text-align: justify; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;">
<span style="background-color: #f3f3f3; font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="background-color: #f3f3f3; font-family: "verdana" , sans-serif;"><br /></span></div>
<br />h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-61528014844424012562019-02-02T08:04:00.000+00:002019-02-02T09:41:23.346+00:00My Double Helix<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 16px;">I wrote and submitted "My Double Helix" for the </span><a href="https://www.carersuk.org/how-you-can-help/creative-writing/2018-competition" style="font-family: Verdana, sans-serif; font-size: 16px;" target="_blank">Carer's UK Writing Competition 2018</a>. <span style="font-family: "verdana" , sans-serif; font-size: 16px;">I wasn't successful; the success instead came from the cathartic process of writing from my heart at a time when nothing was certain.</span><br />
<span style="font-family: "verdana" , sans-serif; font-size: 16px;"><br /></span>
<span style="font-family: "verdana" , sans-serif; font-size: 16px;"><br /></span>
<span style="font-family: "verdana" , sans-serif; font-size: 16px;"><br /></span>
<span style="font-family: "verdana" , sans-serif; font-size: 16px;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhviUTpIB4Qz30sT9yGvW55OHbDejvPbmhmQlMHR1qp2IkC1aHdYGTFaa-vQ1ViARZxwcuV6Z5xVzmcC7P8f7XroMQJut8ThkpixRs6nqCakJ_V_N2_kseO_OfqKU5X0StKPPVlsjJGjJ4W/s1600/dna.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="418" data-original-width="800" height="334" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhviUTpIB4Qz30sT9yGvW55OHbDejvPbmhmQlMHR1qp2IkC1aHdYGTFaa-vQ1ViARZxwcuV6Z5xVzmcC7P8f7XroMQJut8ThkpixRs6nqCakJ_V_N2_kseO_OfqKU5X0StKPPVlsjJGjJ4W/s640/dna.jpg" width="640" /></a></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<br />
<div class="MsoNormal">
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">My double helix:<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Two strands winding, a twisting ladder of fate.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">All that I am and ever was, all that I will be;<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">A life woven in amidst my DNA.<o:p></o:p></span><br />
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Was this meant to be, a life of caring?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">A path decided in the womb, <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Empathy my very essence.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Or was it born of love, of family, of study?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">An affinity to nurture and protect led me to<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">The hallowed Hippocratic Oath.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Dedicating my life to heal and care, <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">A member of society obliged to all fellow man.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Work then marriage: all that I am, I gave to him. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">A family burgeoning, blossoming:<span style="mso-spacerun: yes;"> </span>two beautiful girls.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Hopes and dreams abundant<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Until that faulty helix delivered a blow to shatter futures
golden.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Suddenly, in a heartbeat, a carer to one and not to many: <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">My child, perfectly imperfect, disability ever present.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Life uncertain, complicated and busy, professionals
aplenty.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">The minutiae examined, probed and questioned.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">A career of juggling beckoned: constant and relentless.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">First and foremost a wife and mother,<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">But a carer, advocate and doctor, too.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Time and relationships dwindled: me alone, lost and last.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Nature and nurture led me to this moment, to this life.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">A carer reluctant and unresolved, <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">My empathy spent, my soul depleted, <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">No longer able to heal those seeking my help.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12pt;"><br /></span>
<span style="font-family: "verdana" , sans-serif; font-size: 12pt;">And then an epiphany; the doctor resigned to leave.</span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Time to disconnect from the many, <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">To enjoy my family and live as I was called,<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif; font-size: 12.0pt; line-height: 107%;">Faulty double helix winding through my core.<o:p></o:p></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span>
<span style="font-size: 12.0pt; line-height: 107%;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<br /></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-39908909552439643522019-02-01T16:37:00.000+00:002019-02-01T16:37:04.509+00:00Compassion<div style="box-sizing: border-box; font-family: Arial, sans-serif; font-size: 1.05em; margin: 12px 15px; overflow: visible;">
<b style="background-color: rgba(255, 255, 255, 0.95); box-sizing: border-box; font-size: 18.4px;"><br /></b></div>
<div style="box-sizing: border-box; margin: 12px 15px; overflow: visible;">
<div style="text-align: justify;">
<span style="background-color: rgba(255, 255, 255, 0.95); box-sizing: border-box;"><span style="font-family: Verdana, sans-serif;">Humans feel compassion. We respond to the distress and suffering of others. We hope to relieve their pain for the greater good and in turn ease our own souls, oxytocin coursing through our very being. </span></span></div>
<div style="text-align: justify;">
<span style="background-color: rgba(255, 255, 255, 0.95); box-sizing: border-box;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="background-color: rgba(255, 255, 255, 0.95); box-sizing: border-box;"><span style="font-family: Verdana, sans-serif;">Our words and our touch bring compassion to others. We know when to reach out and when to step back. It is part of who we are. It is part of human nature. Compassion is deep rooted within my very being. </span></span></div>
<div>
<b style="background-color: rgba(255, 255, 255, 0.95); box-sizing: border-box; font-size: 18.4px;"><br /></b></div>
</div>
<div style="box-sizing: border-box; font-family: Arial, sans-serif; font-size: 1.05em; margin: 12px 15px; overflow: visible;">
<b style="background-color: rgba(255, 255, 255, 0.95); box-sizing: border-box; font-size: 18.4px;"><br /></b></div>
<div style="box-sizing: border-box; font-family: Arial, sans-serif; font-size: 1.05em; margin: 12px 15px; overflow: visible;">
<b style="background-color: rgba(255, 255, 255, 0.95); box-sizing: border-box; font-size: 18.4px;"><br /></b></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwAmLhpVvs4NIZzsLKh5h4K1em9_hxhu8eGT2TUyfGRxD2BxUax4FXJbHkHrtyAwg4vupLOwrVMib49TUFm9vHZ_etm4vLhtoZjptoXijSejhqcbJx4CxpS8nxW4IcDLPzhzTgri9gbUKR/s1600/empathy-sympathy-600-420a.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="380" data-original-width="600" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwAmLhpVvs4NIZzsLKh5h4K1em9_hxhu8eGT2TUyfGRxD2BxUax4FXJbHkHrtyAwg4vupLOwrVMib49TUFm9vHZ_etm4vLhtoZjptoXijSejhqcbJx4CxpS8nxW4IcDLPzhzTgri9gbUKR/s1600/empathy-sympathy-600-420a.jpg" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: "georgia" , "times new roman" , serif; text-align: start;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: "georgia" , "times new roman" , serif; text-align: start;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: "georgia" , "times new roman" , serif; text-align: start;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Verdana, sans-serif; text-align: start;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><span style="font-family: Georgia, "Times New Roman", serif; text-align: start;">Compassion recognises the "me" in "you" and is the basis for both sympathy and empathy. Sympathy and empathy imply caring for another person, but with empathy, the caring is enhanced or expanded by being able to experience </span><span style="font-family: Georgia, "Times New Roman", serif; text-align: start;">the other person's emotions, putting ourselves into the other person's shoes.</span></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Of the two, empathy is a deeper feeling, forging a deeper and more meaningful connection, allowing for greater communication. Sympathy, however, can be just as honest and heartfelt. </span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><span style="font-family: Georgia, "Times New Roman", serif;">My compassion, my capacity to sympathise and empathise are vital, forming the basis of who I am</span><span style="font-family: Georgia, "Times New Roman", serif;">, the basis of my career. My compassion took me to medical school...</span></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Where is this going? You'll need to be patient. Please, be patient. </span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div style="box-sizing: border-box; margin: 12px 15px; overflow: visible;">
<span style="font-family: "arial" , sans-serif;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></span></div>
<div style="box-sizing: border-box; margin: 12px 15px; overflow: visible;">
<span style="font-family: "arial" , sans-serif;"><span style="font-size: 16.8px;"><br /></span></span></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-41308513184756996352018-05-30T10:43:00.001+01:002020-05-27T16:26:18.850+01:00The Road to Treatment: Dear First Minister<div style="background-color: white;">
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYh2PkEFvhSxjA7SNYzNS5LagMY8aRyv3-pqn9uaXpQFShbCnar56vGQjFyg2JYt8BHvsu7568sJt2rNPMnpi_YOkOcbiv0kdXPRGwx0sNwHK4V6XZvIXh-xGGkN-tJ0w9NiYiC7eZNKRU/s1600/michael+and+nicola.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="371" data-original-width="660" height="223" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYh2PkEFvhSxjA7SNYzNS5LagMY8aRyv3-pqn9uaXpQFShbCnar56vGQjFyg2JYt8BHvsu7568sJt2rNPMnpi_YOkOcbiv0kdXPRGwx0sNwHK4V6XZvIXh-xGGkN-tJ0w9NiYiC7eZNKRU/s400/michael+and+nicola.jpg" width="400" /></a></div>
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Dear First Minister</span></div>
</div>
<div style="background-color: white;">
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
</div>
<div style="background-color: white;">
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Two years have now passed since I attended a meeting with you, Michael Young and his mum Michelle, and Robert Meadowcroft, CEO MDUK. Michael presented to you a petition requesting for your help to ensure that boys living in Scotland with a specific genetic anomaly would have access to Translarna, a ultra orphan medicine for Duchenne muscular dystropy. ( <a class="x_OWAAutoLink" href="https://www.change.org/p/nicola-sturgeon-ensure-access-to-duchenne-drug-translarna-in-scotland" id="LPlnk978887" rel="noopener noreferrer" target="_blank">https://www.change.org/p/nicola-sturgeon-ensure-access-to-duchenne-drug-translarna-in-scotland</a> ).</span></div>
</div>
<div style="background-color: white;">
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
</div>
<div style="background-color: white;">
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">At this meeting we shared our concerns regarding the process the Scottish Medicines Consortium had undertaken during the review. As a result Dr Brian Montgomery undertook an independent review looking at the impact of the new SMC approach to assessing such drugs in 2014. <a href="http://www.gov.scot/Publications/2016/12/9192/0" target="_blank">Dr Montgomery's recommendations</a> were clear: to develop and implement a new assessment and approval pathway for true ultra-orphan medicines that restricts the role of <acronym style="border-style: none; border-width: 0px; margin: 0px; padding: 0px;" title="Scottish Medicines Consortium">SMC</acronym> to health technology assessment and places the responsibility for the final decision on availability elsewhere. This pathway was supposed to be implemented by Spring 2018; we are still waiting for clarity when this will be ready.</span></div>
</div>
<div style="background-color: white;">
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
</div>
<div style="background-color: white;">
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I am writing to you now as I continue to have concerns regarding the process the SMC undertakes when reviewing ultra orphan drugs. This time it is my daughter Eilidh's quality of life that potentially suffers from the decision making process. Eilidh has spinal muscular atrophy (SMA) and could benefit from Spinraza (Nusinersen): on the 7th May the SMC announced that Spinraza would be available only to infants with type 1 SMA. Eilidh has type 2. </span></div>
</div>
<div style="background-color: white;">
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
</div>
<div style="background-color: white;">
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I have been fortunate enough to be involved in all stages of the patient group submission process and PACE. I attended the final meeting. I understand the evidence and the health economics as I am a medical doctor specialising in general practice, palliative care and research; but even truer, however, I understand the real lived implications on quality of life as I am a mother to a nine year old with SMA.</span></div>
</div>
<div style="background-color: white;">
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
</div>
<div style="background-color: white;">
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I have attached <a href="http://touchandtickle.blogspot.com/2018/05/the-road-to-treatment-letters-to-my-msps.html" target="_blank">a letter sent out to be local MSP</a>, my regional MSPs and the Presiding Officer which details my concerns and invites them to a Fast Track to Treatment Event to be held in Parliament tonight . I will be attending the meeting - as will Michelle Young - and once more we will be sharing our concerns re SMC and access to ultra orphan medications. I understand that this invitation may come too late for you to be able to attend and so instead this email is more about raising your awareness of continued dissatisfaction with access to life changing medications for those with ultra rare diseases. </span></div>
</div>
<div style="background-color: white;">
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
</div>
<div style="background-color: white;">
<div style="text-align: justify;">
<br /></div>
</div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-35881573068336429352018-05-16T10:33:00.000+01:002018-05-30T10:35:56.109+01:00The Road to Treatment: Letters to my MSPs<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdyFm-w3YWmYQmCHUKG-6bUknVGaab5qG3I5v7S7dOE8jSwU7QsKotOqL0FLTx1o_I0W1gazNs70GR_ZPC7ADAwcy-c2CaKUWIIHIKzExWSOB_uUOI6J9XLClGuH2XR-07rNq3A5gGFCVH/s1600/Capture.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="511" data-original-width="1103" height="184" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdyFm-w3YWmYQmCHUKG-6bUknVGaab5qG3I5v7S7dOE8jSwU7QsKotOqL0FLTx1o_I0W1gazNs70GR_ZPC7ADAwcy-c2CaKUWIIHIKzExWSOB_uUOI6J9XLClGuH2XR-07rNq3A5gGFCVH/s400/Capture.PNG" width="400" /></a></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">
<!--[if !supportLineBreakNewLine]--><br style="mso-special-character: line-break;" />
<!--[endif]--><o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Dear MSP (local and regional)</span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Re: Access to spinal muscular atrophy treatment called
Spinraza for all types of spinal muscular atrophy<o:p></o:p></span></span></b></div>
<div class="MsoNormal" style="text-align: justify;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></span></b></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I am
writing to you regarding access to Spinraza, the first and only treatment for
5q spinal muscular atrophy (SMA). <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span lang="EN-US" style="font-size: 12pt; line-height: 115%;">5q
SMA is a rare inherited neuromuscular condition which includes childhood onset
Types 1, 2 and 3. <span style="background: white; color: #222222;">It causes
progressive muscular weakness and loss of movement due to muscle wasting. This
may affect crawling and walking ability, arm, hand, head and neck movement,
breathing and swallowing. </span>Without intervention, life expectancy for
infants with SMA Type 1, is less than two years. Children with SMA Type 2 are
never able to stand or walk, and live with a very complex and challenging
condition that has a huge impact on both them and their families. Over time, those
with SMA Type 3<span style="background: white; color: #222222;"> also experience
increasing difficulties with walking and standing. We estimate there are 110
children, young people and adults living with 5q SMA in Scotland and up to
1,300 in the UK overall</span>. My daughter is </span><span style="color: #333333; font-size: 12pt; line-height: 115%;">Eilidh is 9 years old and
has SMA Type 2. As her mother, but also as a wife, carer, advocate and doctor
(specialising in palliative medicine and general practice), I want to share my
experience of living with SMA and do so below. I am also chair of the Scottish
Council for MDUK and represent those living in Scotland with SMA.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="color: #333333; font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="color: #333333; font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></span></div>
<div style="background: white; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-element: para-border-div; padding: 1.0pt 4.0pt 1.0pt 4.0pt;">
<div class="MsoNormal" style="background: white; border: none; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 1.0pt 4.0pt 1.0pt 4.0pt; padding: 0cm; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="background: white; border: none; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 1.0pt 4.0pt 1.0pt 4.0pt; padding: 0cm; text-align: justify;">
<span style="color: #333333; font-size: 12pt;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">“So, what does this highly specialised day to day
management of SMA look like? The list of needs and care required is
endless. Our story is in no way unique but will in some way reflect what
individuals – children and adults - and families living with SMA will endure
daily.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="background: white; border: none; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 1.0pt 4.0pt 1.0pt 4.0pt; padding: 0cm; text-align: justify;">
<span style="color: #333333; font-size: 12pt;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br />
Each and every day Eilidh is dependent on other people and the equipment
provided for her. Her morning routine consists of moving from her profiling bed
to hoist to toilet to hoist and back to bed. What follows next is a battle as
to whether she wears her spinal jacket or not and then she is dressed – none of
which she manages on her own. She is then manoeuvred from bed to hoist to power
wheelchair to WAV and then to school. At school she requires 2:1 support for
personal cares.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="background: white; border: none; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 1.0pt 4.0pt 1.0pt 4.0pt; padding: 0cm; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="background: white; border: none; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 1.0pt 4.0pt 1.0pt 4.0pt; padding: 0cm; text-align: justify;">
<span style="color: #333333; font-size: 12pt;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br />
There is no reprieve at night: unable to move or turn nights mean my husband
and I are up perhaps 6-8 times when she is well but more often when she is
unwell. She doesn’t require non-invasive ventilation at this time but is most
likely to in the future when her muscles of respiration will struggle to move
air into her chest. We live with the constant threat of a chest infection. The
slightest cough and antibiotics and chest physiotherapy are commenced
immediately to avoid hospital admission and potentially ventilation.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="background: white; border: none; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 1.0pt 4.0pt 1.0pt 4.0pt; padding: 0cm; text-align: justify;">
<span style="color: #333333; font-size: 12pt;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br />
Eilidh has a worsening scoliosis of the spine and the future most likely means
a procedure, a spinal fusion, to ensure that her thoracic cavity is not
compromised which could result in further deterioration of her breathing, and
also to ensure a stable and comfortable sitting balance. There are risks of an
anaesthetic and ventilation: as a mother I am scared, as a doctor I am
terrified because I understand the true risks and implications for Eilidh and
for us.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="background: white; border: none; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 1.0pt 4.0pt 1.0pt 4.0pt; padding: 0cm; text-align: justify;">
<span style="color: #333333; font-size: 12pt;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br />
We are isolated within our extended family and community where access is
problematic – our adapted home feels like a prison. We receive self-directed
support but there are no agencies – even those commissioned by the local
authority - to support Eilidh, to support us, and no respite offered.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="background: white; border: none; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 1.0pt 4.0pt 1.0pt 4.0pt; padding: 0cm; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="background: white; border: none; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 1.0pt 4.0pt 1.0pt 4.0pt; padding: 0cm; text-align: justify;">
<span style="color: #333333; font-size: 12pt;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I am currently evaluating my career as maintaining
a life work balance with a child with additional needs child is nye on
impossible; trying to juggle hospital appointments, physiotherapy, and
hydrotherapy, to name but a few, is so very hard.<br />
<br />
As a mum I am aware that SMA divides our family and steals our time. I am
overwhelmed, exhausted, living with chronic sadness and longing for a life
imagined before SMA.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="background: white; border: none; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 1.0pt 4.0pt 1.0pt 4.0pt; padding: 0cm; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="background: white; border: none; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 1.0pt 4.0pt 1.0pt 4.0pt; padding: 0cm; text-align: justify;">
<span style="color: #333333; font-size: 12pt;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">What does this treatment mean for my daughter? The
progressive nature of SMA means that, for many, stabilisation is as valuable as
improvement and Spinraza may allow this for Eilidh. It’s the ability to raise a
chocolate bar to her mouth, to paint a picture, to knead pizza dough make her
day a good day - it’s these small things that we take for granted
that are important to a child living with SMA. For the adults I know living
with SMA it’s the difference in being able to control their power chair
independently, to raise their fork to their mouth, to swallow safely and cough
to clear their airways, and to move a ventilation mask when they are alone
overnight.”<o:p></o:p></span></span></div>
<div class="MsoNormal" style="background: white; border: none; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-border-alt: solid windowtext .5pt; mso-padding-alt: 1.0pt 4.0pt 1.0pt 4.0pt; padding: 0cm; text-align: justify;">
<br /></div>
</div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">On
31<sup>st</sup> December 2016, Spinraza was recognised as having the potential
to change the lives of all those with 5qSMA and was licensed in the USA. On 1<sup>st</sup>
June 2017, it was granted a license by the European Medicines Agency. It has now
been approved for treatment of those with all types of 5qSMA in many other countries
in Europe and the rest of the world. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">You
can imagine the high hopes of the SMA Community in Scotland when we heard that
Spinraza was to be considered for provision here. Imagine now how we feel
having heard the news on May 7<sup>th</sup> that the Scottish Medicines
Consortium (SMC) has approved it for use on the NHS in Scotland, but that this
is <a href="https://www.blogger.com/null" name="_Hlk513206500"><b style="mso-bidi-font-weight: normal;">only </b>for
children with SMA Type 1. Whilst we recognise this is a positive step forward
and a lifeline for these children and families, it is hugely disappointing that
children, young people and adults with Type 2 and Type 3, who wish to access
and could potentially benefit from this treatment, still don’t have this
opportunity. </a>We, along with SMA charities, have been calling for equitable
access for those with all these types of SMA and this was made very clear in
all the charities’ patient submissions and representations to the SMC. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-US" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></span></div>
<div class="MsoNoSpacing" style="line-height: 115%; text-align: justify;">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">There
is, though, a way forward. <a href="https://www.blogger.com/null" name="_Hlk513206671">In December 2016, the
Montgomery Review on Access to New Medicines recommended new appraisal
processes for ultra-rare disease treatments. SMA is designated an ultra-rare
disease which would mean that Spinraza would therefore have a much greater
chance of approval for <b style="mso-bidi-font-weight: normal;">all </b>childhood
onset types of 5qSMA under such a system. <o:p></o:p></a></span></span></div>
<div class="MsoNoSpacing" style="line-height: 115%; text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="line-height: 115%; text-align: justify;">
<span style="mso-bookmark: _Hlk513206671;"><span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I understand that these recommendations
have been accepted by the Scottish Government and are due to be implemented in
Spring 2018. It is now May.<o:p></o:p></span></span></span></div>
<div class="MsoNoSpacing" style="line-height: 115%; text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="line-height: 115%; text-align: justify;">
<span style="mso-bookmark: _Hlk513206671;"><span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I would be very grateful if you would
write to the Cabinet Secretary for Health and Sport to ask that the Montgomery recommendations
are implemented urgently so that Spinraza can be reassessed as a matter of
priority for SMA Types 2 and 3 under the new appraisal process. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></span></div>
<div class="MsoNoSpacing" style="line-height: 115%; text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="line-height: 115%; text-align: justify;">
<span style="mso-bookmark: _Hlk513206671;"><span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I would also be very keen for you to show
your support by finding out more about the urgency of access to new treatments
for people with muscle-wasting conditions and other rare diseases and discuss
how to remove the barriers to this by attending:<o:p></o:p></span></span></span></div>
<div class="MsoNoSpacing" style="line-height: 115%; text-align: justify;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="mso-bookmark: _Hlk513206671;"><b>Muscular
Dystrophy UK’s Fast Track to treatments MSP drop-in event: Wednesday 30th May,
6pm to 8pm, Fleming Room (Committee Room 3)</b></span><span style="mso-bookmark: _Hlk513206671;">,
hosted by Jackie Baillie MSP.</span></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="mso-bookmark: _Hlk513206671;"><br /></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="mso-bookmark: _Hlk513206671;"><br /></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="mso-bookmark: _Hlk513206671;"><br /></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="mso-bookmark: _Hlk513206671;">NB: this letter was based on a template written by MDUK and shared with other families living with SMA; it is therefore not all my own writing.</span></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="mso-bookmark: _Hlk513206671;"><br /></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="mso-bookmark: _Hlk513206671;"><br /></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="mso-bookmark: _Hlk513206671;"><br /></span></span></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-46920395065923662292018-05-10T09:37:00.000+01:002018-05-15T09:44:30.416+01:00The Road to Treatment: Cross Party Group<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK59adBIM-kc6gkhYEWEztF_p65wzfrwWTwepsQfWvwZ32iaXnFyG6X4BgnETMUDE8HQ52AFrhXiaam0qYGcINbLXNo58s4pQmm1Ag7VmDSdJpIQG_qdShmlAgFcXF7cgMnB9JPGnfhiK7/s1600/parliament.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><img border="0" data-original-height="1226" data-original-width="1600" height="489" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK59adBIM-kc6gkhYEWEztF_p65wzfrwWTwepsQfWvwZ32iaXnFyG6X4BgnETMUDE8HQ52AFrhXiaam0qYGcINbLXNo58s4pQmm1Ag7VmDSdJpIQG_qdShmlAgFcXF7cgMnB9JPGnfhiK7/s640/parliament.jpeg" width="640" /></span></a></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<br /></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Last night was the Muscular Dystrophy Cross Party Group Meeting at the Scottish Parliament. We were joined by Aileen Campbell, Minister for Health & Sport and Prof Alison Strath, Principle Pharmaceutical Officer for the Scottish Government. Spinraza was, as expected discussed.</span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">In summary, I shared by disappointment with the announcement; the errors in documenting the cost-effectiveness - therefore it not being possible to compare like with like between the types; the feeling that what we had discussed at the PACE had not being accurately conveyed to the SMC; and the need for the adult voice to be heard. These concerns were echoed by another member of the meeting who had gone through the same process with Translarna (a treatment for duchenne) 2 years ago and she was dismayed to hear that the process had not improved despite the publication of the <a href="http://www.gov.scot/Publications/2016/12/9192/0" target="_blank">Montgomery Review</a>.</span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The Minister and Prof Strath listened and genuinely seemed interested, taking on board all that was said. I can provide an update on what was said in reply.</span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The Montgomery Review on Access to New Medicines, published in December 2016, talked of new medicines for ultra-rare diseases being considered differently under a new appraisal processes. This process was supposed to be implemented by Spring 2018. It was confirmed last night byt Prof Strath that this process is still under consideration with no known timeline being confirmed. Biogen are keen for Spinraza to be reassessed after this new process has been implemented. This may therefore take some time.</span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It is hoped that in June of this the new Peer Approved Clinical System (PACS) Tier 2 will start, allowing for non-routine access to medicines on an individual basis. While each health board will operate PACS Tier 2 for their own area, a new National Appeal Panel will be introduced, for individual requests for access to medicines not approved by the Scottish Medicines Consortium. Prof Strath seemed to think that this was a more likely path for SMA types 2 and 3 in the interim.</span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Given the time frame and the urgent need for Spinraza to be approved for those with types 2 and 3 - to potentially halt further muscle weakness - Jackie Baillie, who chairs the CPG meeting,- supports the petition that I have lodged with Parliament pushing for an early reassessment and will help as she can. This petition should soon be available for circulation and allow us to promote awareness re SMA and Spinraza, but also show the strength of our voice.</span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The Minister and Prof Strath will feed back to the SMC about our concerns re erroneous data re cost effectiveness which is the most pressing of my concerns given the decision was based on cost alone (Prof Strath confirmed this). Prof Strath is also going to speak to me directly about the PACE and the Minister promises to continue the conversation.</span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The long and short of it, our disappointment has been shared, there is no quick answer but there is hope, and the conversation continues.</span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #1d2129; font-size: 14px; margin-bottom: 6px; margin-top: 6px; text-align: justify;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-5268515206385315892018-05-07T14:28:00.001+01:002018-05-09T09:24:14.492+01:00The Road to Treatment: Living with SMA<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The SMC's decision has been announced and I am hugely disappointed. </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I feel that the lives of those with SMA 2 and 3 have not been taken in to account, that the outcome based evidence which shows small functional benefit in those with types 2 and 3 with minimal risk has been underplayed - as only those living lives without SMA can do - and the cost benefit has been inaccurately calculated. I have been contacted by adults living with SMA asking why they weren't represented during the SMC's process. Their voices were heard and their stories told through the surveys conducted by the main SMA charities, but no adult was present at the Patient and Clinician Engagement (PACE) meeting. This was an oversight, one which I am annoyed about for not considering before: I, rightly or wrongly, felt I could represent all those living with SMA and I have carried that weight since the meeting. Here I share the story as shared at the PACE meeting.</span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvBfF0IfzJ4whZEpnMoWf080DnLB8oKwqVlT0f47lao9ajqq_1jJICKIOZpIdk7yhjf-j8syEIjHQeTod1Af2ijfFH9l4FQdvQJZ3oYwj6CURT_s8swNvR78SpOWWz1cS-aAHplFDk9joI/s1600/Spinraza-INTL-Carton-and-Vial_WhiteBackground.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvBfF0IfzJ4whZEpnMoWf080DnLB8oKwqVlT0f47lao9ajqq_1jJICKIOZpIdk7yhjf-j8syEIjHQeTod1Af2ijfFH9l4FQdvQJZ3oYwj6CURT_s8swNvR78SpOWWz1cS-aAHplFDk9joI/s400/Spinraza-INTL-Carton-and-Vial_WhiteBackground.jpg" width="400" /></a></div>
<h2 style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: small; font-weight: normal;"><span style="background-color: white;"><br /></span></span></h2>
<h2 style="text-align: justify;">
</h2>
<div style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-weight: normal;"><span style="background-color: white;">In mid-March I was invited to attend </span><span style="background-color: white;">a special PACE meeting at the Scottish Medicines Consortium in Glasgow. </span><span style="background-color: white;">This meeting formed part of the SMC's appraisal process for Nusinersen (Spinraza) and was an opportunity for the SMC to gain further patient information following the submission of the Patient Group Submissions by MDUK, SMA Trust and SMA Support UK. The details of what was discussed at this meeting are confidential but I wanted to share here my story of living with SMA which I hope in some way represents the lives of those individuals - babies, children and adults - living with SMA in Scotland. </span></span></div>
<div style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-weight: normal;"><span style="background-color: white;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #808285;"><br /></span></span></div>
<div style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My daughter Eilidh is 9 years old and has SMA Type 2. As her
mother, but also as a wife, carer, advocate and GP I wanted to share my experience of living with SMA. I am also chair of the
Scottish Council for MDUK and represented those living in Scotland with SMA.</span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">As you will know, SMA is a complex, progressive and rare muscle-wasting condition leading to the gradual
loss of the ability to walk, crawl, move, breathe and swallow and, until now,
there have been no
treatment possibilities. Management to maintain daily function and quality of
life requires wide ranging, highly specialised and costly medical support and
social care. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">So, what
does this highly specialised day to day management of SMA look like?<span style="mso-spacerun: yes;"> </span><span style="mso-bidi-font-weight: normal;">T</span>he
list of needs and care required is endless. Our story is in no way unique but
will in some way reflect what individuals – children and adults - and families
living with SMA will endure daily. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-left: 36.0pt; text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Each and every day Eilidh is dependent on other
people and the equipment provided for her. Her morning routine consists of
moving from her profiling bed to hoist to toilet to hoist and back to bed. What
follows next is a battle as to whether she wears her spinal jacket or not and
then she is dressed – none of which she manages on her own. She is then manoeuvred
from bed to hoist to powerchair to WAV and then to school. At school she
requires 2:1 support for personal cares.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: 36.0pt; text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="margin-left: 36.0pt; text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">There is no reprieve at night: unable to move or
turn nights mean my husband and I are up perhaps 6-8 times when she is well but
more often when she is unwell. She doesn’t require non-invasive ventilation at
this time but is most likely to in the future when her muscles of respiration will
struggle to move air into her chest. We live with the constant threat of a
chest infection. The slightest cough and antibiotics and chest physiotherapy are
commenced immediately to avoid hospital admission and potentially ventilation.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: 36.0pt; text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="margin-left: 36.0pt; text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Eilidh has a worsening scoliosis and the future most
likely means a procedure, a spinal fusion, to ensure that her thoracic cavity
is not compromised which could result in further deterioration of her breathing,
and also to ensure a stable and comfortable sitting balance. There are risks of
an anaesthetic and ventilation: as a mother I am scared, as a doctor I am
terrified because I understand the true risks and implications for Eilidh and
for us. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: 36.0pt; text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="margin-left: 36.0pt; text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">We are isolated within our extended family and
community where access is problematic – our adapted home feels like a prison.
We receive self-directed support but there are no agencies – even those commissioned
by the local authority - to support Eilidh, to support us, and no respite
offered. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: 36.0pt; text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="margin-left: 36.0pt; text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I am currently evaluating my career as maintaining
a life work balance with a child with additional needs child is nye on
impossible; trying to juggle hospital appointments, physiotherapy, and
hydrotherapy, to name but a few, is so very hard. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">As a mum I am aware that SMA
divides our family and steals our time. I am overwhelmed, exhausted, living with
chronic sadness and longing for a life imagined before SMA. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Nusinersen is the first treatment that improves outcomes for patients
with 5q SMA and has the potential to save the lives of babies with Type I and to
changes the lives of those with type 2 and 3. The CHERISH clinical trial in
older children with Type 2 / 3 reports significantly greater proportions of
children had clinically important improvements in motor function. What does
this mean in reality? Nusinersen slows down deteriorating muscle function and
weakness. The progressive nature of SMA means
that, for many, stabilisation is as valuable as improvement. <span style="mso-bidi-font-weight: bold;">The results may not be as dramatic as in
those with SMA Type 1 but small gains make a huge different to an individual’s
health, independence and enjoyment of life. For Eilidh, the ability to raise a
chocolate bar to her mouth, to paint a picture, to knead pizza dough make a her
day a good day <span style="mso-spacerun: yes;"> </span>- <span style="mso-spacerun: yes;"> </span>it’s these small things that we take for
granted that are important to a child living with SMA. For adults it’s the
difference in being able to control their power chair independently, to raise
their fork to their mouth, to swallow safely and cough to clear their airways,
and to move a ventilation mask when they are alone overnight.</span> <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Nusinersen
will not be everyone’s choice but everyone living with SMA, regardless of the
type - <span style="mso-spacerun: yes;"> </span>should be allowed to have the
opportunity to make such a choice in the hope that they can live the best possible
independent life. What I am asking is for the chance to add Nusinersen to the medical management of SMA so
that individuals, no matter their age, no matter their type of SMA, <span style="mso-spacerun: yes;"> have the choice of making the right decision regarding treatment for them, and can hope to </span>achieve a future of well being that has never been possible before.
<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div style="text-align: justify;">
<br /></div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-71625069024831049042018-05-07T09:38:00.000+01:002018-05-07T09:38:31.341+01:00The Road to Treatment: In the Beginning<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0f6VFkiq1zms1fGyHj-PTPCiKKGbiGP0eWZ4XSXnzjuLAaX9M6_Gg9JyxH6obNNb5V-FROE3x63ANMOq5OfmdTc3yIiYuHogul47-swplXU8DH9cdLMu3dKsH4iW-UO3UC1JsEDp1uFAw/s1600/spinraza+FDA.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="960" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0f6VFkiq1zms1fGyHj-PTPCiKKGbiGP0eWZ4XSXnzjuLAaX9M6_Gg9JyxH6obNNb5V-FROE3x63ANMOq5OfmdTc3yIiYuHogul47-swplXU8DH9cdLMu3dKsH4iW-UO3UC1JsEDp1uFAw/s400/spinraza+FDA.jpg" width="400" /></a></div>
<div>
<div class="text_exposed_root text_exposed" style="display: inline; font-family: inherit;">
<br /></div>
</div>
<span aria-live="polite" class="fbPhotosPhotoCaption" data-ft="{"tn":"K"}" id="fbPhotoSnowliftCaption" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px; line-height: 18px; outline: none; width: auto;" tabindex="0"><span class="hasCaption" style="font-family: inherit;"></span></span><br />
<div class="text_exposed_root text_exposed" id="id_5af0044695ebb4499130131" style="display: inline;">
<div style="font-family: inherit;">
<div class="text_exposed_root text_exposed" style="display: inline; font-family: inherit;">
<br /></div>
</div>
<div style="font-family: inherit;">
<div class="text_exposed_root text_exposed" style="display: inline; font-family: inherit;">
<br /></div>
</div>
<div style="font-family: inherit;">
<div class="text_exposed_root text_exposed" style="display: inline; font-family: inherit;">
<br /></div>
</div>
<div style="font-family: inherit;">
<div class="text_exposed_root text_exposed" style="display: inline; font-family: inherit;">
<br /></div>
</div>
<div style="text-align: justify;">
<div class="text_exposed_root text_exposed" style="display: inline;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">On the 24th December 2016 the FDA (U.S. Food and Drug Administration) announced that Nusinersen had been approved to treat spinal muscular atrophy. This was a MOMENTOUS moment for those living with this ultra rare disease in America and sure to start a chain-reaction around the world, allowing those with SMA to hope and dream of a brighter future.</span></div>
</div>
<div style="text-align: justify;">
<div class="text_exposed_root text_exposed" style="display: inline;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
</div>
<div style="text-align: justify;">
<div class="text_exposed_root text_exposed" style="display: inline;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">When Eilidh was diagnosed on the 27th May 2010 we had no hope of treatment and less chance of a cure. We were thrown into the depths of despair: without this hope, what of the future for our beautiful little girl?</span></div>
</div>
<div style="text-align: justify;">
<div class="text_exposed_root text_exposed" style="display: inline;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
</div>
<div style="text-align: justify;">
<div class="text_exposed_root text_exposed" style="display: inline;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Below is my post from Facebook, Christmas Eve 2016 - the anguish of being a mummy and a doctor:</span></div>
</div>
<div style="text-align: justify;">
<div class="text_exposed_root text_exposed" style="display: inline;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
</div>
<div style="text-align: justify;">
<div class="text_exposed_root text_exposed" style="display: inline;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
</div>
<blockquote style="text-align: justify;">
<span style="font-family: "courier new" , "courier" , monospace;">"In recent years, in the depths of my mind, all I have ever asked for Christmas is a miracle. And now there is a miracle and it's bittersweet and I cry such tears of anger over a diagnosis we never asked for. </span></blockquote>
<blockquote style="text-align: justify;">
<span style="font-family: "courier new" , "courier" , monospace;">As a medic I have doubts. No known long term sequelae. And it's delivered by spinal injection... </span></blockquote>
<blockquote style="text-align: justify;">
<span style="font-family: "courier new" , "courier" , monospace;">I haven't read the research, haven't critiqued it; I've avoided it on purpose. Why? Because my child is my child and I wouldn't subject them to multiple procedures and uncertainty of treatment. </span></blockquote>
<blockquote style="text-align: justify;">
<span style="font-family: "courier new" , "courier" , monospace;">For others this is a game changer, a profound live altering medicine. I will read more and I will campaign but I will also ask questions and ensure rigour.</span> </blockquote>
<blockquote style="text-align: justify;">
<span style="font-family: "courier new" , "courier" , monospace;">Despite my uncertainty, miracles do happen!"</span></blockquote>
<br />
<div style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Fast forward to November 2017 - nearly a year later due to delays in Biogen applying to the SMC - and the Scottish Medicine Consortium announced that they would be appraising Nusinersen. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>Hooray! </b></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif; font-size: x-large;"><b>Finally! </b></span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: x-large;"><b><br /></b></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">But this appraisal is a timely process: evidence is gathered from Biogen and clinicians involved in the care of those with SMA (hundreds and hundreds of pages just for one drug); patient group evidence is submitted from all interested parties (MDUK, SMA Trust and SMA Support UK); and a Patient and Clinician Engagement meeting to hear the real lived experience of those living with SMA. </span></div>
<div style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Today at 2pm the SMC will release their decision. It will appear in black and white on their web page, changing lives forever in such a matter of fact way. I have read the evidence, I have been part of the process, and I nervously await the decision. Is this the moment our miracle becomes a reality? </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
</div>
h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0tag:blogger.com,1999:blog-2492627970326720041.post-5319996178992035052018-05-07T09:26:00.000+01:002018-05-07T09:26:44.557+01:00Off-Air<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-1G5L40DIlyc2o5Jk6lln7rkVj0MaxJx1N9THhM4CLIeVEpYnkx4qBMz2zGjWMuwTEj7mjWPxi725QpDp7d0_fYr3wjN80llQzUkXxeX45APXfk7sJn6q9cCErstg-Mnddt1B6LtctzMw/s1600/radio-silence-L-M8qvlZ.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-1G5L40DIlyc2o5Jk6lln7rkVj0MaxJx1N9THhM4CLIeVEpYnkx4qBMz2zGjWMuwTEj7mjWPxi725QpDp7d0_fYr3wjN80llQzUkXxeX45APXfk7sJn6q9cCErstg-Mnddt1B6LtctzMw/s640/radio-silence-L-M8qvlZ.jpeg" width="640" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<br />
<br />
<br />
<br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I never meant to be away for so long.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">My story has continued off-air,</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">In private,</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Only heard of by family and close friends.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I didn't stop writing,</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">or thinking about writing,</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">or ruminating over life:</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I just couldn't commit it to the public space,</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Scared that by being open</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">the reality would hit harder.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">However, I</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Cannot remain</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Off-Air.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">There is a story</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Unfolding.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">The story of</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Miracles</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">and </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Medicine.</span><br />
<br />
<br />
<br />h0peful mummyhttp://www.blogger.com/profile/03065600149249551888noreply@blogger.com0