Monday, September 23, 2013

In Control: at Featherdown Farm

August 2013 - School Holidays and Glamping...

Glamping with Featherdown FarmsTracey, Steve and their adorable boys at Lipley Farm proved to be a real hit with our family; they very much welcomed us on to their farm and we enjoyed every minute.
The five pitches stand sheltered by Rushymoss Wood and face into the fire pit - which would prove very popular for marshmallow toasting - and the clay oven (for pizza night!) opposite.  The girls raced in - E being carried - to explore the cupboard bed, the bunkbeds and the toilet - yes! in that order! - already bickering about where to sleep.  We lit the wood burner outside, warmed through our soup and dined alfresco, all the time feeling relaxed and nurtured by the surrounding countryside.  The girls quickly befriended the family next door - "she's my best friend ever!" - and ran amok through the grass, racing wheelbarrows, chasing chickens and swinging on swings.  As dusk fell, the campfire was lit and marshmallows made for happy children (and adults too!).  The sky darkened and the girls quietened, bed and gentle slumber calling to them: it was my turn to read and, for the first time in a long while, with candles burning bright, The Velveteen Rabbit as our companion, I felt real peace - the countryside does me wonders... 
The next day... Day trips and tantrums turned themselves around and with the farmer's stew on the campfire, we walked up to the farm for our farm tour.  Tracey and Steve are so obviously passionate about the farm and their livestock - Steve even knows each cow by it's freeze brand! - and it was great to see them enjoying the tour too.  We met all the animals that afternoon and N got up close and personal with some of the herd when she went milking.  The farmer's stew - which we had ordered at the time of booking and had come with meat from a local supplier, vegetables, wine and everything we would need to cook it slowly over the camp fire - was DELICIOUS!  all be it a little over cooked as we had left the pot too low over the fire while away on the farm walk, but it was our first attempt at open fire cooking...
Another restful sleep and time to pack up - a day early as we needed to get back up the road to get the girls back into some resemblance of a routine for school starting just three days later.  The girls had had a blast - and yet were quick to tell me that it wasn't proper camping as they hadn't slept in sleeping bags on the ground! - D had fought his fear of flying beasties and bugs and lost not so very admirably and me?  I had refound my love of the great outdoors, found true peace for the first time in what seemed like ages and had a wonderful (accessible-ish) family holiday.
So a big thanks to Tracey, Steve and Featherdown Farms for our holiday - thank you for making us feel welcome, for sharing a snippet of farming life with my city girls (because you can take the girls out of the city, but you can't take the city out of the girls!), and for looking after Snappie overnight as she slept and recharged for the day ahead - we had a brilliant adventure and hope to be back!

 our view

our "home"

dining alfresco
marshmallows on an open fire
more marshmallows...

the infamous cupboard bed or hidey-hole

campfire farmer's stew - yummy!

off for a farm walk
 which came first, the chicken or the egg?

oink, oink, oink!

cute little calves

I wonder what her name is?
milking with steve

E's new mode of transport - who needs Snappie!

craft time

relaxing after a hard day's play

homeward bound

Thank you also to In Control and East Renfrewshire Local Authority who made this holiday a possibility.
See the links to the other In Control Pilot posts:

In Control - taking the first steps

In Control: at Featherdown Farm
In Control: the experience overall - the good, the bad and the ugly

Giveaway! The Baby Show

With friends having babies and family getting engaged and married (and having babies in the future!), the circle of life continues and so does the need for top tips for parents new and old and the quest for equipment - breast pumps, bottles, buggies, cots, - and .  With N and E, I didn't make it along to a baby show, but I would always recommend a day out and a nosey at all things baby to pick up ideas and go all gooey and clucky. 
Today, as part of the BRITAX Mumbassador programme, I am excited to announce a Giveaway! for two tickets to The Baby Show:

"Taking place from the 25th -27th October at Kensington Olympia, The Baby Show is the UK’s leading pregnancy and parenting event. There will be hundreds of stands, which will feature anything and everything baby and toddler-focused – from quirky new inventions to showcases from all your favourite nursery brands.
There will also be hourly guest speakers including sleep expert Jo Tantum, feeding and nutrition expert Annabel Karmel, and parenting guru Sir Robert Winston. With giveaways and special offers galore, make sure you don’t miss out!
To celebrate BRITAX’s continued involvement with the Baby Show, I’m really excited to be able to give away a pair of tickets to the next Baby Show in October! BRITAX’s stall will be stocked with all the latest BRITAX and BOB products including DUALFIX, XTENSAFIX, KIDFIX XP SICT and the B-MOTION 4, with experts on hand to explain the latest technology and take you through all the car seats and strollers on offer.
The tickets entitle you and a friend to full access at the Kensington Olympia Baby Show on a day of your choice. Little ones get free entry so they’re more than welcome to come along too!"
Please use the Rafflecopter form below to enter and answer one simple question to be in for a chance of winning 2 ticket to the baby event of the year. 
Entries will close at 12pm on Friday 11th October.
The prize is non-transferable and there are no cash alternatives. 

a Rafflecopter giveaway

Tuesday, September 10, 2013

"I'm here to keep you floating"

Sometimes I hear lyrics which stay with me, replaying on loop, with me wondering why?   This song, to me, is about friendship and what we can offer those around us, those we love. We would do anything for them: "move the mountains for you", "keep you floating", through the good times and the bad times, through laughter and delight to heartbreak and tears. That's what friendship is about, isn't it?  The last three years have been tough (and that's a blooming understatement really!): I have seen friends come and go, I have not always been their for my friend when they have needed me, but I appreciate the friends I have in my life at this present moment and those friendships are about giving and receiving.  We are all floating along, part of something much bigger than ourselves, and it's not so daunting knowing (and hoping) that our friends are right by our side.

"Wherever you're standing, I will be by your side
Through the good, through the bad, I'll never be hard to find.
So wherever you're standing, I will be by your side
Through the good, through the bad, I'll never be hard to find"

Monday, September 09, 2013

Inner Strength


A colleague approached me last week and asked how E was.  
She went on to say,
"I don't know where you get your strength..."
My inner voice answered
"I don't.
I can't."
but I heard myself reply,
Coffee and cake."
Definitely, but I needed to lighten the mood;
I wanted to keep the doors to my heart closed
and the truth unspoken.
Because it's not always necessary to share your burden;
sometimes there is nothing else for it but to 
keep moving forward,
one conversation at a time.

Thursday, September 05, 2013

Hospice Provision & Respite for our Young Adults

Following on from CHAS' announcement of its withdrawal of services to those over the age of 21 and my previous post , here I will post about current hospice provision and the absolutely neccessity of respite care.

Even now, with new hospices being built in the UK, little consideration has been paid to the provision of an appropriate environment and adequate services for this specific younger patient group.  The physical environment is often not geared to younger patients and their families; in the case of those living with neuromuscular disease, nurses are not trained in ventilation; and day services do not have programmes tailored to the young.   In NHS Greater Glasgow and Clyde alone there are approximately 200 young people living with life-limiting or life-threatening illnesses in the 16-19 age group.  They have complex needs and would benefit from accessing specialist palliative care services, at home, in hospital and in a hospice.

CHAS Chief Executive Maria McGill readily acknowledges that adult hospices are largely set up to cater for much older adults suffering from cancer and other terminal illnesses. 

Rhona Baillie, CEO for the Prince and Princess of Wales Hospice openly acknowledges that their "current facilities are not acceptable, or appropriate, for younger people and less than ideal for family support.

The Prince and Princess of Wales Hospice in Glasgow realise the growing need for a transitional service and according to a letter from their Chief Executive published in The Herald, is developing a new model of care, with a lower age of referral, which will offer support through transition and recognise the need for services appropriate for younger people, including single rooms and a young person’s lounge, ease of accessibility and an out-patient programme geared for a young target audience.  I wonder, however, if these beds alone will be sufficient to meet demand.

"the feeling of home"

With regards to the provision of respite, respite is absolutely paramount to support our carers; it is not a luxury but a necessity.  Every day across the UK 6000 people become carers, adding to the 6.5 million who are already caring for their loved ones. 516,000 of these carers are in Scotland.  8% of which are caring for their disabled children, providing physical, practical and emotional support, and help with self-care and medication twenty-four hours a day, three hundred and sixty-five days a year.  One in eight will combine work with caring for their loved one.  Carers struggle to maintain friendships often finding themselves isolated; many have to give up work or reduce their working hours because of their caring role; 61% have suffered from depression, with 92% feeling more stressed as a result of being a carer (statistic from the report, “Prepared to Care? Exploring the impact of caring on people’s lives”).  Respite also benefits the individual affected by neuromuscular disease as they are able to gain some independence from their family, while also socialising with peers with similar conditions.

Respite care is notoriously difficult to come by, not only for those living with neuromuscular disease but those with chronic disease too.  Their needs are not addressed by the acute services (nor would it be appropriate to admit them to the acute hospitals) and hospice beds are in such demand that respite cannot be provided there; the result is that respite needs may only be met in nursing homes or specialist centres whose environments may be inappropriate for the care of young adults.  The provision of respite is an area that urgently needs to be considered to avert a potential crisis in the making given that the United Kingdom has an ageing population, increasing numbers living with chronic disease, and those with life-limiting diseases living longer, resulting in an increased burden of care on family and friends.

With adults hospices not suitable for young adults and no respite care available within these hospices - or anywhere else for that matter! - what does the future hold for the young adults affected by CHAS' announcement?  What can be done for these young adults desperately in need of care?  How do we make a difference to the lives of those affected?  I'm not sure but will put some thoughts together in my next post.

An upper age limit for CHAS

Over the next few posts I am going to write about something which is personally and professionally close to my heart that not only effects many families living in Scotland with children and young adults with life-limiting and life-threatening illnesses, but also has the potential to affect Eilidh, her well-being and my family.

I should point out that all views noted here are entirely my own.

Today I intend to give you the facts: 

Earlier this year the Children’s Hospice Association Scotland (CHAS) announced their decision to withdraw its services to those over the age of twenty-one, affecting those who are surviving and living longer with diseases of childhood and life-limiting illnesses.  CHAS chief executive Ms Maria McGill wrote to the families of more than 100 young people in May inform them the charity can no longer cater for young people aged 21 or above, and services will be gradually withdrawn from this group over the next three years.  As a mother to a child with a life-limiting neuromuscular disease, as a member of the Scottish Council for the Muscular Dystrophy Campaign and as a specialty doctor in palliative medicine, I would like to share my concerns over the lack of transitional planning to date for young adults living with neuromuscular disease, the shortage of suitable care facilities for this transition, and the shortfall in provision of respite services for their families.

Neuromuscular disease affects approximately 5,984 children, young adults and adults across the Scottish population; 4835 of those affected are over the age of 16.  The decision of CHAS has caused much anger and concern amongst those living with neuromuscular disease currently receiving support from their two hospices in Scotland and who feel have not been consulted in the decision making process, but has also brought to the fore the problems which exist in the provision of transition services in the sixteen to twenty five year old age group.  The shortfall in Scotland’s adult respite care provision was also highlighted by the Cross Party Group, chaired by Jackie Baillie MSP, at Parliament, and she invited the representatives from CHAS to outline their plans for the transition of these young adults over the next three years.  

Neuromuscular disease is an over-arching term for a cohort of life-limiting and life-threatening conditions and as such is suitable for palliative care input.  The role of palliative care in neuromuscular disorders is invaluable with an approach that is aimed at improving the quality of life of patients and their families facing the problems associated with life-limiting and life-threatening illness, integrating not only the physical care of the individual but also the psychological and spiritual aspects too.  There should also be provision made to offer on-going support not only for the patient but also for their families.  In the case of children, the World Health Organisation’s definition makes it clear that the total active care of the child and their family begins at diagnosis, regardless of whether they are receiving treatment or not, and continues through death and bereavement.  While the ACT goes as far as including the provision of short breaks or respite care which is of importance to the issue raised in this letter. To re-iterate this, the Living and Dying Well – Short Life Working Group 6 “Recommendations for service configuration for adolescents and young adults with palliative care and end of life care needs” recommend the provision of a  palliative care service that is accessible to all allowing them to receive sustainable, holistic and family centred care and support.  As part of this services must “facilitate access to planned short breaks at facilities where there is very good holistic nursing and medical care, so as to provide respite for adolescents and young adults with illnesses with long disease trajectories, and their families”.  Young adults should also have access, whether it be clinics or as a day patient, to adult hospices when specialist input is necessary.

Currently CHAS provide care for those living with neuromuscular conditions. In a study published in 2011 (Fraser LK, et al. Eur J Paediatr Neurology 2011; 15 (4): 326-330) 17% (mean, with a range of 5-35%) of all UK children's hospice admissions (73% of which were for “planned stays”) were for individuals living with neuromuscular disease: this is in no way an insignificant number.  The age of discharge from the service ranged from 18-35 which is in line with CHAS proposing that they can no longer cater for those over the age of 21.  With regards to the transition of these young adults, the lack of provision of transition services is not new and has been highlighted in recent years.  The Cross Party Group in the Scottish Parliament on Palliative Care that met in March 2012 stated that “children and young people (are) living longer with “diseases of childhood” and (are) living with increasingly complex needs”.  With regards to transition, it was stated that CHAS was “working with other organisations, including hospices, to look at improving care for those between 18 and 25”.  In their letter advising families of the withdrawal of services CHAS has pledged to work with families to ensure that alternatives are in place; however, Chief Executive Ms Maria McGill readily acknowledges that adult hospices are largely set up to cater for much older adults suffering from cancer and other terminal illnesses. 

With the facts given here, I will go on to discuss current hospice provisionand respite care in my next post before concluding with a post on how I see the future for these young adults as the struggle to emerge from children's services into the fog of transition.

Wednesday, September 04, 2013

Keep Breathing

The Lady of Camptoun is now a married woman,
a superb sister-in-law
 and a wonderful auntie too.
She was worried about us and sent us her love.
She had heard a song and thought of me;
she sent the link and as I listened
the tears fell.
What a truly beautiful song.
I replied to her,
"All we can do is keep breathing:
subconsciously -
until a moment when you can't help 
but be aware of every breath of life taken in."
An ill child
or a dying patient,
and you focus on 
every breath
Life carries on
and all we can do is
keep breathing.
"But all that I know is I'm breathing
All I can do is keep breathing
All we can do is keep breathing now
Now, now, now

All that I know is I'm breathing
All I can do is keep breathing
All we can do is keep breathing

All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing

All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing now"

Tuesday, September 03, 2013

24hrs on the NHS

29th August;
24 hours bed and breakfast on the NHS

with nasal flare,
tracheal tug,
subcostal recession,
and intercostal too.

porters and
patients galore.


parental worry,
fear and concern;

a family together;
a daughter,
a daddy
and a mummy
needing each other,
human contact,
a friendly face.

and all for 
"a bit 
of the 
lower lobe
right lung"

a chest infection;
- like Eilidh! -
with the added