Friday, October 12, 2012

One Day, One Conference - facts and figures

Last weekend, for the first time as a family, we attended the Scottish Muscular Dystrophy Campaign Conference at the Beardmore Hotel in Glasgow.  This was my third conference and this year I felt more involved and more able to listen, ready to stand tall and speak out because time is a great healer

The MDC is very much a grassroots organisation, depending on the front line workers - the fundraisers, the donors, the volunteers and the supporters - and it is with their help that the MDC is leading the fight against muscular disease.  It is the hope of the Campaign and this was voiced by the CEO Robert Meadowcroft that it becomes stronger and more effective, building on the foundations of the front line workers, improving care and support for families affected by and living with neuromuscular conditions.  Research is ongoing and the MDC is helping realise the potential of research but at the same time reminding us that we need to proceed cautiously because with research can come the false hope of totally curative treatments: while a cure may be found one day, research into many neuromuscular conditions remains in its early stages, focusing on the basic genetics of the disease, the science behind the conditions and potentially life altering - but not curative - treatments.

Jackie Baillie, a member of the Scottish Parliament, Chair of the Cross Party Group on Muscular Dystrophy, and a great advocate for independence for disabled people, took to the floor - and took out the IT system, too! - rallying us to "keep the pressure up", through "nagging" and with tenacity - on parliament and on the government, ensuring that we guard the advantage already gained through hard work and research, especially with regards to the three full time care advisers promised for Scotland.  The 2 neuromuscular care advisers currently working in Scotland have huge work loads, covering a vast geographic area, and  play integral roles in those living with neuromuscular conditions, enabling them to access the care that they need and deserve.  Unfortunately, despite advertising the role in the north of the country, there has been no new adviser appointed and the people in the north of Scotland are losing out.  Personally, I don't know where we would be without our care adviser; she has been a real lifeline and I know that having improved access to neuromuscular care advisers would change the lives for many of those living with neuromuscular conditions.

Jackie Baillie went on to speak of financial restraints and the proposed NHS cuts across Scotland amounting to approximately £319 million; this equates to 10,000 staff and,  to date, 5500 NHS staff  have already been payed off, 2500 of those being nurses which, obviously has a huge, direct impact on patient care and the ability to deliver care standards.  The nurses are the back bone of the NHS, essential to its day to day running and survival and we seem to have all of our priorities wrong: free prescriptions for one and all costs Scotland £61 million a year (and is likely to escalate) - this money, and I wholeheartedly agree, could be spent better, for example on 2000 nurses who would provide care and support, improving the lives of patients who are currently - surely - feeling the brunt end of dilutional rationing.

Gary Kernahan, the head of volunteer fundraising, told us of the year past and of some of the fundraising that was done for the MDC.  100 daredevils (crazy people!) - including our very own care adviser! - took to the sky on the 29th February to fundraise and he shared the story of  Hannah and her family who raised over £3000 in memory of her brother Adam who died of duchenne muscular dystrophy.

"Make Today Count": if you are keen to skydive, and would like to be part of "Team 100", put the 1st March 2013 into your diary and register to "Make Today Count" - and all for the bargain price of £29... do you dare?  It's all for a great cause!

One thing that Gary said has really struck home and it's amazingly simple:
"If every family affected by muscular dystrophy or a related neuromuscular condition raised £29.24 this year we would meet the fundraising requirement set for Scotland’s contribution to fund our research work and support services."  

WOW!  Isn't that amazing - £29.24 is really nothing, even in these times of austerity, and could make such a difference to someone's life - will you take up the £29.24 challenge and fundraise for the MDC?

And to finish, as Robert Meadowcroft said, "We are on our way - together!"

Together as a campaign, as an organisation, our voice is stronger, shouts louder and reaches further, echoing into the lives of those regardless of whether they are living with neuromuscular disease or not.  Our voice is effective and does not go unheard.  The MDC is growing and maturing over the years, investing in the people living with neuromuscular disease, supporting the families affected, raising awareness of life altering diseases, funding invaluable research, trailblazing the way towards a better future and providing advocacy for those who need to be heard; I am proud - and humbled - to be part of the Muscular Dystrophy Campaign.

To Follow:
One Day, One Conference - the inspiration
One Day, One Conference - my day 

1 comment:

Midlife Singlemum said...

It must give you a lot of strength to be part of a conference like this. I can feel through your writing how much this has given you. I can't see any reason not to reach your target if every family has to send only 30GBP. Good luck with the campaign. xx