Election asks
Election season is upon us once again and undoubtedly many of you will have hopeful candidates knocking at your door, asking for your support. At a local support group on The Wirral I was chatting to some of the attendees about the impending election and we all agreed there are not too many politicians really thinking about the needs of people who have a rare and life limiting condition like multiple system atrophy. So I think it is our job to make them think! 
Here at the office we also wondered what would we say when people rock up to our doors? and a few ideas were quickly gathered. First thing however is to ask the basic question -What is their party’s current position with regard to Rare diseases? Oh, they don’t have one, well perhaps they might like to think about these ideas from our colleagues and supporters:
- How will they ensure shorter wait times? The condition we are dealing with is a progressive life limiting disease, so waiting times are the stuff of nightmares, they should be abolished when people are trying to get some basic benefits to support them.
- What will their party do about social care and special equipment? – more funding is required to ensure everyone gets the care and the equipment they need when living with a rare disease.
- How will they address the need of carers for some time off? – Government is always keen to support people being able to remain in their own home, but carers need some time off, how will they fund respite care?
- How will they ensure the future of funding for research into rare conditions? MSA is so rare we rely on research being run in collaboration with our overseas and UK colleagues, how can we ensure this will continue if there is a ‘no-deal’ Brexit?
- How will their party ensure funding for the NHS is continued in the long term? This question is to particularly address the need to increase nurse recruitment – currently MSA nurse specialists are funded entirely by the funds our amazing supporters send to us.
- How can they ensure that someone with a rare condition such as MSA gets the support of a trained professional who can co-ordinate all the different aspects of care? People with MSA might have to see upwards of 8 different specialist services to have their needs met, how can the principle carer manage all these different appointments on their own, as well as care for their loved one?
I am quite sure you will have plenty you might want to add to this list, but perhaps this can be a starter for you to ensure that no one that knocks on your door is in any doubt about the level of support people with MSA need and currently are having to fight tooth and nail to get.
Please encourage all your friends and neighbours to vote as well, share this blog with them if possible. It is only when we we turn out to vote can we really hope to influence policy makers.
Best of luck!
Karen Walker, Chief Executive
Disclaimer: The views and opinions expressed in the blogs published on these pages are those of the authors and do not necessarily reflect the official policy or position of the MSA Trust.
