Philip Dunne MP, Minister of State for Health has announced that NHS England will develop an implementation plan for the commitments outlined in the UK Strategy for Rare Diseases that it can influence by the end of the year.
This is a fantastic result for patients and families affected by rare, genetic and undiagnosed conditions in England and across the UK, and will provide the rare disease community with an effective tool to hold the Government to account to improve services and care for patients.
Brilliant! Much better than I expected, and the inclusion of information about the many who have problems with benefits, is excellent. Many thanks to Lupus UK and all who contributed 🌈
Wales and Scotland already have a rare disease strategy! I was at one of the early APPG's discussing this representing RAIRDA ( Vasculitis UK, Lupus UK and Scleroderma ) . Much was made of the fact that Scotland and Wales already have a rare disease strategy but England didn't, they weren't impressed when I pointed out that rare diseases were even less well catered for in Scotland and Wales ( I live in Scotland ) than England.
Part of the problem is that diseases like Lupus and Vasculitis are part of the 20% of rare diseases that aren't mono genetic. Most rare diseases are single gene and affect children disproportionately. The Rheumatic rare diseases require a different strategy as there are excellent treatments for most of them, the problem is accessing the right Consultant.
You are so right! I'm not sure why I didn't know this about Wales. Especially when I've been in touch with my MP and health board about my own care. Strange they never mentioned it. But accessing the correct specialist consultants is definitely my problem! Thanks Keyes.
Yep I'm cynical as well and I'm in Scotland. Sjögren's has to be the worst served of the rheumatic diseases in U.K. - BSSA not even listed on the RAIRDA charities I notice.
There are no targeted treatments available anywhere for people with primary Sjögren's and most of those who are diagnosed are middle aged women so I'm quite sure these facts are connected. Even the UK Sjögren's register seems to have stopped. Can't see anything changing anytime soon.
Ps in response to my letter - I heard back from my MP's secreatary requesting more information about myself before they could consider my case. Sorry I wrote before you added the letter Paul - but delighted the discussion was fruitful anyway (despite my overall cynicism!)
". Please also provide any relevant reference numbers relating to your case (e.g. National Insurance number) and/or scanned copies of any relevant paperwork, as these will help me to progress your case as quickly as possible."
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RAIRDA are actively looking for partners Twitchy and Sjorgrens would be a good fit. They haven't been refused membership!
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Ach I know Keyes. Admittedly I've found so far that the BSSA aren't very proactive with their membership and have no HU. I did write to them about joining in the coalition of rare diseases and they said they were entering into discussions - but I don't know if anything came of this.
As you know I'm a proactive kind of person and did attend one meeting but found it deeply depressing. The guest speaker was from the big arthritis charity and didn't even know how to pronounce Sjogren's, spoke only about RA and OA. Everyone seemed sort of despondent - like a room full of Eeyores with sunglasses on and eye drops and salivex rattling about. It was a far cry from my old Scottish RA gang and no one had even heard of Mycophenolate. Sorry to detract from larger issue of this post but I try and raise awareness here because nowhere else to go.
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