@gpeps 

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gpeps

What's your experience of MS services?

Apologies, this is a UK-focused post, but all perspectives welcome. There is a well documented variance in MS services from one area of the UK to the next. The UK MS Society has referred to this as a postcode lottery. What are your experiences? Do you feel lucky to be under the care of your MS centre, or would things be improved if you lived elsewhere? This variance might be relating to access to DMTs, or access to specialist healthcare professionals such as psychologists, dieticians or OTs. It may also relate to the speed in which you're seen when you experience new symptoms. Or it could be about the level of support people with progressive MS receive. Do you feel you have had access to the full range of DMTs and services when you needed them? If not, please do share your experiences. Do you have any ideas or suggestions of how the variance in MS care in the UK could be reduced? Are there examples from other countries we can learn from to standardise care across the UK? Any suggested solutions very much appreciated. I am attending a meeting in a couple of weeks - https://multiplesclerosisacademy.org/wp-content/uploads/sites/3/2018/10/MS-Service-Provision-in-the-UK-the-Way-Forward-draft-5.pdf - any insights you could share would be greatly appreciated. Thanks for your help, George
@Vixen

Hello @gpeps, this is something I feel really strongly about. My sister and I live in London and were pretty much diagnosed at the same time nearly 2 years ago. I have RRMS and she has PPMS. My care has been excellent. I have an MS nurse who of course has direct access to my neuro. My sister, however, doesn’t have an MS nurse as her local authority don’t provide this service. Almost from the outset, she was left to her own devices and rarely has any approintments. She has severe foot drop. Through Shift, which I use everyday, I found out about a FES machine and sought ideas via posting. I think @stumbler posted a link to where FES services are located. She contacted a centre, got fitted up (although had to pay privately) and is now essentially walking again and able to get around. I can’t deny that I feel angry about the fact that, had I not been on Shift all the time, we might not have discovered that there is help available out there; you just need to know how to access it. A while ago I researched where the closest MS Society charity shop was as I’d had a clearout. There actually aren’t that many. But this particular branch in West London provide a local ambulance service for folks with MS, helping them stay connected and to be able to attend appointments. What an amazing service, but again, you’d have to live in the area to be able to access this provision. Anyways, that’s my story, hope it’s relevant! X

@Stumbler

@gpeps , how do they expect to create consistency in the UK, when England, Scotland and Wales are autonomous bodies? We are no longer a United Kingdom......