Mark, I’m very sorry for your loss. Supporting a loved one through advanced Multiple Sclerosis is incredibly demanding, and it’s not uncommon for caregivers to feel isolated—especially in the later stages where support services can be more limited.
Regarding “MS Help” from MS Society, it appears to be a newly developed initiative aimed at improving access to information, guidance, and possibly more personalized support for people affected by MS and their families. As it’s just launching, detailed feedback from users may still be limited, but the intention seems to be to address gaps in care—potentially including those more advanced stages you’ve described.
Whether it fully meets the needs of end-stage patients and caregivers will likely depend on how the service evolves in practice. It may be worth reaching out to them directly or following early user feedback over the coming months.
Your experience highlights an important and often under-recognized area of care. I do hope this initiative brings more comprehensive support to others going through similar circumstances.
Alas. No new support. No specifics on Advanced MS or end stage support other that the same generic support available to all. I think it needs more in order to help at this stage. I know the main support is still local NHS but the MS community and the MS charities should be in support too otherwise you are lost to the community at the point of greatest challenge. I’m yet to see anything at this most severely affected end of things. It is like it doesn’t exist. Or it does but no-one wants to be in support, too involved, too difficult.