If you haven’t seen it, you might find this interesting:
This is very interesting, thanks for posting.
This will come as no surprise to many people on here. Although of course there is good care, in my experience care it is often disjointed.
i did find it interesting, thanks. I have had MS for ~13 years, I do get care from the NHS and I do get DLA (at the moment unless it changes?). I am unemployed and I am 55. Should I be looking elsewhere for any ‘help’ - I don’t know? - Fortunately (maybe the wrong word), my GP has close relatives who have MS and although obviously confidential (BUT I’M NOT NAMING, NAMES) My GP did divulge to me that he is likely (possibly) to ‘develop’ MS himself?
Marcus.
This is interesting AnnieB, are they trying to warn us that we cost too much or are they saying that a cure is needed? I too have had fairly good help from the health service thus far, while there is no cure; we do need help.
Wendy
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I can only speak from my own experience. I have been lucky enough to get amazing help with so many things all because I have a super MS nurse. She has been able to put me on a phsyc CBT course for anxiety and depression, a memory course and now a course of mindfulness CBT.
She checks on me every six months, I see her every month as well at our local branch drop in. If she decides I need to see the neuro she makes the appointment and it is usually within a month, Plus I only have to make a phone call if I need urgent advice.
She has been able to help with Phsio, Social services and Wheel chair services.
I have a stair lift put in on a council grant, adaptions to my house, furniture, toilets and bath not to mention many and varied sticks and crutches.
My wife is also looked after as a career, she is phoned by a local carers charity and offered a break by way of Coffey morning get togethers.
All this because I am lucky enough to have a brilliant MS specialist nurse.
I know this is not everybody’s experience by a long way, lets just hope that other areas catch up soon.
WOW!
That’s the way it should be for everyone!
Karen x
Just my take on it, Wendy, but I don’t think they’re trying to say either of those things.
Obviously, no organisation representing the interests of people with neurological disorders would argue a cure isn’t needed, but I think it’s probably accepted that isn’t going to be just around the corner for many/any of these diseases.
Instead, I think it’s just a call for better management and coordination of care, so people don’t end up having a crisis and going to hospital, before anything is done.
Tina
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That’s good then Tina
Wendy
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