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Lindyloo
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14-01-2018, 08:57 PM
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multiple sclerosis

Does anyone have experience of MS on this forum? I've just been looking at the MS Society website and see it offers a quite confusing range of pages showing what care is available and appears to be entirely an information only charity. Does it actually DO anything other than direct MS sufferers to an NHS or social care service?

Any information on actual services available would be appreciated.

Thanks
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15-01-2018, 11:13 AM
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Re: multiple sclerosis

I have ms I can't say I've ever found many services I'm afraid. Even aids like crutches and wheelchair we have had to buy ourselves.

I get annual appointment with neurologist who tells me how I am, I always think I could have told them that.

I get six monthly appointment with my GP if I can get one booked, to make sure I'm coping and to get my repeat prescriptions.

I used to go to a group meeting of other sufferers but I haven't been to that for years it was just too depressing. I don't even know if it is still going on.

One thing they all say is stop working and I'm not doing that. So the help has never started for me, so I have no idea what they offer if you do stop working.
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15-01-2018, 04:53 PM
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Re: multiple sclerosis

Thanks Julie - sorry to hear you have MS. I'm told there are certain benefits or grants you can claim, but these are subject to medical reports............I'd like to know the medical state you need to be in to try and gauge if the benefit would be paid or not, AND to make sure the goalposts don't change in the future.
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15-01-2018, 05:05 PM
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Re: multiple sclerosis

I only know a couple of people get any benefit or money at all due to their condition and they are extremely affected by it can't, hardly leave the house. I'm not saying there isn't anything out there but I don't know of anything.
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16-01-2018, 12:21 AM
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Re: multiple sclerosis

The MS society focuses on emotional support (via local groups) and funds research. They don't provide care as far as I know. I know someone with the milder form of MS who works there when she's up to travelling to London. She's in her '60s now. There are quite a few with MS who volunteer there. I think they have a helpline. My friend who has the aggressive progressive form is on gene therapy but it's not helping. He developed it in his early 60s. I had another friend who died in his 30s of the same after being diagnosed as a teen. You have more support if you have the aggressive form but it's not that great. With the milder form they expect you to just get on with life it seems.
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16-01-2018, 08:50 AM
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Re: multiple sclerosis

Thanks AnnieS - I think I have to find out more details.
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17-01-2018, 03:21 PM
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Re: multiple sclerosis

Lindyloo,do you mean being awarded money via the Benefits system ?
It always pays to apply for anything you think you might be entitled to .

https://www.mssociety.org.uk/ms-supp...ility-benefits
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17-01-2018, 03:38 PM
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Re: multiple sclerosis

Originally Posted by Zuleika ->
Lindyloo,do you mean being awarded money via the Benefits system ?
It always pays to apply for anything you think you might be entitled to .

https://www.mssociety.org.uk/ms-supp...ility-benefits
You may be right, but I suspect it goes against you if your medical assessment concludes that you're not yet ill enough to qualify. Hence my comment regarding finding out where the goalposts lie. Better, I suspect, to wait until you're sure you'll qualify medically.
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17-01-2018, 05:00 PM
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Re: multiple sclerosis

Originally Posted by Lindyloo ->
You may be right, but I suspect it goes against you if your medical assessment concludes that you're not yet ill enough to qualify. Hence my comment regarding finding out where the goalposts lie. Better, I suspect, to wait until you're sure you'll qualify medically.
Not sure I’m understanding your “not ill enough to qualify” comment.
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17-01-2018, 05:21 PM
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Re: multiple sclerosis

Originally Posted by Zuleika ->
Not sure I’m understanding your “not ill enough to qualify” comment.
Someone assesses your physical disabilities and if you don't qualify, presumably it's because your physical disabilities are deemed to be sufficiently good........or not sufficiently bad to qualify for the benefit.
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