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Please help us - no support at all here.

I saw my neuro privately last week again, for a good 30 minutes it cost me £110.00 worth every penny, and yes any treatment he is sending a letter to my NHS doctor to give me prescriptions.

He mentioned a new treatment from London for PPMS or late state onset of MS, but i cant for the life of me remember what he said, as he said so many names of different drugs. I am sure one of them i am getting prescribed is this one from London. He said they are having good results with it. When i do get the prescription i will post it back on here.

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You must reapply they always say that. You need to get help with the forms. You can ring your local adult social services term for advice and help, you might be able to get direct payments for him, which will help you pay for someone to help. There are a lot of things out there. If he is a british citizen then he should be entitled to all these things. xx

My brilliant neurologist records our conversation and plays bits back to me if I cant keep up, he also gets most of it typed and sent to me my GP and MS nurse.

worth a try, and if they wont record it you might have a phone in your pocket “accidentally” recording during your consultation.

Not for a threat but just so that you can digest it at your own pace

Mick

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We just reapplied for a form, which they said could take a couple of weeks to arrive. So we can’t do much until then. The problem seems to be linked with him working in Australia for 2 years until 18 months ago. I get the impression that would disqualify him from anything but Ill get some advice on that asap.

Hi, how did you get on?

I rang the CAB instead, the problem seems to be that he doesn’t qualify for PIP until either he’s been back from Australia for 2 years - which would be at the end of this October, or he can prove habitual residence, which should be easy but probably won’t be as he was working for the Australian company remotely before he went out and paying Australian tax not British…The CAB said to ring the DWP without giving our name, but doing that scares me as I don’t know what they might figure out during the call! I will either have to do that or see what the advice centre says when we get the IP forms.

Thanks everyone! As I said in reply to Crazy Chick above, it seems to be the habitual residence/working in Australia thing that’s the problem. He will qualify at the end of October this year but that’s too long to wait. I can only get advice from anyone in this area who may help, and I’m making progress there. Just have to wait until their opening days. I do appreciate all your help. I was feeling so awful when I made my original post as he was having a couple of really bad days. He’s better today. xxxxx

Thank you all - just an update; My son now has a basic ESA award and a PIP form. These will be dealt with. Also I paid for a visit to a good local chiropractor which seems to have helped at least a wee bit.We shall see how that works out. we don’t expect miracles, but if nothing else this man seems to be taking a holistic approach which the MS specialists in the NHS definitely do not; they have been rejecting any questions which aren’t directly down to MS. At least someone is listening and we are both a lot happier because something is happening! Thank you again for all your support. I may well be back! xx

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