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Please help us - no support at all here.

Hi, my son who is a British national,worked in Australia for 2 years; he returned nearly 18 months ago. I know that bars him from normal benefits, but since he returned he has been diagnosed with MS and this is making it very difficult for him to get work as he is progressing very rapidly and can barely walk now. He has worked since he returned,and has never claimed any benefit but unless he can get a job working from home (not impossible) he has no income at all and I have to support him on what is not a huge salary, and I can see a time not so long off when I will have to give up my job to care for him. Also the NHS is not so far being very supportive; his consultant just said ‘there’s nothing that we can do’ and we both feel abandoned. Is there anything at all we can do to get at least some financial help? Thank you so much. I’m new to all this and I’m feeling so stressed and upset about it all.

I suggest making an appointment to see your cab people tomorrow. They will hopefully, have the information you need or be able to put you in touch with people who can help. It must be very worrying for you both. If all else fails, contact a local MP.

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I agree with Poppy, make an appointment at the CAB, ask to see the benefits advisor.

They once gave me some very valuable assistance.

Ben

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Thank you both; I can try and see the CAB who come to my local library on Wednesday mornings. I am just feeling overwhelmed at the moment as it’s the weekend and my son has been worse these past couple of days. I can’t help him much, but you’re right, I can try and get some practical help that way and I will. xxx

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I am confused surely if he is a British National he is entitled to use our benefits etc isnt he?

https://www.citizensadvice.org.uk/benefits/coming-from-abroad-and-claiming-benefits-the-habitual-residence-test/british-and-irish-citizens-claiming-benefits/

We rang the DWP a while back about claiming DLA and sent the form back; they rejected his claim. It’s also got to the point where it may be close to physically impossible for him to get to a benefits centre.I will see what the Speakeasy says tomorrow and get back to you. Thank you all again for replying.x

You might try and find a better neurologist as well. If you post on here what area of the country you are in and ask, people will private message you about good neurologists who are near.

Also, your GP should be able to refer you to the wheelchair supply part of the NHS and for other help if you need it - an occupational therapist, who will be able to suggest changes for your home to make your son’s life easier, a physiotherapist, other services possibly.

Finally, you or your son could ring the MS Society helpline and get advice from there.

I found your posts heartbreaking - your son should not be left in the position where he has been told he will not get DLA when he is struggling to get to the benefits office and is getting worse. Please post again and tell us if you manage to get some help.

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Thank you! It means a lot as we have felt quite alone in all this. My son is not in denial about needing a wheelchair at some point but he is fiercely independent and strong minded and will put it off as long as he can! We are in Cardiff and the neurologist is at the UHW. We can’t afford to go private in any circumstance of course. I certainly will continue to access this site as it just helps so much to make contact with others who have dealt with this horrible disease for longer and maybe better than we have so far…:slight_smile:

By the way, I suppose I have been put off by all the awful posts about DLA injustices, especially on the Guardian site.Hope is what keeps us going in the end…

My benefit claims were rejected until I got Papworth Trust involved. Ring them and ask them for help.

They are national although their offices are in Essex.

Flo

Papworths number…

0800 952 5000

They were brilliant when I got nowhere on my own and sorted everything out.

Sending you a PM.

What type of MS was your son diagnosed with?

Well the first consultant he saw who was at Guys, said it was relapsing/remitting, but he’s had the MRI and lumbar puncture here in Cardiff and they said it’s primary progressive…

Has your son applied for PIP (personal independance payment)? It’s not means tested and might be helpful to him.

Unfortunately, that’s probably why they have said that they “can’t do anything”. As I understand it, there is no medication currently available that can stop the progression (whereas with Relapsing Remitting MS there are drugs that can reduce the amount of relapses)

What they can do is prescribe drugs to help alleviate the symptoms.

Thank you! I will try if the Speakeasy can’t help.x

Sorry. Missed your mention of applying for DLA. What reasons did they give for turning him down?

As you probably know, DLA has been replaced by PIP now. The criteria for it are similar to but at the same time very different to those for DLA.

It is a bit of a minefield applying for these benefits and the trick is completing the forms in the right way with as much information as you can muster. Whatever you do, do not expect the DWP to contact doctors for you to get the information to support your claim.

I would NOT recommend that anybody tries to fill in these applications without some assistance. Even if you are very used to filling in forms and applying for things DWP forms are a real nightmare and hard to get right - I’m a qualified lawyer and if I had tried to fill one in without help I would have got it sooooooo wrong. CAB etc can be very good but they are very stretched and the same goes for lots of other organisations.

There is an organisation online called Benefits and Work who produce excellent guides to completing forms from the DWP. They do charge to become a member (about £18) but they are worth every penny.

Good luck to you both.

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I’m going to see what the advice centre says tomorrow. Thanks

They just said he didn’t qualify. I have heard enough awful stories about people getting rejected who should not be, not to be surprised now. I know the Speakeasies in Cardiff will help you fill the forms out and I’m going to use them. And good luck to you too x I will post any updates.

I would advise getting in touch with your local welfare rights office at the council my welfare rights officer represented me at

ESA tribunal and was instrumental in me receiving pip also made sure we get all we are entitled to hope you get sorted g

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hi

your post made me sad.

you have had good advice about cab and welfare rights and you’ll feel better once you have seen them.

going private just means paying for a consultation with a private neuro, after this he/she will pass you on to an nhs neuro.

the consultation should be £200 maximum.

also i would want to have it made clear what kind of ms he has.

he has been told rrms but then ppms.

contact the ms society because there are new treatments coming available and some for ppms.

try to enjoy your son being home, when he feels up to it you may be able to hear all about his adventures.

(((((hugs to you both)))))

carole xx

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