DLA and M.E/CFS

Biffa

Not sure if anyone can help with this or not. Hubby currently receives Incapacity Benefit and DLA - lower rate mobility and middle rate care. He was awarded DLA after 9 months of appealing.

His claim is up for renewal in June 2008, so in February 2008 we sent off his new claim form. The decision has now come back and they've decided to keep him on the same rates as he was on before, this time for 3 years instead of 2.

The thing is, his condition has deteriorated quite a lot since his last claim in 2006/07. He can barely walk, and when he does he is in considerable 'pain and discomfort' - bl**dy agony, actually. He uses a walking stick and has a blue badge, and also has a mobility scooter when we go out and there's a lot of walking to do. It's a pain in the neck to be honest as it's so heavy I have to get my 9 year old to help me get it in and out of the boot of the car. He has to book the mobility scooter at Tesco's in advance if he goes shopping while I'm at work.

So, I have a couple of questions really. Has anyone appealed the lower rate mobility allowance and had the decision upgraded to higher rate? Is anyone a member of ACTION ME and can they help with DLA appeals? We had the Royal British Legion help us last time we appealed, but I think we may need the help of someone who understands ME/CFS a bit better.

Also, if anyone has any miracle cures for this awful illness, we'd be more than happy to consider them!

TangledMemories_2

Hi,

My partner is 29 and was diagnosed with psoriatic arthritis in June 2007. He was later diagnosed with psoriatic spondylitis in January this year.

We applied for DLA last year and were refused. However, we reapplied this year and have been awarded higher mobility and medium care.
My OH walks with the aid of walking sticks, has a blue badge and needs a chaperone when out in public to ensure he doesn't fall...

One thing I did do differently when I applied for him this time was I sent copies of the hospital letters confirming his illnesses and the fact he;s on weekly injections...also copies of the signed consent forms from when he was admitted and started on cortisone injections straight into his joints - Yes, this was unpleasant to watch.

I don't really know what to suggest, other than to appeal again and see if you can get any written reports to support what you're saying?

glossgal

Low rate mobility is quite unusual as an award for purely physical disabilites, it's really only appropriate for behavioural issues, conditions with unpredictable and potentially dangerous symptoms eg epilepsy or visual/hearing impairments.

However you need to tread carefully in how you approach any appeal-you'll have a month from the date on your decision letter to act initially but I suggest you contact CAB or local welfare rights a.s.a.p. They will be able to discuss husbands needs and whether High Rate Mobility is the correct award for his circumstances. Please bear in mind though that the award will be looked at again if you pursue the higher rate and is potentially prone to change either way! (with a history of having to appeal I would be particularly careful in this respect)

emmsa76

If your not already a member, I would recommend joining Action for M.E. As a member you'll be able to get their information sheets (very useful) which advise you virtually step by step what needs to be put on the various parts of the forms. You'll also have access to their confidential helpline that can give you information on all aspects of the benefits system including what benefits are available; how to apply for them and what to do if you want to appeal against a decision.

As already mentioned the Citizens Advice are also very helpful, they have helped me fill in renewal forms in the past for DLA (I too have M.E.)

All the best.

mardatha

Biffa I too would love a miracle cure for this bl**dy awful illness. I got DLA (lower rate both) after an appeal, that was for 3 yrs but runs out in sept and I heard that they have tightened things up so much that ME sufferers never get it now, so am not sure whether to go ahead and renew the claim. Emma I havent heard of action for ME but I suppose it costs money to join ..

emmsa76

Hi mardatha, yes it costs £15 a year. But they do offer a lot of help and support, I personally think it's worth the money.

emmiemac

Biffa wrote: »

Also, if anyone has any miracle cures for this awful illness, we'd be more than happy to consider them!

I've had M.E. for over 5 years, however I'm massively better due to trying an anti-candida diet (no sugar,yeast, milk fermented products etc) The difference in me since going on it has been amazing. I'm sure it won't help everyone but it is definately worth a go. There are loads of books on it and lots on the internet too.

Good luck

TOBRUK

Hi Biffa and all, I have had ME for over 11 years (diagnosed by ME specialist in 1997) and it is a mad horrible illness, affecting the mind (concentration, brain ffog) as well as the body.

I did not apply for DLA in the first few years, although I was advised to - I suppose I was in denial and thought I would recover.

I have been successful in receiving DLA although the first time I applied I went to tribunal before I could receive any and then it was lower rate, even though the ME specialist had written a letter to produce to the panel! I reapplied after two years and had another fight to get it, another tribunal, but I was then awarded Higher mobility rate and lower care rate .

The third time I re-applied was easier and I put this down to my GP's - I named my GP as someone who knew my condition best (as well as filling in the box asking for GP's contact details) and I received a mobility higher rate and now a middle care rate.

I did join ACTION FOR ME once I think it was 1998 but I could not justify the membership cost after that year as money was really tight.

I have tried many things to alleviate the pain and read a couple of the books which were recommended by the ME specialist I saw, although reading is often impossible as I often can't remember what I've read after a couple of pages. However my GP has been wonderful and has tried all kinds of medication to help - as the pain (the whole of my body) apart from the weakness and exhaustion is crippling.

I am lucky if I leave the house once a week for an hour, the past few months I have spent mostly in my pyjamas, and being dressed - my body hurts with the pressure of clothes against my body!

I do wish you well, and do re-apply (don't give up) however difficult and exhausting it is.

mardatha

I'm ok in the house & garden but very rarely go out anywhere. I have never been referred to anybody ande my GP just keeps saying there is no cure or treatment and I just have to live round it. Which I'm doing.

TOBRUK

Hi madartha, I know it is difficult and there are days when you think can it get any worse! I thought I would have recovered by now, but that has not happened - when I had to leave work (I was working at the BBC, enjoyed my work and had very good career prospects) I thought that if I did everything possible and take care of myself I would be able to return to work within 1-2 years and that was 8 years ago! I live alone which can be worrying (I had left home, family and friends 100 miles away to go to work at BBC, and bought a house where I now live) when I am really unstable, taking my mobile phone with me everywhere - even to the bathroom, just incase.

I have deteriorated during the past 2 years and have to get around using a crutch because of increasing falls.I have had to accept that I will no longer have a career, and I'll be lucky (according to my GP) if I will be able to do any work, and that the best chance I have would be to work from home.

There are ME/CFS specialists, I was an outpatient with one in Cardiff, but I also saw one in Manchester once. There isn't much they can do, I suppose mostly just confirm the diagnosis and give advice.

mardatha

I think its a waste of time trying to get to a specialist anyway because if there was treatment or a cure then we'd all know about it eh I just live around it but this big load of DLA and PCA forms has got to me a bit.
However plod onwards and upwards and dont let the s*ds get you down .