Hi everyone

I need some advice on behalf of my sister. She's 28 and has suffered from ME since she was 14. She hasn't ever been able to work but was told last year that she's not entitled to disability benefits any more and that she was capable of working. She's now living with my parents, who are both pensioners and having to support her with their pension.

I don't know what to advise her to do. The process for getting benefits in the first place was humiliating enough - travelling to another county, a journey that's impossible by public transport so she had to get my dad to drive her...what would they do if she didn't have someone in her family with a car? She was then interviewed by a doctor who could barely speak English who pronounced her fit to work. They just judge you on can you put your shoes on, make a cup of tea etc and don't understand the exhaustion that ME gives people. The people who make these decisions have no medical training. Do they honestly expect her to work maybe one or two days a week, exhaust herself, then spend the rest of the week recovering? If you're fit enough to work and can claim jobseekers allowance, no one forces you to make yourself ill. She'll never get any better unless she can have some money, self respect, less stress and stop sleeping in a single bed in a box room.  Apparently she can appeal against this decision by going in front of a committee of non-medical experts but she'll have to go back to the same place and it's a 3 hour journey by public transport, which would knock her out for a week.

Has anyone else had this experience? How did you get round it? Please give me some advice. My sister is so depressed and hysterical all the time and my mum, who turned 70 a few weeks ago, is having years taken off her life being my sister's full time carer and counsellor, plus very poor as her pension isn't enough to support another adult.

Thanks, Cat

Hi,

Disability allowance can be a tough one to be awarded.

I have RA and have gone through fatigue, agonising pain and imobility.   I had to be assessed by an independent doctor in my home.   Although I was really struggling to walk I was not awarded the mobility part but only the care part.   It was because my hands were sore (even though they were not such a problem as my feet and legs at that time) and I found it hard to take care of myself.

I was more concerned about taking proper care of our young son (now 7), but the benefits agency refuse to take dependents into account.   It doesn't matter that I couldn't prepare a meal for him, it was only ever me that was taken into account.

I would be very surprised if the benefits agency view a single bed in a box room as a problem, I take it your sister is not sharing her bed with a live in partner.

Can M.E. last forever?   What does her GP advise your sister to do?   I manage four hours of work a week and the rest unfortunately is left to my DJH which is tough on him.   We only claim benefits that all parents claim i.e. Child benefit and the lowest level of D.L.A. for me.   Things are very very tight but we have to make things work and adjust accordingly.   We do very little outside of the home and don't have any luxuries except my laptop which I use every day for household accounting and grocery shopping.   We accept the way things are and just battle on but keep looking ahead.

Takl to C.A.B.

Dozey.

Hi

I agree with Dozey, DLA is a very tough benefit to claim and many people are turned down. I have it and get the mobility part and the lowest care rate. I have problems with my feet and ankles that makes walking really tough and I also have Fibromyalgia which is similar to M.E in that it can cause exhaustion as well as severe pain,stiffness,sleeping and other problems which are too long and boring to go into now lol.

I have always found the best people to deal with are Welfare Rights. They are very knowledgeable and can help your sister fill in the forms, they will also help her prepare an appeal if it comes to it. And they do home visits for the housebound. Going by way of W.R makes your claim 30% more likely to succeed. Citizens Advice are very good for general help and advice but I don't think they are so good when it comes to claiming benefits. If your sister has a GP who is knowledgeable and sympathetic about her condition then that will help.

Unfortunately (as with Fibro)  not all medical authorities accept M.E as a legitimate condition because there is no one cause and often blood tests and other tests come back as negative. Fibro is now accepted as a medical condition but I know there is still some scepticism over M.E.

It sounds to me like your sister is a victim of tough new legislation brought in by the Govt to try and cut down on sick or disability benefits and I agree that those that can work should but inevitably those who are genuine are also going to fall victim as well. Please consider getting your sister to see her local W.R office as soon as possible. Also Action For M.E has a very useful section about claiming benefits at www.afme.org.uk. Hth.

I thought i'd better just say (in case you think i'm ignoring your post), I totally agree with Bumfy. I went with Welfare Rights to do my DLA form and they were amazing. PLEASE get them to help your sister. You don't have to be diagnosed with something to get DLA, it just has to affect your day to day life (which it obviously does).

Welfare Rights can help you with ANY benefits to which someone's are entitled, and if you don't know which, they can tell you (although this will depend on a visit and them actually seeing and speaking to your sis). No problem though as they can see for themselves when they come out to help you fill in the DLA forms. WR actually made notes and even took the form away and filled it in and posted it for me.

I got high rate care and mobility first time.

Good luck (oh and WR are based at the local council)
xx

Hi,

DLA can be very hard to get but like the others have already said there is help available with form filling and advice.

Jillxx