21 July 2008
In an interview on GMTV this morning, Work and Pensions Secretary James Purnell said that it will be easier to identify people with M.E. and chronic fatigue under the new welfare system because the testing is based on the advice of people with M.E. and assessment itself will be undertaken by an independent doctor.
He was speaking ahead of publication of the Welfare Green paper, officially due to be presented to the Commons at 3.30pm today but leaked to the media on Friday.
His comments were made following an interview earlier on in the programme with Jemma Packett, from Brighton, who talked about the impact which the illness has upon her life. Jemma was put forward for GMTV by Action for M.E.
Presenter Ben Shepherd said to Mr Purnell:
"Talking about Incapacity Benefit (IB), some people just can't work. We heard earlier from a sufferer of M.E. which is a very difficult disease to diagnose. It's one that exists nonetheless.
"Under your new rules it would be difficult for her to prove that she suffers. As she was saying to us, some days she feels fine, five out of six days she can't get out of bed.
"How are you going to be judging these people and how are you going to be able to decide whether they actually worthy of the benefit or not.
Mr Purnell: "Well actually under our new system it will be easier to identify people with M.E. One of the things the system, the new test, is specifically designed to do is to identify people who have got chronic fatigue and illnesses like that."
Ben Shepherd: "Who's going to be doing this testing?"
Mr Purnell: "It's based on the advice of people with those illnesses and people who are experts in that area but then it will be done by someone who's a doctor, an independent doctor, not your own doctor, but an independent doctor.
"Anyway the key thing is that we want to get more support to the people that need more help - but we're going to expect more from people, so there'll be more support but more responsibility."
Ben Shepherd: "So you will, say, have M.E. sufferers advising on whether someone has M.E. or people suffering from other disabilities that you know, advising on whether these things exist?"
Mr Purnell: "Exactly and the whole point of this is when we talk to people on IB the vast majority say they want to work, so that's exactly what we're going to do.
"We're going to give people help, to get back into health, to improve their health, to manage their condition and then help to look for work after that as well. And all that we'll expect people to do is to go through those interviews with advisors and take up the help that's there.
"We're not going to force people into work who are disabled, we're going to give them the help to get back into work because that's what they say they want to do."
Jemma has given further interviews this morning.
Action for M.E. will issue a formal response to Mr Purnell's comments and to the Green Paper as soon as possible.
Earlier this year a survey by Action for M.E. showed that many people who are severely affected by Myalgic Encephalomyelitis/ Encephalopathy (M.E.), have to struggle through the appeals system before they are awarded benefits.
2763 people took part in the survey, according to the report and website. Of the 1015 people receiving Disability Living Allowance (DLA), 37% (376) had to go to appeal but 72% (274) won their appeal, suggesting that they should have been awarded the benefit initially.
15% (169) of the 1133 people receiving Incapacity Benefit (IB) had gone to appeal/tribunal in the last three years and 81% had succeeded at that stage.
Sir Peter Spencer, Chief Executive of Action for M.E., said that these people should not have been turned down in the first place.
"One in three of our survey respondents was either housebound or bedbound yet many face the bleak prospect of spending their lives on benefits, 'proving' to the authorities how ill they are.
"This creates additional stress which adds to the problems which people already face. It also demonstrates that government departments still fail to understand the clinical realities of M.E.
"More research is needed, both to improve understanding of the condition among decision makers and to help people with M.E. back to better health and into work."
It is estimated that 250,000 people in the UK have M.E. The survey findings describe the severity of the illness.
The most common daily symptoms experienced by respondents were poor concentration or memory (84%), overwhelming exhaustion (83%), muscle pain (71%), abnormal sleep (70%), fluctuating body temperature (63%), flu-like malaise (54%), headache (53%), dizziness (46%), constipation or diarrhoea (42%), burning/shooting pain, fibromyalgia (36%), nausea (32%).
Nearly 29% were so severely affected that they were generally housebound and a further 4% were bedbound. Most (63%) described their current condition as fluctuating, in relapse or deteriorating.
At their worst, 36% had been bedbound and a further 52% had been housebound, typically unable to walk for 15 minutes, prepare meals, do light housework or drive a car. 41% had been unable to shower, bathe or wash themselves and 15% had been unable to eat unaided.
While just over 12% had been this bad for less than three months, 18% had been at their worst for up to two years, 18% for 2-4 years and nearly 6.5% for over 10 years.
Transcript (c) GMTV Limited 2008.