Myalgic Encephalomyelitis

– in the House of Commons at 10:09 pm on 11th May 2004.

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Motion made, and Question proposed, That this House do now adjourn.—[Mr. Heppell.]

Photo of Anthony D Wright Anthony D Wright Labour, Great Yarmouth 10:10 pm, 11th May 2004

I am pleased to have secured this debate tonight, especially as this is the eve of ME awareness day, and many right hon. and hon. Members will be lobbied on the issue tomorrow. Two of my constituents, Tanya and Christine Harrison, will be here to lobby me—it was just six years ago that they persuaded me to start the all-party group on ME. I should like to praise all the groups who have supported the all-party group and me in the interim, including BRAME—Blue Ribbon Awareness for ME—Action for ME, the Association of Young People with ME, the ME Association, the 25 per cent. ME Group and many smaller but equally significant groups.

ME continues to be a controversial chronic illness, as I have discovered first-hand in the various correspondence that I have received. It is estimated that 25,000 children and 100,000 to 300,000 adults suffer from ME in Britain. The condition has cost the taxpayer about £4 billion to date, with only small inroads being made into treatment and understanding. The report to the chief medical officer by the working group on chronic fatigue syndrome and ME was a landmark in changing Government perceptions of ME. However, at an operational level, the report's findings must have a greater impact on current practices, as access to benefits continues to present problems for sufferers. Lack of knowledge and understanding of the condition among professionals, widespread disbelief and institutional prejudice, lack of effective evaluation and plain stigmatisation mean that there is little or no consideration of the desperate problems experienced by sufferers. The disability living allowance and the new permitted work rules need to be revisited if we are fundamentally to change institutional prejudice towards this very real illness. I find it appalling that I still have to make this case.

Carli Barry was an ME sufferer who tragically took her own life on 8 February 2001, aged 27. Her mother recently spoke about the system that took away her daughter's independence and dignity:

"Applying for benefits for an invisible illness with no diagnostic test is hell. The result largely depends on the beliefs of the doctor sent to examine you—a game of Russian roulette."

Carli's first application for DLA was turned down. Her second application resulted in payment of mobility allowance at high rate and carer allowance at lower rate. Her third application was completely rejected. It took 18 months for her case to reach the tribunal, when she was awarded a care element of DLA for three years. During that time her condition deteriorated as a result of stress.

Another sufferer from ME, Gary Frankum, was a professional speedway rider before he had the condition. Talking about DLA assessment, he told me:

"The first Examining Medical Practitioner that came out to me was no sooner through the door than he confessed to me that he knew very little about ME; at least he acknowledged the condition. The second EMP that came out refused to even do this, saying that there was no such thing as ME, only CFS. When I demanded a copy of the assessments, after my DLA was turned down, I was amazed by the lies written about me."

The Centre for Longitudinal Studies found that people with ME received a significantly smaller proportion of DLA awards for their main disabling condition compared with other groups. By contrast, a significantly higher proportion of ME claimants win their case on appeal. Action for ME conducted a survey entitled "Severely Neglected: ME in the UK", in which 44 per cent. of the respondents who had applied for DLA said they had had to go to appeal. Of those who applied, only 25 per cent. were rejected. That illustrates how DLA is being denied to thousands of ME sufferers.

The first hurdle most apparent to ME sufferers is the fluctuating and difficult initial diagnosis of the illness. Having a good GP who is supportive of a patient's ME experience can make all the difference to a successful DLA claim. There are many such GPs. However, it is far too often the case that a disbelieving or untrained local GP destroys an ME patient's chance of receiving correct treatment and advice on undertaking to receive DLA. To resolve the problem, it is essential that local GPs are equipped to deal with ME.

The chief medical officer's working group report on CFS/ME highlighted the need for more doctors, nurses and health care professionals who know and understand CFS/ME. On 12 May 2003 the Health Minister announced a central revenue budget of £8.5 million to develop services specially designed for people with ME. The investment is intended to pump-prime the development of clinical services where none currently exists, but that should be seen only as a beginning, not as an end.

The second hurdle that exists for ME sufferers claiming DLA is an inflexible, poorly explained and burdensome DLA form. The form consists predominantly of questions requiring a yes or no answer, which do not effectively represent the problems associated with ME as a fluctuating chronic illness. Consequently, ME sufferers often inadvertently misrepresent their condition. Furthermore, the DLA application forms are burdensome and often leave ME sufferers exhausted—owing, ironically, to the very forms that are designed to ensure their future support. That acts as a negative incentive to complete the forms, with the risk that ME sufferers will not claim when they should do so.

The third hurdle is the poor training and education of DLA decision makers, causing bias against ME sufferers. The Association of Young People with ME states:

"If decision makers and DWP assessing doctors were given more balanced training and less biased information about ME, patients would be treated more sympathetically by the benefits system."

However, the Department for Work and Pensions initial training for new entrant decision makers states of ME sufferers that they are able to move

"from bed rest one day to being able to venture far afield the next."

That shows an outrageous misunderstanding of ME that must be addressed.

The fourth hurdle is DLA physical assessment examinations. The current physical assessment examination is inappropriate for evaluating the abilities of an ME sufferer. First, it does not give an adequate picture of the illness, whose symptoms worsen with a delayed impact following activity. Secondly, there is often conflict between the claim form and an examining medical practitioner's report, as the claimant may have made an effort to be at his or her best on the day of assessment. Thirdly, the EMP's report may include misleading information, such as the appearance and state of the home, without questions such as, "Who did the cleaning?" and, "How long did it take?" having been asked.

Fourthly, claimants may be pressurised into signing the assessment form while feeling unwell or too intimidated to challenge a doctor on that day. Fifthly, visits are often made at only 24 hours' notice and are hard for ME sufferers to turn down, owing to the variability of their condition. In short, how is it possible for an EMP, in an assessment that lasts less than an hour in most cases, accurately to record the state of a patient with such variable symptoms as ME, and without having strong prior knowledge of that patient?

The problem is compounded by the fifth hurdle, which is the bad practice of some EMPs during physical assessment. Like many GPs, there are still many EMPs who do not believe that ME exists or lack understanding of it, and who openly suggest to patients that they have psychological problems. That often undermines initial claims, as the report will take precedence over other medical reports, despite some being in conflict with the claimant's local GP's report. One example of misunderstanding shown by EMPs in assessments relates to muscle wastage. Also, there is no provision for measuring the delayed impact that activity has on a person with ME.

Finally, the sixth hurdle that can be identified is a cumbersome and overburdening review and renewals process. If a claimant is successful in negotiating all the other hurdles and eventually receives DLA and obtains care or mobility assistance, their condition may finally stabilise. However, stabilisation will inevitably mean that ME claimants will fall short of the necessary criteria and DLA will be taken away, causing a relapse and costing the state more money when a new DLA application is made. Sufferers also run the risk of losing all benefits should they wish to contest an award, which is unfair given the nature of ME and the poor ability of the DWP to assess it.

I should like the Minister to consider these recommendations in addressing those hurdles. EMPs and GPs should be given information and training on ME so that they ask revealing and pertinent questions, taking account of the delayed impact of activity and symptom fluctuation. DLA forms, which currently give little scope for explaining the effect of ME symptoms over a period of time, must change to address the problems already outlined for ME sufferers.

Accurate and clear guidance should be provided to DLA advice and assessment staff in the DWP. It should include guidance on how to manage conflicting medical opinions between EMP and GP reports. The process of medical assessment should be geared to the needs of sufferers, and the refusal of a medical assessment should not mean that a claim for DLA is automatically turned down. EMPs should be given better guidance and monitoring for physical assessment exams to ensure correct evaluation—one approach might involve keeping medicals to a set time frame, with breaks.

The review process must be better clarified for claimants, preventing unnecessary appeals and saving costs. In my experience, few sufferers realise that a review can be triggered by just a telephone call. The tribunal process must be made more flexible, as many claimants with ME do not pursue an appeal because they feel too unwell at the time. DLA claimants should be made aware that information that they give about a future claim might affect their current claim. As an alternative, the benefit could be held in perpetuity to give people the opportunity to ask for a review without losing benefits. Importantly, a middle rate mobility component should be introduced to aid gradual recovery. Currently, lower rate mobility is available only if the claimant has a mental illness. Those falling short of the higher rate can be left without anything, pushing them into severe relapse, which further costs the taxpayer.

Finally, I would like to turn more briefly to changes from the old to the new permitted work rules, which make it harder than ever for ME sufferers to remain included in work, with a dignified way of life. The chief medical officer's working group report on CFS/ME states:

"Return to work, even after prolonged absence, can be hard to negotiate at levels realistic for these patients, and the potential for a 'benefits trap' is only partially ameliorated by current rules on therapeutic work and therapeutic earnings."

However, rather than providing a stepping stone into work as intended, the rules have pushed ME suffers into working fewer hours or giving work up all together in order to retain their benefits, creating the trap that the Minister has tried to avoid.

The £20 limit for weekly earnings at the lower permitted work rules level is unrealistic for ME sufferers. Non-manual work is usually paid at more than £6 per hour, and professionals can earn up to £10 to £25 per hour, which means that ME sufferers get pushed into the higher level six-month rule, even though they may work for only three hours a week. The old therapeutic work scheme allowed those who worked for up to 16 hours or more a week a salary of up to £67.50. Under the new higher level permitted work rules, that income can only continue for a 26-week fixed period before assessment, and the jobs broker can then only extend it for a maximum further period of 26 weeks before it is replaced by the £20 a week maximum sum or incapacity benefit is stopped.

I am not sure of the rationale behind that change, given that many other disabled people, who are unable to return fully to the workplace but require supervision within it, are still paid up to £67.50 for an indefinite period. What is the difference between someone who needs supervision and someone who does not when both are equally unable to return to work fully? If people decide to stop benefits and continue working, but work for less than 16 hours per week, they could be in a grey area with regard to tax credits, as single people must work for 30 hours a week and people with children or disabled people must work for 16 hours a week. Recovery from ME is gradual, and it often takes years. For those who, owing to their condition, are unable fully to return to work, the new permitted work scheme seems unfair and inflexible, which is something that I hope the Minister will address.

I ask the Minister to respond to two recommendations on this matter. First, the £20 per week limit on the lower threshold of permitted work should be set at a more realistic level or special provision should be given to groups such as those suffering from ME, who are unable to follow a course back to full employment.

Secondly, extension of work should be made more accessible beyond the initial six months. For example, the 16-hour requirement should be brought down to a lower level, say 10 or 12 hours. Also, more than six months should be allowed for the gradual build-up of work hours in the case of chronic conditions such as ME.

The recommendations that I have made are feasible. Many of them are more to do with cultural shifts than with the expense of vast resources. It is certain, however, that something must be done to end this discrimination that this group have faced regarding benefits. This Government have done more for ME sufferers overall than any before, and they are making sure progress in tackling the condition, but the Minister must ensure that the DWP continues that work by instituting some of the changes that I have proposed, which are supported by many in the ME community.

Photo of Jane Kennedy Jane Kennedy Minister of State (Work), Department for Work and Pensions 10:25 pm, 11th May 2004

I congratulate my hon. Friend Mr. Wright on securing this important debate. I am grateful to him for presenting me with the opportunity to explain the basis of entitlement to disability living allowance, or DLA, and the role of the new permitted work rules that are replacing the therapeutic earnings rules. I pay tribute to him for the vigour with which he has pursued his case. As he said, he was a founder of the all-party group on myalgic encephalomyelitis and currently chairs it. The Under-Secretary of State for Work and Pensions, my hon. Friend Maria Eagle, has told me about the vigour with which he fights for the cause of ME sufferers, not only in his role as all-party group chair, but from the experience that he has drawn from constituents whom he has got to know during the time that he has represented them. They will be grateful to him for his efforts, as will all sufferers from ME.

When I discussed this debate with my hon. Friend the Member for Liverpool, Garston, I was impressed by the depth of her understanding of the illness and of the detail of her brief. In her unavoidable absence, I am afraid that I will be but a poor substitute.

The Government acknowledge some of the concerns expressed by my hon. Friend the Member for Great Yarmouth, and I hope that I will be able to deal with them in the short time that we inevitably have in an Adjournment debate. If I miss any points, I undertake to write to him. We do not share some of his other concerns, but when my hon. Friend the Member for Liverpool, Garston visits his group shortly, she will take that opportunity to explore them further.

Myalgic encephalomyelitis, or ME, which is otherwise known as chronic fatigue syndrome, describes a spectrum of conditions where the prominent symptoms are fatigue, both physical and psychological, which may affect both physical and psychological functioning. My hon. Friend said that the illness still carries with it a degree of dispute as to its nature. Several names, including post-viral fatigue syndrome, have been used to describe the condition. More recently, the term chronic fatigue syndrome has been more universally adopted. That gives rise to some relief among those of us who are not medical experts.

How does ME relate to entitlement to disability living allowance? I should like to dispel straight away the idea that ME is not recognised by the Department for Work and Pensions as a potentially serious condition that may bring entitlement to DLA. Approximately 14,200 people get DLA because their primary disabling condition is ME, and about 2,200 successful applications are made every year.

Disability living allowance is a tax-free, non-contributory and non-means-tested benefit that is paid as a contribution towards the extra costs that are faced by severely disabled people as a result of their disabilities. However, entitlement to the allowance is not linked to specific disabling conditions or to particular diagnoses. That means that people who have ME qualify for benefit on exactly the same basis as other disabled people—that is, they must meet the entitlement conditions. The Government believe that criteria based on the effect that disability has on personal care needs and the ability to walk are the right approach for determining entitlement to DLA. I am afraid that we have no plans to passport people to entitlement to the benefit on the basis of specific disabling conditions.

Photo of Russell Brown Russell Brown Labour, Dumfries

Will my right hon. Friend give way?

Photo of Jane Kennedy Jane Kennedy Minister of State (Work), Department for Work and Pensions

I hesitate to give way as this is the debate of my hon. Friend the Member for Great Yarmouth, but I shall make an exception for my hon. Friend.

Photo of Russell Brown Russell Brown Labour, Dumfries

I thank the Minister for giving way. I also congratulate my hon. Friend Mr. Wright on securing this debate. The Minister is talking specifically about the assessment of an individual's condition, and my hon. Friend has mentioned visits for medicals, which sometimes take an hour. From my experience of listening to my constituents, I have learned that those medicals can sometimes take only 15 or 20 minutes. That is not an adequate amount of time in which to go through a proper medical and arrive at a true determination.

Photo of Jane Kennedy Jane Kennedy Minister of State (Work), Department for Work and Pensions

My hon. Friend makes a serious point, and I shall come in a moment to the training and advice that is given to those who make the medical assessments. I hope that if I get the opportunity to explain the details, I shall be able to allay some of his fears.

It is important when assessing a person's ability to ascertain the effect of the condition on each individual's need for attention, the extent of those needs, for how long they have been present, and for how long they are likely to remain. It is therefore important that time is taken to make that assessment properly and for it to be made for each individual applicant in exactly the same fair and thorough way. With regard to the mobility components, it is important to assess the person's ability to walk and whether they need someone with them on unfamiliar routes.

ME is, by its very nature, a variable condition, and it is not possible to guarantee that someone will qualify for DLA, because the effects of ME affect people in different ways, to different degrees and with considerable variations over time. This approach is no different in regard to other variable conditions, such as mental illness, asthma, rheumatoid arthritis, multiple sclerosis and others—that is not an exhaustive list. I know that my hon. Friends would make a similar case for other illnesses in which similar conditions were experienced.

Photo of Mr Andy King Mr Andy King Labour, Rugby and Kenilworth

My right hon. Friend draws our attention to other conditions, but those other conditions are universally accepted. The problem that we are discussing tonight is highlighted by the fact that many of the GPs—a minority, I hope—who are responsible for carrying out these assessments do not accept that the condition exists. That is a major stumbling block for many of our constituents.

Photo of Jane Kennedy Jane Kennedy Minister of State (Work), Department for Work and Pensions

My hon. Friend's point is well made.

It will probably help if I turn now to the training and advice that is given to those whom we charge with the job of making the medical assessment of those applying for disability living allowance. All examining medical practitioners—EMPs—already get specific training about ME or chronic fatigue syndrome. It was first issued in 2001, and updated in 2003. My hon. Friend the Member for Great Yarmouth asked us to look again at the detail of that training.

The training stresses the need to consider the variability of symptoms and not to take a snapshot view, which was the concern expressed by my hon. Friend Mr. Brown. The training that EMPs receive instructs them not to include irrelevant information in their reports. Information should be included only if it has a material bearing on the assessment. Similarly, visits at short notice are not in keeping with the expected professional standards unless they have been agreed to by the customer. The doctors employed by medical services to carry out examinations for DLA purposes also have to meet specific recruitment criteria and are required to attend a prescribed training course prior to commencing work. We should not experience any scepticism on the part of those whom we are charging with the task of carrying out these assessments—the examining medical practitioners.

In addition to that training, the EMPs are issued with relevant guidance, and the Department's chief medical adviser must approve all doctors who carry out the examinations. The standard of their work is monitored and approval can be withdrawn if a doctor fails to meet the necessary standards. They are also required to undertake an annual programme of training to refine their skills and update their knowledge of disability medicine and other relevant topics.

People should complain if the expected standards are not met, and Department for Work and Pensions medical services will always respond to complaints about individual doctors. Department for Work and Pensions medical services do not get a greater incidence of complaints about chronic fatigue syndrome or ME than other conditions, and they should be viewed in the context of the overall number of complaints, which is 0.4 per cent. of all medical assessments made. I believe that that is a good record. However, that is not to say that we do not take complaints seriously.

Claim forms were mentioned. We are listening to the feedback from customers who use the forms. The claim forms for disability living allowance and attendance allowance are designed to enable disabled people to give a full account of the effects of their disability, rather than to cover any specific illness or disability. We do not have specific forms for different illnesses. However, we acknowledge the length of the claim forms and the fact that some of the questions may not always be relevant to each individual's needs or straightforward to answer. We accept that they have been a cause of concern for some disabled people. Consequently, we developed a new style of attendance allowance claim form in 2002, which, after successful evaluation, has been in use nationally since November 2003.

The new version reduced by half the size of the claim pack, and has a simpler style and fewer questions, making it much easier to complete. The form has been designed to enable people to tick the relevant statements from a prompt list provided on it and to tell us briefly, in their own words, the sort of help that they need during the day or night. Following the success of the new AA claim form, we are developing a new, shorter DLA claim form, which we hope to test shortly in the area served by the Glasgow disability benefit centre—unfortunately, not the area of my hon. Friend the Member for Great Yarmouth.

In the few minutes that I have left, I want to consider the permitted work rules that my hon. Friend mentioned at the end of his contribution. We are replacing "therapeutic work" with new permitted work rules. Benefits such as incapacity benefit, severe disablement allowance and income support, which are awarded on the basis of incapacity, are intended for people who are incapacitated by the effects of their condition. Benefit cannot therefore normally be paid to people who work because the basic entitlement condition is not satisfied. However, we recognise that allowing a limited amount of work can help to improve a person's condition, increase their chances of returning to the labour market and help them to achieve lasting paid employment.

Previous rules allowed benefit to continue if work was undertaken on the advice of the claimant's GP and it was confirmed that the work would help to improve, prevent or delay deterioration in the condition that entitled the person to benefit. That was often described as "therapeutic work." As my hon. Friend said, earnings could not exceed a prescribed limit and the work had to be done for less than 16 hours a week on average. However, the therapeutic work rules were of limited use when a person could not demonstrate that a specific job would be beneficial to their medical condition, for example, blindness, paraplegia—or, indeed, ME. They allowed a person to do some paid work on a limited basis only if it satisfied the therapeutic requirement and they applied to a relatively limited number of people on incapacity benefits.

Therefore, as part of our commitment to remove the barriers to work for those with a health condition or a disability, we introduced new, more flexible work rules from April 2002. They replaced the therapeutic rules, which my hon. Friend is almost wishing back because he is not satisfied with the replacement. These are what we call the permitted work rules.

The permitted work rules are still at a relatively early stage and are undergoing evaluation by independent researchers. I am sure that my hon. Friend the Under-Secretary will be happy to go into this in greater detail when she meets with my hon. Friend's all-party group very shortly.

Question put and agreed to.

Adjourned accordingly at twenty-one minutes to Eleven o'clock.