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Mr. Desmond Swayne (New Forest, West) (Con): Further to that point of order, Mr. Deputy Speaker. Is it not profoundly shocking that those of us who either took the trouble to vote for free speech or, presumably, voted to settle the main Question now, discover that we are to be denied that opportunity and that we may as well have not troubled ourselves to be here at all?

Mr. Greg Knight (East Yorkshire) (Con): Further to that point of order, Mr. Deputy Speaker. Will you confirm that a Minister has moved a closure motion on open-ended business that is subject to the deferred Division procedure? The Government's only possible reason for doing that is so that the Minister could have an early night in bed. Is that not an insult to the House?

Mr. Deputy Speaker: I have the gist of the point of order raised by the hon. Members. As they must all know, I am bound by the Standing Orders of the House; they are as they are, so I must now put the Question on motion 4.
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Main Question put—

Mr. Deputy Speaker: I think the Ayes have it.

Hon. Members : No.

Division deferred till Wednesday 12 May, pursuant to Order [28 June 2001 and 6 November 2003].


Motion made, and Question put forthwith, pursuant to Standing Order No. 119(9) (European Standing Committees),

Nutrition and Health Claims Made on Foods

      That this House takes note of European Union Document No. 11646/03, a draft Regulation on nutrition and health claims made on foods; and supports the Government's view that the measure will promote informed consumer choice and facilitate intra-Community trade.—[Mr. Heppell.]

Question agreed to.


Postern Gate Surgery

10.9 pm

Mr. Michael Jabez Foster (Hastings and Rye) (Lab): The Bexhill and Rother primary care trust has decided to relocate the Postern Gate doctors' surgery in Rye to a centre 1 mile out of town and up a steep hill. I have the honour to present the petition of Geoff Lyus and about 1,000 other residents of the Rye area.

The petition declares:

To lie upon the Table.

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Myalgic Encephalomyelitis

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

10.10 pm

Mr. Anthony D. Wright (Great Yarmouth) (Lab): 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:

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:
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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:

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

That shows an outrageous misunderstanding of ME that must be addressed.
11 May 2004 : Column 329

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
11 May 2004 : Column 330
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:

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
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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.

10.25 pm

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