Just adding here as an aside this fabulous speech in parliament from Labour MP Tony Wright (& co founder of the ME APPG 1998j regarding the 2002 chief medical officers report. It seems so much better - more focused, urgent, informed - than the much of the representation we get today and yes this was a freaking 23 years ago HOUSE OF COMMONS HANSARD DEBATES FOR 6 FEB 2002 (PT 4)
"Mr. Wright : I have no hesitation in applauding the work done by charities, especially the local groups in Norfolk and Suffolk. It is a matter of postcode prescriptions; whether one gets the treatment depends on where one lives. Dr. Mitchell is a pioneer on the issue in the Yarmouth and Waveney area.
On health services, the report identifies grave deficits in primary, secondary and tertiary care, which urgently need to be plugged. We need to take action to ensure that the changes happen as soon as possible, so those who are most severely affected do not continue to receive the worst deal from the NHS. What assurances will the Minister give on the matter? Does she intend to implement specific funding for such services? If it is to be left entirely for primary care, we will be making a rod for our own backs and condemning patients to years of frustration.
What are the Government's intentions on research? For many sufferers, that is the area in which they are desperate for leadership. The York review, which was incorporated into the chief medical officer's report, highlighted the chronic lack of serious research. Indeed, only 43 studies worldwide met the York criteria. The report stated categorically that there should be a programme of research on almost all aspects of the illness.
The report is being forwarded to those responsible for developing the national service framework for chronic disease. That is welcome, but the outcome may be achieved only over a 10-year period starting in 2005. Given that the report indicates that the deficits identified, particularly in relation to the severely affected, need addressing urgently, does the Minr agree that we cannot afford to wait more than a decade for a clear national strategy to be put in place?
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I am pleased that the matter was referred to the Medical Research Council with a request that it should convene an independent scientific advisory group and produce a broad strategy by the end of February. To date, the severely affected have been excluded from serious research and that needs correcting. It is essential that all aspects of the illness are covered. It will go down very badly indeed if research that may help those who are more severely affected is ignored. More work is needed in immunology, virology and endocrinology, among other areas.
At a conservative estimate, ME costs the country £4 billion a year in lost earnings and benefit payments. Does the Minister support the concept of ring-fenced money for research and, if so, what amount does she consider appropriate?
In essence, the chief medical officer said that from 11 January people with ME are entitled to the same support as those with other long-term, chronic illnesses, which is what sufferers and patient groups have been saying for years. They do not want special treatment, just parity with those who have other serious illnesses.
I welcome the recommendation that there should be public awareness campaigns to highlight the seriousness of the illness and I hope the Minister will tell us whether she intends to implement that recommendation. The report also recommends that the education and training of doctors, nurses and other healthcare professionals should include CFS/ME and that there should be specific postgraduate education and training in the subject. What assurances can the Minister give in that respect? For example, can she say when that will happen? Finally, can the Minister say how the recommendations on children with ME will be implemented? The impact of such an illness on a young child and their family can be devastating.
As hon. Members know, ME has suffered a curious history, and those who have it have had to face a peculiar double burden over the years. They must cope with an illness that to a great extent destroys their lives and suffer the prejudice and ignorance that has followed the illness around. It is hard for any of us to imagine what it must be like to endure the effects of a serious condition and a constant barrage of scepticism, cynicism and disbelief from those who should have helped them. Since I co-founded the all-party group on CFS/ME in 1998, I have heard from many sufferers whom GPs, health professionals and others have disbelieved. Although those sufferers were lucky enough to receive a positive diagnosis, they had to wait for years before they got to see an ME specialist.
Many more sufferers have experienced protracted battles with their benefits agencies, as they tried to receive the benefits to which they are clearly entitled. Further problems have been experienced at the hands of private health insurance companies, social service agencies and unsympathetic employers. The response to the report has been overwhelmingly positive. People are genuinely relieved that at last the Government are taking their illness seriously and that the problems that they face may finally begin to be addressed. Thousands of people saw a bleak future stretching before them, in which their quality of life became gradually worse. Those people can now have a sense of hope and begin to believe that one day they will be better. It is a huge
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breakthrough to be able to say at last that we have official recognition that ME exists and is a serious condition.
I commend the Government for their work in getting this far. They have seriously tried to grapple with the issue and, as a result, have made important progress. However, this must be viewed as the start of the process, not its conclusion, and we must act with an urgency that has been absent so far. People with ME want that, and after years of neglect, that is the least that they deserve."
