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NEWS RELEASE 17th April 2007
2,000 PEOPLE WITH ME/CFS ON TEESSIDE ‘DESERTED’ BY THE NHS Five years after people suffering from ME were told by the Chief Medical Officer at the Department of Health that their disease “would no longer be ignored or not taken seriously” 2,000 Tees-siders with the illness are still waiting to receive 21st Century treatment. ME North East, which campaigns on behalf of ME across the North of England, this week accused the four primary care trusts (PCTs) which serve the Tees area of discrimination in this area of patient care.“For two years, well thought out proposals to introduce NHS specialist care for this devastating and debilitating illness have quite simply been dumped by the local PCTs”, said ME North East chief executive Jennifer Elliott. “While all the others PCTs across the North East and North Cumbria are now offering dedicated specialist services to people with ME, the PCTs on Teesside obviously think this group of severely ill patients are just not worth bothering about. That’s a disgrace, because without early and correct diagnosis and an understanding by the patients of how to look after themselves, many people’s health will get worse. Almost 500 of these patients are children, who can be robbed of their lives and schooling by ME”, ME North East, based in Chester le Street say the typical cost of running a community-based service for people with ME/Chronic Fatigue Syndrome is £120,000 a year. Similar services have now been going for two years across the North East and North of England. So far 500 people have received therapeutic care for their ME – which is recognised by the World Health Organisation as a chronic neurological condition. “The model of care is already supported by the Northern CFS/ME Clinical Network so– if there was the will to make a real difference to people’s lives – it would be fairly easy to roll out a new service over here”, said Mrs Elliott. “There are a small number of doctors and consultants with the expertise who support the need for extra services locally but they are unable to see many more ME patients themselves because they are already so busy. “The PCTs on Teeside tell us they have a small contract to send patients to Leeds – but it’s too far for many people to travel, particularly for those too ill to leave their own homes. “We’ve had two years of prevarication and delay over this. If people live on Teeside and they have ME, they’re losing out in the postcode lottery for NHS Care.” CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalopathy) affects over 12,000 people in the North East and North Cumbria. 2,000 of these are children. Classified as a neurological illness, there is no known cause for CFS/ME and no cure.
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