NHS bosses in Norfolk promise to shake up ME/CFS services

January 22, 2010

From the Eastern Daily Press, 22 January 2010 (Story by Rebecca Gough)

Patients with severe ME who have complained of feeling neglected by the NHS could see treatment improve as early as the summer according to health chiefs.

Many patients and carers have been frustrated by what they see as delays in improving the service for people with ME and the related chronic fatigue syndrome (CFS) after the region's only specialist consultant left almost four years ago.

In Norfolk and Suffolk the service is currently managed on behalf of all health bodies by NHS Yarmouth and Waveney and consists of referrals through a GP to nurse therapists and other doctors with a specialist interest, but critics believe there is a gap in provision.

However, at a meeting this week of patients, carers and representatives from the three NHS trusts, held in Thetford, it was revealed a new consultant is being sought.

NHS Norfolk's interim director of innovation, Ian Ayres, said the current service for patients with severe symptoms of ME and CFS was not sufficient and there was a need to “start again”.

“I have two grave concerns,” he said. “One, is we're missing the point in terms of the service, and the second is that the process we've gone through in the past couple of years hasn't left us where we want to be.”

He said three things needed to be addressed; a consultant needed to be appointed, GPS should direct patients to the appropriate services, and, as the service provider, NHS Yarmouth and Waveney needed to extend services to as many people as possible.

He added that the need for a consultant would not go out to tender and that someone would be appointed as soon as possible. What and how services are then provided would be addressed in the second quarter of the year.

“If we could get someone to come in today to do it for reasonable money I would do it today,” he said. “If I can do that and therefore have something up and running and get back to where we were, by this summer. Then the next step is how to move forward with a full needs assessment.”

An estimated 8,000 people in Norfolk and Suffolk have ME or CFS, a quarter of them severely with the worst effected in constant pain and unable get out of bed, but some patients claim that medical professions do not understand it.

Brian Hindle, a former ME patient and chairman of the ME Support Group in Beccles and the surrounding area, said: “We want action, not words.”

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