ME/CFS AUSTRALIA (SA) INC
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South Australia 5007
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South Australia 5007
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ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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Patients' fears at changes to Leeds CFS clinic
Monday 30 April 2012
Patients have criticised a planned shake-up of care for people with chronic fatigue conditions.
The proposals mean patients with debilitating conditions like chronic fatigue syndrome (CFS) and ME will no longer have direct access to an immunologist – a medical expert who carries out tests for a range of illnesses.
Leeds and York Partnership NHS Foundation Trust, which runs the service, says the immunologist had traditionally been in place as a ‘safeguard’ in case patients were not suffering from CFS or ME but another undiagnosed condition, like multiple sclerosis.
But as more is now known about chronic fatigue conditions, the trust claims there has not been a case of misdiagnosis in years and employing an immunologist directly is no longer necessary.
In addition, the revamp of care means a senior occupational therapist will be replaced with a less costly member of staff. Two junior posts will be upgraded.
However, patients say they fear these changes are the start of a major overhaul of care.
Mary-Jane Willows, the chief executive of the Association of Young People with ME, said: “I believe this is just a starting point for wholesale changes. It seems the trust is looking to provide a psychiatry-led service rather than a multi-disciplinary one.
“All patients referred to this specialist unit should be able to be referred to a medic.
“Figures show that up to 40 per cent of people ‘with ME’ have been misdiagnosed. That puts them on the wrong care pathway. But what about the people with serious conditions, like cancer or multiple sclerosis that may be overlooked? Although the number may be low if missed, it could be life threatening.”
Dr David Protheroe, the lead clinician in charge of the unit, said patients would still be able to access immunology services, if they were felt necessary, via their GP.
He stressed that only three per cent of the 600 patients using the service each year currently engaged with the immunologist.
A spokesman for the trust added: “The Leeds and West Yorkshire CFS/ME Service remains committed to delivering good quality care for people with CFS/ME in the region, with high levels of satisfaction.
“Our ethos and approach remains unchanged, including clinical emphasis on medical factors.”
A month-long consultation will be held with patients before any changes are implemented. To attend a presentation or give your views, email firstname.lastname@example.org or call 0113 305 5982.
The above, with comments, originally appeared here.
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