Patients’ fears at changes to Leeds CFS clinic | Yorkshire Evening Post | 28 April 2012

From the Yorkshire Evening Post, 28 April 2012

Patients have criticised a planned shake-up of care for people with chronic fatigue conditions.

Cash-strapped health bosses in Leeds plan to make around £46,000 worth of savings by changing the treatments offered at its specialist clinic at Seacroft Hospital.

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 communications.lypft@nhs.uk or call 0113 305 5982.

The Countess of Mar, who chairs the Forward ME Group of national ME/CHS charities and organisations, sent the following letter to the Chairman of the Leeds and York Partnership NHS Trust on 1 May 2012:

Mr Frank Griffiths
Chairman
Leeds and York Partnership NHS Foundation Trust

1 May 2012

Dear Mr Griffiths

I write to you in my role of Chairman of Forward-ME (www.forward-me.org.uk) and as a long time campaigner on behalf of patients with CFS/ME in the House of Lords.

It has come to my attention that the Leeds and York Partnership NHS Trust is planning to reduce the services available to patients suffering from CFS/ME as a cost-saving measure. I have been aware of the highly praised services for people with CFS/ME provided by your Trust for several years.

The newspaper article that I have seen indicates that you intend to withdraw the services of an immunologist and that you will be replacing a senior occupational therapist with a less costly member of staff.

I understand that you have agreed that there should be a month’s consultation before you make your final decision.

The newspaper article claims that, as more is now known about chronic fatigue conditions and as the Trust claims that there has not been a case of misdiagnosis in years, employing an immunologist directly is no longer necessary. I note that the article refers to ‘chronic fatigue conditions’ and not specifically to CFS/ME which has another distinct category in the WHO ICD10. There has always been an association between viral infection and the development of CFS/ME and peer-reviewed research done at Ninewells Hospital, University of Dundee. has presented evidence of ongoing infection in both adults and children with CFS/ME. There is a large body of peer-reviewed evidence of endocrine disruption including pituitary, adrenal and thyroid insufficiencies which do not show up on standard testing in people who are given the blanket diagnosis of CFS/ME. In fact I have well documented cases of two such patients in the York area on my desk. Work at the Newcastle CFS/ME clinic, peer reviewed and published, has demonstrated that 40% of its patients who had been referred from GP’s – did not have CFS/ME but could, in fact, be diagnosed with other serious conditions.

I am sure you will agree that it is essential that patients are given a correct diagnosis so that their symptoms can be treated if treatment is available. In the case of CFS/ME, it is still the case that not enough is known about causes and treatment. Cognitive Behaviour Therapy and Graded Exercise Therapy are management techniques – not cures, and they are known to be unhelpful for many patients with CFS/ME. I am aware of the publicity that accompanied the publication of the PACE Trial. I am also aware that there has been a great deal of scepticism of the published results and the fact that the authors have refused to release their raw data. There are several research projects underway funded by the MRC to investigate biomedical, as opposed to psychosocial, aspects of CFS/ME, including causation and effects.

It would be very reassuring to CFS/ME patients and their carers if you were to reconsider your decision to withdraw some of their services.

I look forward to hearing from you.

Yours sincerely

Countess of Mar