Concern at closure of ME clinic in Northern Ireland

From the Ballymena Times, 29 September 2009

SIR – The recent closure of Northern Ireland’s only ME Clinic at Belfast City Hospital was not an accident. Poor long term policy planning had made it inevitable. From the beginning the consultant in charge was given no remuneration of any kind; he worked voluntarily. Originally the unit was the regional referral centre, with many patients coming from South Down, Mid Antrim, and west of the Bann. There was always a waiting list. But in 2007 it began refusing patients from outside Belfast.

It was a profound mistake for this clinic to be managed by the Psychiatric Department in Windsor House. Naturally many patients found psychiatric classification inaccurate and insulting, and many boycotted the unit for that reason. Funding was in place for a second Occupational Therapist, but it was withdrawn recently. Notice of closure was quietly circulated internally in July 2009, but patients and MLAs did not find out until September.

The Department of Health at Stormont says that closure of the clinic was due to the “pressure of competing priorities.” There are 6750 M.E. patients in Northern Ireland, 4935 patients with breast cancer, and 2445 with Multiple Sclerosis. Which DOH civil servant decided that, alone among these different clinical conditions, only ME patients are to have no specialist unit?

The Belfast Chief Medical Officer Dr Michael McBride and his officials are tasked with advising the Health Minister, and they bear much primary responsibility for this outstanding example of NHS failure. In 2002 the CMO for England & Wales launched an initiative to develop specialist ME services nationwide. In 2006 £8.3m was ring- fenced and used to establish new clinics. These ME services in England are as yet primitive and unsatisfactory. But at least a beginning has been made there. On 12th November 2007 we met Dr McBride, urging him to follow the recent example of his English counterpart. He dismissed our suggestion in a few words. Since then the only progress made has been backwards.

Now that their failure has been exposed, the Minister and his civil servants are running for cover. ME treatment is available they say "ranging from primary and community care to specialist regional neurology services, depending on assessed individual needs". Local MLAs and MPs know this is almost pure fiction. This week Margaret Ritchie the Minister for Social Development said that ME patients among her constituents “face daily a battle with health care providers to receive appropriate care and treatment, and have difficulties getting referrals to specialists”. GPs know little about this emerging illness, and there are almost no local hospital consultants with enough experience to guide them.

Compulsory NHS standards for the care of ME patients were published in August 2007. They stipulate that there must be expert hospital provision for adults, adolescents and children. GPs must be competent to diagnose and manage ME, and diagnosis must be arrived at within 3-4 months. Doctors must assist ME patients in applications for Social Security benefits. Bedbound patients must receive a full range of domestic support at home from Social Services. The Minister and his DOH officials are careful not to refer to these mandatory national guidelines – for the good reason that very few of these services are being provided by the NHS in Northern Ireland.

With little additional financial outlay, the ME clinic at the City Hospital could easily be rescued. Jayne Perkes, the popular and ME-competent Senior Occupational Therapist, is still in post and is still funded. NIMEA know a number of ME-experienced and patient- friendly physicians who could head a revived unit. If one of them will accept a new and properly-funded part-time post, patient throughput could easily be raised to previous levels. The clinic must of course be free to accept referrals from all health boards across the Province. One further stipulation: the NICE ME guidelines of 2007 emphatically refused to endorse the unproven theory that ME is a

psychiatric condition. Never again therefore, must ME patients in Northern Ireland be forced to accept automatic and inappropriate psychiatric referrals.

The ME Clinic at Belfast City Hospital was the only specialist facility we had, at one time serving a large Province-wide patient population of about 7000. It can be salvaged. We hope that MPs and MLAs of all parties at Stormont will exert themselves to save it.

Yours,

Ken Hull, Chairman,

Horace Reid, Patient.

Northern Ireland ME Association,

28 Bedford Street,

Belfast BT2 7FE

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