NI MEA Working Group:NI MEA 19th March 2010
The first meeting of the Northern Ireland ME Working Group was held in Castle Buildings, Stomont, on 28th October 2009. (Full reports have already been included on this blog). Following that meeting, Dr Paul Darragh and Anne Hillis at the HSC Board and Public Health Agency, were tasked with looking at how the needs of ME/CFS patients might better be addressed.
In mid January 2010 the HSC Board wrote to all five Health Trusts in Northern Ireland, asking them to submit plans fort he Board's consideration, setting out how Trusts will deliver services to patients with ME/CFS.
In early March 2010 the Belfast Trust responded, to the effect that they have "identified Dr Welby Henry, Consultant Physician in Diabetes and Endocrinology, with an interest in CFS/ME conditions, to be the principal clinical lead in the diagnosis and management of this condition. He will be supported by Jayne Perkes," the Senior Occupational Therapist already in post at the Belfast City Hospital clinic.
* So far there has been no response from the other four Trusts which cater for patients outside Belfast.
The NI MEA views developments at Belfast City Hospital as positive. Dr Henry has long experience in managing ME/CFS patients, and had already an early role in the initial establishment of the BCH clinic. We would like to see this clinic develop and take on additional staff, including nurses and social workers. Currently it caters only for adult ambulant patients. Obviously it should also offer services to children and adolescents, the severely-affected housebound, and the undiagnosed and newly-diagnosed.
Given that the Belfast clinic actually collapsed last July, the road ahead for it will be extremely challenging. But it has been resurrected on a favourable footing, and the NI MEA hopes these conditions will continue to prevail.
So far as we know, GPs in Belfast have not yet been advised the the BCH clinic is back in business. Nor do we know whether the Belfast Clinic will accept referrals from the other Trusts. In April 2007 the previous head of the clinic concluded that the other Trusts were making no efforts to cater for ME patients, and from that point he began to refuse their referrals. The current BCH management may continue to take the same view.
That would be bad news for ME patients from outside Belfast, who would then continue to have no access to specialist care. The other four Trusts would need to come up with satisfactory responses, and soon.
In September 2009 one of the reasons given by BCH for the closure of their clinic was lack of demand from Belfast patients. Insufficient numbers may have been due to the then location of the clinic within psychiatric medicine, a siting which large numbers of ME patients considered to be inappropriate and repellent.
Although GPs may not yet have received formal notification, the official position is that the BCH clinic has begun to function again. Individual patients should exercise their own judgment on where, when and how they want to be treated.
But if patients were to contact their GPs expressing their clinical needs, that might then result in increased referrals to the newly-rejuvenated Belfast Clinic. The NI MEA does not want a return to the situation where hospital managers can say there is " no demand". There is a vast amount of unmet need among ME patients in Northern Ireland, and NHS services will not expand unless that need is clearly spelled out to all concerned.
The NI MEA Delegation
The Chair, Ken Hull, Horace Reid, and Mrs Jo Calder (the NI Administrator), are the core members of the NI MEA delegation on the NI ME Working Group.
The Administrator has recently contacted Mr David Galloway, Chair of the NI ME Working Group, in relation to scheduling another meeting, but this cannot take place until responses have come in from the Trusts.
In some ways we seem to have come full circle regarding the CFS Service at the BCH! The NI MEA was first contacted by Dr Welby Henry on 1st April 1998, informing us that a new Chronic Fatigue Service had been set up within the Occupational Therapy Depatment and included a copy of the memo to "GPs and any other doctors interested in making CFS referrals".
