The politics to secure a replacement ME/CFS service in Northern Ireland seem to be falling into place following the closure of the Windsor House clinic at Belfast City Hospital in July. But the shape of the future service is still far from clear.
Assembly members from across the political divide, who have been badgering for a better service since July, got some answers from health minister Michael McGimpsey during question time yesterday (October 12) – the day of Hillary Clinton's historic visit to the province.
"I met representatives of the Northern Ireland ME Association recently to hear their concerns at first hand", Mr McGimpsey said in response to questions from Paul Maskey (Sinn Fein, Belfast West) and Alex Attwood (SDLP, Belfast West),
"I understand that patients do not want a psychiatric-led clinic in Belfast; rather, they want a consultant-led service that is based in a neurology department. I have asked my officials, in association with the Health and Social Care Board, the Belfast Trust and patient representatives, to examine how access to the services that ME sufferers require might be improved. An initial meeting involving those key stakeholders will be held in the next few weeks".
The Minister, who acknowledged that there were 7,000 people with ME/CFS in Northern Ireland left without a specialist service, said that in its final year the Windsor House clinic had seen only 16 patients. The service closed following the retirement of consultant psychiatrist Dr Noel Scott, who ran it on a voluntary basis.
The occupational therapist involved – who is held in high regard by people with ME/CFS – is still working with existing patients.
Mr Attwood said he welcomed the fact that the Minister, like the World Health Organisation, recognised that ME is a neurological condition and "should be treated in that context, rather than the way in which it was treated at Windsor House, which is a psychiatric-based facility".
He had heard that the Minister had been recommended to set up a shared service with the Republic as neither the North nor the South had the critical mass to provide the service required. "Given the number of people who have been diagnosed and who are waiting treatment, does the Minister agree that a better co-ordination of services and facilities on the island would develop a better service generally for those patients?"
The Minister commented: "I am not aware of any all-Ireland proposal. I am looking at the needs of patients in Northern Ireland. We are guided by the NICE guidelines, which were published in 2007 and which the Department endorsed in a circular that was issued in January 2008."
He added: "We are looking at best practice in other areas. We are seeking to ensure that sufferers have access to the required services and, in common with the NICE guidelines, a neurology-based service rather than a psychology-based service".
The idea of a specialist ME adviser in the province was mooted by Jim Shannon (DUP Strangford). "Many ME patients have asked their elected representatives to consider whether a specialist ME adviser could be designated for one of the hospitals", he said.
The Minister said he would listen to what comes out of the meeting with stakeholders – together with work to develop a physical and sensory disability strategy and a neurology review. "No doubt we can tease out whether to have one centre in Northern Ireland or use the services that are available throughout the health and social care framework to create a system in Northern Ireland that is signposted by GPs."
Kieran McCarthy (Alliance, Strangford) said: "Some 7,000 patients have had nowhere to go since July. Does the Minister think that something more urgent could have taken place before now? We are only now talking about starting to meet people."
The Minister replied: "Mr McCarthy says that ME patients had nowhere to go. That is not true. Patients have the whole health and social care system to address their needs, and it does so."