Results of Meeting

NI MEA Meeting with Minister of Health, Michael McGimpsey
at Parliament Buildings on Monday 28th September.

This update is a brief outline of what took place at that meeting. The NI MEA was represented by Ken Hull, Chair of the Committee, Horace Reid, Jo Calder (Administrator), and one of our members, Ronald O’Neill. We were accompanied by Dr William McCrea, MLA, who had been instrumental in making this meeting happen, and one of his constituents, Paula Gilfedder. The Health Minister was accompanied by David Galloway, Director of Secondary Care, who has immediate responsibility for the provision of services.

After brief introductions, Ken began by giving a short overview of the Association, the services it provides, and the aims of the NI MEA. He also took the opportunity to thank the DHSS&PS for the Core funding it provides to employ the Administrator.

Next to speak was Ronald O’Neill, who read out a prepared letter addressed to the Minister, basically outlining his own personal experiences with the illness, the effects and symptoms of ME, and his struggle to get a diagnosis, and any form of treatment.

Horace then spoke, again using his extensive knowledge of the NICE Guidelines to explain why there must be better services for ME, gave a breakdown of costs to provide a full specialist clinic, to include facilities for diagnosis, and for staff which included trained ME nurses and social/welfare workers. He dealt with the situation presently on-going with the closure of the CFS Service, and emphasised that it could still be a viable concern, because the Senior Occupational Therapist was still in post and being funded. He advised the Minister that the NI MEA had the names of two ME Specialists from England, who would be ready immediately to take over the running of the Service at BCH, and the cost involved, and made it very clear that any future ME Clinic must have a Clinical Head.

A suggestion was put forward that, whilst ME is still an “emerging” illness, more should be done to ensure that GPs received more training, and indeed that Medical Students also received some form of instruction. The Administrator informed the Health Minister that on 2 occasions, she had written to Queens Medical School, asking for a meeting with the Head of Department, but had received no response. Mr McGimpsey then suggested that perhaps the NI MEA should, once again, write to QUB Medical Faculty, and this has now been done. As yet, we are awaiting a response.

The Administrator at one stage asked both the Minister and Mr Galloway if they knew anyone with ME – the Minister replied no, Mr Galloway said that he did. The Administrator then presented them with some Information Leaflets, and urged them to read, in particular, the one called “Understanding ME”, which outlines in great detail the everyday symptoms of ME, and how it feels like to have this illness. She then addressed the plight of a particular group of ME patients – the children and teenagers, and took the opportunity to emphasise the specific problems faced by younger sufferers. She also made it very clear that, when Mr Galloway talked about Physiotherapy as one form of treatment that this was a non-starter.

Everyone voiced their total rejection of either CBT or GET as forms of treatment, and both the Minister and Mr Galloway was left without any doubt that ME patients would robustly fight against these therapies.

CONCLUSIONS REACHED AT THIS MEETING

1. The Minister confirmed that there was going to be a NI ME Working Group established, to consist of patients, Health Boards, Health professionals and Commissioners.
2. It was envisaged that the first meeting would take place at the end of October
3. The Minister will be making enquiries regarding the viability of the CFS Clinic at BCH.

 
After waiting many years for a personal meeting with any Minister for Health, the NI MEA was pleased with this outcome – the Minister gave us approximately 50 minutes to voice our views, though both he and Dr McCrea had to absent themselves for a little while to take part in an Assembly vote.

There is still a very long way to go, but the NI MEA has by now got used to playing the waiting game! Arrangements are already in place for this initial meeting, and updates will be posted as and when they are available. The Administrator also used the opportunity to present Minister McGimpsey with the NI MEA signed Petitions which it had organised, and was part of the Lobby Campaign it also instigated – we feel our campaign has played a big part in getting this far to date!