Great Strides Forward

The past month has been a very busy time for the NI MEA!

On 18th October, a delegation met with the Education Minister, Mr John O’Dowd at Parliament Buildings, in which talks took place relating to the problems faced by children and teenagers with ME, and the struggles they have on a daily basis even trying to attend school due to their illness. Presentations where made to the Minister by the NI MEA delegates: the Chair Ken Hull, the NI MEA Administrator, Mrs Jo Calder, the Association’s Education Advisor, Dr Sylvia Bolton, and its Paediatric Medical Advisor, Dr Larry Martel. There was also a written statement from a Parent representative, Mrs Shelley Gilfillan, who had been too ill to attend in person. We found the Minister was very aware of ME, paid particular attention to several issues raised, and responded very favourably indeed to our concerns. The Minister was also given one of the NI MEA’s Specialist Education Packs, which is available, free to any school or college who may want to request this. The NI MEA was very pleased with the outcome of this meeting, and with the positive atmosphere.

On 27th October the NI MEA was once again at Stormont, this time meeting with the Health Minister, Mr Edwin Poots, in Castle Buildings. The delegates were Ken Hull, Jo Calder, Dr Sylvia Bolton, and they were joined this time by Mrs Gillian Wright, an NI MEA Committee member. Gillian was accompanied by her mum, Mrs Valerie Cunningham, who not only is Gillian's Carer, but also is a very active supporter and fundraiser of the NI MEA. Once again we were met with a very positive approach from the Minister, who also knew about ME, and the ramifications of the illness, as well as the problems faced by patients. This time the main discussion surrounded the attitudes of those of the medical profession in general, as well as issues surrounding welfare benefits. The Minister was also given one of the NI MEA’s Specialist Medical Packs – again these are free to any GP or other associated medical professional. The NI MEA felt that this had also been a very positive meeting.

So, we were very pleasantly surprised indeed, when, a few days later the Administrator was contacted by a member of Minister Poots’ staff, asking what help the Minister could give to the NI MEA to distribute these Medical Packs to all GPs! So, the Department of Health is going to fund the costs of distributing these Specialist Packs to every Health Practice in Northern Ireland. The NI MEA is extremely grateful to the Minister for organising this, and we see it as a major breakthrough in ensuring that GPs have as much information about this illness, so that can try to help their ME patients.

On 8th November the Association met with delegates from the Health and Social Care Board, which is the organisation overseeing the Health Trusts. The NI MEA delegation was Ken Hull, Jo Calder, and Mrs Hazel Bland, Hon. Secretary of the NI MEA. Ken Hull presented the delegates with a document called “Report of the Scottish Short Life Working Group”, which dealt with the setting up Specialist Facilities for ME patients. Whilst this was written pertaining to Scotland, it is widely accepted that the incidences of ME here in NI is very similar to those in Scotland. Although the example of the specialist clinic model in this document does not go as far as what the NI MEA would be hoping for, it does however contain an acceptable model from where to begin to develop proper services. The Administrator raised the issue that most GPs still do not fully understand the illness, and therefore are reluctant to know how to treat their patients. She also pointed out that it was not only adults who needed some sort of Specialist Facility, as consideration had to also be given for an Adolescent Facility. She then raised the issue that, when ME patients needed to apply for Welfare Benefits, it was their GPs who had to sign applications, therefore making it crucial that GPs knew much more about ME. Mrs Bland discussed the issues pertaining to teaching medical students, and the merit of looking at the possibility that when medical students go into GP practices as part of their course, some ME training could be introduced. In view of this, the NI MEA had now written to the department concerned with such training and has requested a meeting. The discussions drew to a close with assurances from the HSCB delegates that all matters which were raised would be discussed, and that it was hoped another meeting would take place in the New Year.

The NI MEA is hoping to report further progress and developments very soon!