The care pathways for people with ME/CFS in Northern Ireland are not well established and there is no specialist service for people with ME/CFS in the Province. But it seems that progress is being made, albeit slowly.
A key figure in local negotiations – Mrs Joan McParland, of Hope4MEandFibro Northern Ireland – wrote to us on 30 August 2019:
“The outcome of many years of meetings and negotiations was the launch of a new care pathway for fibromyalgia in 2016. Interviews then took place for a new ME Clinical Lead in late 2018. One of our committee members received specialist training, to enable her to sit on the interview panel for the ME Lead post. Although strict confidentiality was observed during this process, having a very trusted charity representative on the interview panel does encourage much hope of a suitable person being chosen to take on this new role to serve the estimated 7000 N.I. ME patients.
“We attended a meeting with the Health and Social Care Board in July 2019 and we were informed they were doing all they could to hurry up the complicated process of setting up the new ME service to cover all N.I. Trusts. The good news was that severely affected patients would be top priority for home visits but it is still unclear as to when GPs will be able to refer patients for consultations with the new ME Clinical Lead.
“One of the roles of the Clinical Lead, will be to educate other professionals on M.E. and ultimately form specialist services in all N.I. Trusts. We were also assured that patients would be included in the future decision making process. Although things are going in the right direction, albeit it slowly, there is much work yet to be done – one of the most important being services for children and young people with M.E.”