Certainly patient participants left last Monday night’s meeting with a new mood of optimism, and a real sense that our voices had been heard!
This post gives the background to the situation in N.Ireland. An account of the meeting itself can be found here: InvisibleME Symposium.
Northern Ireland's ME and Fibromyalgia services are erratic at best and non-existent at worst.
A "Fatigue Clinic", that operated in the Belfast City Hospital, closed last year when its lead consultant Dr Welby Henry retired. Apparently, this clinic was not a formally commissioned service, but only run on a “special interest” basis. Patients were thus left with no expert consultant to whom they could be referred by their own General Practice doctors (GP).
Currently this unhappy situation is compounded by the fact that doctors in Northern Ireland receive no formal training on ME and GP surveys have demonstrate that most GPs are not fully confident diagnosing or treating either condition. Indeed it seems misdiagnosis is common. Some patients have described finding themselves in front of unbelieving doctors and being told to "pull themselves together" or being offered only psychiatric treatments for their physical problems.
Obviously this situation cannot go unchallenged!
The Patient and Client Council (PCC) works with patient groups to facilitate change. Their attention was drawn to the problems ME and Fibromyalgia patient encounter by Martina Marks (Chair of Newry and Mourne ME Fibromyalgia Support Group) when she passionately presented the situation to a PCC meeting back in 2013. As a result, the PCC came on board to help open the channels of communication between patients, charities, medical professionals, and key decision makers in the Health and Social Care Board (HSCB).
The wheels of change move slowly however, and impatient for progress the Newry & Mourne ME Fibromyalgia Support Group continued with their mission to educate medical professionals. Since forming four years ago, this group have brought a number of international front-line medical researchers to Northern Ireland. Medical professionals who attend these conferences have been rewarded with Continuous Professional Development points from the Royal College of Physicians.
Joan McParland, the founder and co-ordinator, of the Newry and Mourne group leads this campaign with such determination and vigour that it would be easy to forget that she herself spent seven years bedbound with ME, and that she still struggles through debilitating illness daily!
Looking back, it seems now that an event in February 2014 marked a turning point. Professor Mark VanNess from the Workwell Foundation, California spoke to a packed house in Stormont, Belfast, about the problems ME patients face with exertion. He detailed how Graded Exercise Therapy (GET) can by physiologically harmful due to the broken aerobic pathways of ME patients. His message was well received.
At this Stormont meeting the Newry & Mourne Group also organised a silent protest, and made the request that Northern Ireland adopt the Canadian Consensus Guidelines for ME (known as CCC).
Subsequently an online petition: “Adopt CCC for ME in N.Ireland” was created. In just a couple of months this was signed by over 1200 people and in June 2014 the petition was presented to the Local Assembly by Local Assembly Minister Dominic Bradley along with a justification for the plea.
Note: Northern Ireland, although part of the United Kingdom of Great Britian and Northern Ireland (UK), has its own Local Assembly where decisions can be taken independently of the main UK government. Thus it is legally possible for N.Ireland to adopt the CCC whilst the rest of the UK does not.
After much work behind the scenes a motion was tabled to the Speaker of the Local Assembly by Dominic Bradley MLA. The motion reads:
"That this House calls on the Minister of Health to adopt the Canadian Consensus Guidelines for the accurate diagnosis of ME/CFS, and further, to establish a regional specialist ME/CFS consultant post to lead a multidisciplinary team which will diagnose and treat patients with ME/CFS and the associated syndrome Fibromyalgia."
Following this motion being tabled, the Newry and Mourne Group have been informed that the matter will go up for parlimentary debate at a date still to be confirmed.
#InvisibleME meeting on 23rd February 2015
It was against this backdrop that the PCC renewed their efforts to find out what the charities had to say, and also to set up meetings with representatives of the Health and Social Care Board. Establishing these meetings was not an easy task and there were a couple of false starts.
However eventually the #InvisibleME Symposium date was set and the charities given the go ahead to promote the event, by urging their GPs and MLAs to attend.
The four charities involved in promoting the event were:
Newry & Mourne ME Fibromyalgia Support Group
ME Support Northern Ireland
Fibromyalgia Support Northern Ireland and
ME FMS Awareness Northern Ireland
Three of these charities also put forward patient representatives to tell their stories about life with ME and/or Fibromyalgia.
The Newry & Mourne Support Group took the opportunity to prepare a new banner to illustrate the years lost to these debilitating illnesses. The banner, shown below, was prepared by Richard and Debbie Deboo in the weeks prior to the event, and it was displayed for the first time at the #InvisibleME symposium.
More details on the symposium itself HERE.