ME Working Group

Report On Discussions of Initial Meeting of ME Working Group Held at Stormont, October 28th 2009

Representatives from DHSS&PS & Health Care Trusts
David Galloway	Director, Secondary Care, DHSS&PS
Michael Sweeney	Asst. Director, Physical & Sensory Directorate, DHSS&PS
Tom Robinson	Asst. Director, Secondary Care, DHSS&PS
Christine Smith	Secondary Care Directorate
Anne Hillis	Programme Planner, Elderly & Physically Disabled, Eastern Area, Health & Social Care Board
Dr Paul Darragh	Consultant PHA, Eastern Area, Health & Social Care Board
Marie Heaney	Older People’s Services, Belfast Health & Social Care Trust
Frank Young	Co-Director for AHP Services (including OT) Belfast Health & Social Care Trust
Valerie Larmour	OT Manager, Belfast Health & Social Care Trust
Peter Watson	Co-Director for Head & Neck Services (including Neurology), Belfast Health & Social Care Trust
Representatives from the Northern Ireland ME Association
Kenneth Hull	Chair, NI MEA Committee
Jo Calder	NI MEA Administrator
Shelley Gilfillan	Network Contact, Co Tyrone
Horace Reid	Former Committee Member, NI MEA

After a welcome from the Chairman David Galloway, and brief introductions, Mr Galloway began by saying that the Working Group was NOT going to be a Formal Committee, it was NOT going to drag on for a very long time, and that the main objectives were ultimately try to achieve practical access to services, and what services need to be provided for ME patients.

Ken was first to speak. He began by thanking Mr Galloway for the prompt follow-up on arranging the initial meeting for the Working Group, and also once again expressed appreciation to Dr William McCrea for initiating the first meeting with Minister McGimpsey, and to other MLAs who have played a major role in highlighting ME. Ken then outlined the main aims of the NI MEA, and the services offered to ME patients. He went on to say:

“NI MEA believes that there is an overwhelming need for a Specialist Clinic in Northern Ireland, and indeed there should also be satellite clinics established and spread across the country. The loss of the CFS Service at Belfast City Hospital has been a blow to sufferers, but it had two disadvantages. First, it was limited in what it could do, being staffed by one part-time Occupational Therapist.

Secondly, it was situated in Windsor House Psychiatric Unit. The great majority of sufferers resent ME being classed as a psychiatric condition, and we would need to be careful that we do not go down that route”.

He finished his presentation by outlining the need for proper Financial resources to be available prior to any new Service, and hoped that the format of the Working Group would continue to represent ME patients.

The Administrator began by thanking Mr Galloway for the opportunity to make the case for all ME patients, and said that, as Administrator, she dealt on a daily basis with all the “grass roots” issues of ME patients, and as such hoped she would put across her points concisely, and that what she had to say would prove constructive to the Working Group. The following is the presentation which she gave:

Since members have been informed via the NI MEA Newsletter on 13th October, to date I have received 17 letters from different areas of N I, each one outlining their very personal stories of the illness. There are striking similarities of course with symptoms, problems with diagnosis, lack of treatment, understanding and assistance. After reading each individual letter, the following points are made over and over again:

• The need for medical students to be taught about ME
• The need for more GPs to also receive training in recognising and diagnosing
• No CBT / GET / Physiotherapy
• The overwhelming need for some sort of ME consultant / specialist
• The overwhelming need for a clinic / treatment centre specialising in ME
• The lack of understanding within the Benefits System
• The sooner the diagnosis the better the prognosis – those who have been ill for many years also seem to be those who waited a long time (years in most cases) for a diagnosis. I can back up this statement on a personal basis, having waited 6 years for a diagnosis.
• The need for some form of Outreach service for those who are housebound or bedbound
• The proof that ME patients are currently receiving what can only be called “haphazard” assistance – a few have readily said that their GP is supportive and that they are lucky to have been awarded either DLA or ICB, or ESA as it is now called, but most have related an entirely different experience both with their doctor and with the Benefits Agency
• Ensure that children and teens are suitably catered for both within the school/college environment, if they are even fit to attend, and for there to also be a Paediatric Specialist Facility for ME

The NI MEA provides Advisors in both general Medical and Paediatric medical, an Education Advisor, and a Benefits Advisor. It has already drafted a proposal regarding some form of outreach service, but is not in a position financially to take this proposal forward.

On a slightly different note, since 7th October to 27th October, as Administrator I have received no less than 12 NEW requests for Enquiry Packs regarding ME. That works out at about an average of 4 new ME people per week that the NI MEA knows about, but it also knows that there are others who do not contact us. I would like to finish with 3 random quotes from those letters which members sent:

“The only consultant that has been really helpful since I was diagnosed is Dr Weir who I consulted through NI MEA”

“Please give more support to the NI MEA, they are all we have got and they can’t do all the work themselves; they are in danger of disappearing altogether due to lack of funding and a lack of awareness and backing….”

“The Northern Ireland ME Association has been invaluable throughout my illness. Please give weight to their advice.”

Horace began by voicing his approval of not having long drawn out proceedings in relation to the Working Group. He then spoke very briefly, but, however, made excellent points by saying that any ME Services will have to be created - at present there is no Specialist Clinicians, and no other staff to implement any services which may be established. Therefore, everything will be “starting from scratch” so to speak, and because of this, he urged the DHSS to get it right first time. He went on to say that at this stage, patients will only be impressed with results.

He then raised the issue of Jayne Perkes, the part-time Occupational Therapist who was with the CFS Service at Belfast City Hospital. Horace told the DHSS representatives that, whilst a lot of ME patients had reservations with the CFS Service as such, all those that he knew of had nothing but praise for the help she has given to them. He urged the DHSS&PS to ensure that Jayne was kept in her post. He also suggested that GPs should now be told that referrals will again be on-going. At this point David Galloway asked Tom Robinson, Assistant Director, Secondary Care Directorate, to respond to Horace’s enquiry. He stated that as far as they were concerned, there were no plans for Jayne Perkes to cease to undertake her current post.

A short discussion took place, in which it was acknowledged by the DHSS&PS that at the moment there were no pathways to treatment. The NICE guidelines clearly state that diagnosis of ME has to be made within 4 months, and Clinicians now need to be able to do that. David Galloway commented that he would ask the Trust to look again at the BCH Clinic, and that he would also write to the Board regarding NICE guidelines regarding diagnosis. He also felt there needed to be clarity with GPs in diagnosing, and that ultimately there should be access to all in Northern Ireland to services.

Shelley Gilfillan, who acts as the NI MEA Network Contact for Co Tyrone, made a 180 mile round trip from her home (a total of 4 hours driving) just so that she could speak on behalf of ME patients west of the Bann. She began by saying that she had ME, but, more importantly her son Glenn (now 22) has had ME since he was a child. She emphasised very strongly that ME was not a mental problem, and resented the psychiatric implications that are still made.

She stated that, in Castlederg, where they lived, there was NOTHING for ME patients, that some provision is urgently needed, and expressed the view that she quite envied those with ME who lived in Belfast. Shelley then said that she felt disappointed that the discussions seemed to be focusing only on the Belfast area. Horace then decided to ask Shelley a few questions.

HR: “You drove yourself from Tyrone this morning?”
SG: “Yes”

HR: “How long will it take you to recover, after today?”
SG: “A week, perhaps 10 days”.

HR: “And the same would apply to all ME patients if they had to travel to Belfast to access specialist ME care?”
SG: “Yes”

HR: “You and your son both have ME?”
SG: “Yes. My son is severely affected and bedbound”

HR: “How will you be able to look after him this week?”
SG: “Fortunately my husband has a day off work tomorrow”.

At this stage David Galloway seemed to have “got the message”, and assured Shelley that the proposed new Belfast ME Clinic would have an outreach centre in Co Tyrone.

Shelley then asked Mr Galloway: “when will we have the outreach clinic?” He replied “It’s under active consideration”.

She then enquired “Who are you going to send?”. Mr Galloway then replied “Staff from Belfast”.

Shelley responded with “But you said earlier that you haven’t got any staff yet”. To which Mr Galloway replied “Well, we will have to train them…”. He went on to make the point that obviously they would have to start from the beginning and it would take time to get everything operating.

Shelley finally took the opportunity to totally rubbish the Examining Medical Practitioner who had come out to assess her son Glenn for his DLA claim.

Overall we did get a genuine impression that Mr Galloway was responsive to the views and concerns raised, and the NI MEA feels that for a first meeting it was able to give a lot of “food for thought”. Prior to this meeting, a “pre-meeting” had taken place with DHSS&PS and Boards representatives, obviously to have some form of strategy in place. The Administrator immediately requested if the Association would be given access to those talks when she returned to the office that afternoon. The meeting lasted 2 hours, and was so in-depth that other items on the Agenda did not get discussed! Another meeting is due to take place in the New Year.