|Maeve Hully Chief Executive |
of the Patient and Client Council
(All photos by Horace Reid)
After registration and a buffet supper the meeting was opened by Maeve Hully, the Chief Executive of the Patient and Client Council. Maeve outlined some of the background to the meeting including a description of Martina Marks’ passionate plea to the Patient & Client Council. It was this plea that put ME and Fibromyalgia firmly on the PCC agenda.
|Jim Wells MLA. Minister for Health|
First up, Lorna Bryson gave her account of growing up as a teenager with ME and being told by doctors that she was making things up to avoid going to school! She described the frustration of the brain fog that prevented her from reading or writing. She spoke without notes, straight from the heart, and the audience was visibly moved. Her final words, on being denied stronger pain-killers because of her young age, was harrowing but she carried it off with dignity and admirable strength.
|Samantha Knox and her partner Paul|
await their turn to speak. Eloise also
There can be no doubt that these illnesses change lives.
|Me - Sally Burch - saying my bit.|
Indeed that was the theme for my presentation. I described my life both before and after the onset of ME and made a plea for better care. I did a practice run at home have shared it on YouTube HERE in the hope that it might be useful to others.
Margaret Peacock spoke next, and described how there were two Margarets - the one before Fibro and the one afterwards. She spoke about how she set up Fibromyalgia Support Northern Ireland to provide a sympathetic network of patient support meetings in the face of so little real care.
Last in this group of patients was to be Thomas McParland, Joan McParland’s husband and carer. However on finding himself feeling too emotional to speak on the night, Fiona McLaughlin kindly stepped in to read his moving account of the seven years Joan spent in bed, and the harrowing times they had when professionals (that should have been helping them) declared that she was making everything up! Having not heard Joan’s full story, I found this testimony particularly emotional to hear.
|Patient testimonies made a clear impact on the audience|
|Iain Deboys Commissioning Officer |
for the Health and Social Care Board
He said that his team had visited the Lothian ME/CFS service in Scotland, and that he felt that this model should be used as the basis for the service provided in Northern Ireland, indeed the CMP was following that model. He spoke about a two hundred and fifty thousand pound investment for services as being "a start". He brought two speakers, Rosalind McLaughlin and Sinead King to describe the CMP, and they gave an account of the 12 session programme that offers lifestyle advice and management techniques for coping with illness.
Note: This is not a service model that could be supported by the charities in attendance at the meeting. The fact that the Lothian service is clearly based on the theoretical psychiatric bio-psycho-social model of the illness makes it entirely inappropriate for patients with an organic disease.
My own view, no doubt echoed by the majority of patients, is that a programme like this might be somewhat useful, but only after patients have been properly assessed, diagnosed and treated by a medical expert, such as could be found at a specialist clinic led by a consultant physician who has a special interest in the physical nature of ME and Fibromyalgia.
These three speakers did not stay after their presentations and left immediately, without taking questions from the floor. However, I am at liberty to share with you that Joan McParland, Antoinette Christie and Jeannette Marley followed Mr Deboys out the door to put their questions to him in the corridor! Joan had had the foresight to bring a sheet of typed out questions with her, which she handed to Mr Deboys, requesting that he make a written reply. She also demanded that the Northern Trust claims that, “many people” have gone back to work after completing the condition management programme, be removed from online descriptions of the programme. She told Mr Deboys that she had Freedom of Information replies that clearly demonstrated the fact that only ONE person had returned to full-time employment to date! He agreed that the word “many” should be deleted.
After that excitement the next to speak was Dr Pamela Bell of the Pain Alliance of Northern Ireland. She spoke only briefly, cutting her presentation short to allow the meeting schedule to catch up. She emphasised the dilemma of misdiagnosis, but expressed hope for the future. Her presentation slides (and those of other speakers) have now been made available on the Patient & Client Council page HERE.
Dr William Weir spoke in considerable detail about ME and this short summary does not do his presentation justice. He delved into some of the history of ME and outlined some of the current research findings that all point to an organic cause for ME. He believes that a viral aetiology will eventually be demonstrated for the illness, and he also praised the work of Professor Mark VanNess. He further explained that the PACE trial was now regarded as a failed study. He voiced the opinion that the Northern Trust pilot, based on the PACE trial methods, was not taking the right route. He said that for good practice, a clinic would be to need to be led by a consultant physician, and not led by either an occupational therapist nor a physiotherapist. He clearly stated that promoting the psychological approach for ME was counter-productive.
Specialist Nurse, Scotland
The next group of patients were then called to the floor to give their testimonies. There was some disappointment voiced that these patients would not be heard by key decision makers who had now left for the night.
Anne Smyth told her story about 30 years of illness with ME. She explained that she had been working as a social worker when she became ill that she spent 14 months bedbound - an agonising time when there was no care or intervention available to her. Although she improved, she has had four major relapses and felt she has missed out on life. She found the support offered by charity ME Support Northern Ireland invaluable because 30 years on there is still "a huge level of ignorance".
|Antoinette Christie speaking with Catherine Burrell and|
Anne Smyth listening after their own testimonies.
Last to speak was Antoinette Christie the chair of ME Support Northern Ireland. She described the horror of having her youngest son fall to ME aged eleven. At the time she was advised to keep him doing normal things, and so he continued to walk three miles to and from school each day, until one day he could do it no more! From that day, he ended up bed bound for four and a half years! Antoinette described how her son effectively returned to being a baby, and how each morning she would look into his room hoping he had survived the night! She explained then the shock she experienced when reaching out for help only to find there was none!
Only a parent can understand this sort of terror she said! It was this that led her to form ME Support Northern Ireland, and to start fundraising for biomedical research into the illness. She concluded by pointing out the need for services for the most severely affected and also the need to educate schools and Welfare Officers about the severity of ME.
|Heather Moorhead, NI Confederation|
for Health and Social Care
A number of patients expressed disappointment at this and so Heather extended the meeting to accommodate some discussion.
A question was raised about how services are commissioned, and it was agreed that although Jim Wells would set policy that it was the Health and Social Care Board that made decisions - however there needed to be greater clarification of the commissioning process.
Another voice from the floor asked about how to better educate GPs and in particular whether they should have more of a duty to educate themselves. It was agreed that a campaign of awareness aimed at GPs was a priority.
Another patient claimed that Northern Ireland was currently the worst country in which to have ME, she spoke about current medical ignorance and made a plea for a consultant led service. She said it would not do to say that Northern Ireland did not have anyone suitably qualified, because we should be sending professionals to America to learn from expert consultants already working in the field.
Margaret Peacock spoke of the need for more support for patients, and more awareness of where patients could go for help.
A question was asked about whether there was a legal requirement for including these illnesses in GP training programmes, to prevent another generation of medical professionals who haven't got a clue!
Then a patient asked about the HSCB remit to adhere to NICE guidelines for the provision of a consultant led service. Apparently Iain Deboys had promised this consultant led service in 2012, but had being claiming lack of finance as an excuse for poor services since 2008. The speaker gave figures of spending in other areas of health and suggested that there was now a "discriminatory pattern of expenditure".
A couple of different people called for disciplinary action against doctors and professionals who showed skepticism of ME and Fibromyalgia as real illnesses. This idea received applause.
A question was asked about the offer of two scholarships to train registrars at the Mt Sinai Clinic with Dr Enlander. Why was this generous offer not taken up?
Further discussion arose around the need for international speakers to help educate our professionals, and also the need for better communication strategies to encourage attendance at events.
Wrapping the evening up Heather gave thanks to the various speakers, and the patients who had shared their stories. She explained that the next step would be a meeting of the Steering Group which included members of the participating charities, and that these issues would be looked at to find a way to take the initiative forwards.
Whilst I missed much of the action at the time, I hope that this give a reasonable record of events on the night. Thanks to Tim Burch, Joan McParland, Horace Reid and Ian McIlroy for their assistance with this report.
Post giving some background on N.Irish situation.