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Support Group for Severe M.E. Sufferers

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LOCKERBIE ME/CFS/FMS CONFERENCE 19TH MAY 2004, REPORT

25% GROUP POWER POINT PRESENTATION

25% ME GROUP – SEVERELY AFFECTED ANALYSIS REPORT PRESENTATION

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This conference was organised by Dumfries & Galloway ME Support Network in order to bring together representatives and speakers from different areas of healthcare services, social services and the voluntary sector in order to try to highlight problems faced by sufferers in gaining access to primary healthcare services, benefits, education and other public services.

We were asked to give a presentation of our recent Essential Services for the Severely Affected.

The event was very well attended (around 140 delegates attended on the day). This was perhaps due to the very full programme and the range of speakers present.

 

MORNING SESSION:

The morning session was officially opened by John Ross, CBE FRAGS, Chairman, NHS Dumfries and Galloway who welcomed the delegates to the conference. This was followed by a short address by Russell Brown MP, Member of the Cross Party ME Group, Westminster, who spoke briefly about recognising the need for more rigorous campaigning in terms of securing funds for biological research into CFS/ME.

Dr Gregor Purdie, GP Advisor NHS Board (also one of the co-organisers of the event) spoke at length regarding developing a comprehensive strategy for Dumfries & Galloway Primary Healthcare Services incorporating the unique and complex needs of ME sufferers and working towards a tailor-made service for ME sufferers .

 

lockabie picIt was then time for our presentation. We had been given a 25 minute slot for this presentation (the longest of the day) and, even then, we’d had to carry out some drastic last minute editing on the train journey to Lockerbie in order to cut the presentation to fit the time slot!! We had prepared a PowerPoint Slide Presentation to accompany the Report and our presentation was very well received – some obviously being fairly shocked by some of the statistics. MSPs and health professionals alike approached us to enquire whether they could use part of our Report to frame, for example, Parliamentary Questions, reports to their respective Health Boards etc. (We were more than willing to oblige!) 

Following this, Theresa Lawson, of the Benefits Agency, spoke briefly on the different options available regarding disability benefits, how they are worked out etc. and provided a brief outline of eligibility criteria.

Jill Moss of AYME was the next speaker who gave a very good short talk about the problems faced by children with ME in relation to the education system. She stated that children still were “faced by a large brick wall” when it came to trying to receive education and added that the “system” still fails them miserably taking no, or very little, account of their needs as disabled persons. Jill felt that the system must undergo a radical change in attitude and take steps to accommodate the needs of these children to best deliver and support their education in relation to their illness.

The morning session was ended (no rest for the wicked eh!) with two workshops being held:- one on issues which could be included in a policy on educating children with ME, and the other one dealing with ways to maximise benefits and support people with CFS/ME/FMS. This gave delegates the chance to air their own grievances and to discuss individual problems encountered within these areas.

 

AFTERNOON SESSION:

Perhaps the most poignant and hard-hitting part of the day came just after lunch. This was when a young girl, Samantha Kelly, (14 years old) recited a poem she had written for her mother, a severely affected sufferer who had taken her own life last August. Of all the presentations, this poem was the most moving part of the day for all the delegates and really got the message across about how devastating this illness can actually be.

Following this, the afternoon session was officially opened by Alex Ferguson MSP, Chair of the Cross Party Group on ME, Holyrood. Alex spoke about the progress made within the Cross Party Group to date, the Report carried out last year by the Short Life Working Group concerning the services needed for sufferers and he also outlined the need for more resources to be made available to support research into the biological causes of ME/CFS. He felt that things were slowly changing within the system but that more active campaigning was still required in order to move forward and hopefully start work on finding the cause and hopefully, the cure of this illness.

Dr Harden Carter, Public Health Consultant, Lothian Health Board, gave the official Scottish Executive perspective on ME/CFS, stating that he felt some progress had been made in this area but that more resources were needed throughout Scotland in order to represent sufferers more fully.

Dr Gregor Purdie then presented a second short account of a report by Dr A Chaudhuri, Neurologist, at the Southern General Hospital in Glasgow, entitled “ Commentary on Fatigue in Neurological Disorders” published in Lancet. This report was aimed at the healthcare professionals within the audience and was fairly technical in its terms.

 

lockabie picDr Vance Spence, Chairman of the ME Research Group (MERGE), Honorary Senior Research Fellow, Institute of Cardiovascular Research, University of Dundee, then gave a stimulating, if somewhat technical, presentation regarding current research and developments in ME. Dr Spence, himself a sufferer for 23 years, was very encouraged and enthused by research studies being undertaken by MERGE at present, some of which are being published in June of this year. He remains convinced that a cure will be found for ME/CFS and called for more resources to be made available to researchers in order to fund biological research studies such as those undertaken by MERGE.

Similar to the morning session, the presentations were followed by another two workshops, dealing with working towards a strategy for the care of children and adults with chronic fatigue illnesses in Dumfries and Galloway. (One was based on Primary Care Services and the other on Secondary Care Services).

Finally, Christine King, Head of Strategic Planning and Commissioning, NHS Dumfries & Galloway, was asked to “round up” the day and provide a brief overview of the main topics covered by the speakers. The speakers were once again asked to take the stage and a very short open “question time” ensued.

However, since it was after 5pm by this stage, most of the delegates were beginning to “wilt” and show signs of fatigue themselves. The “question time” was therefore very brief.

To summarise, we feel the whole conference was a very worthwhile exercise in bringing together a cross section of healthcare professionals, social services, researchers, the voluntary sector and sufferers themselves who all had their part to play on the day. We would like to see similar events being set up within other regions of Scotland and hope that this conference marks the starting point of way we can all pull our expertise together in working towards a common aim:- improving the daily lives of sufferers and their carers.

 

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