Myalgic Encephalomyelitis

Part of the debate – in the Scottish Parliament at 5:24 pm on 23rd January 2002.

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Photo of Susan Deacon Susan Deacon Labour 5:24 pm, 23rd January 2002

I join other members in congratulating Alex Fergusson on securing the debate. I also congratulate a range of colleagues and others who have been involved in the cross-party group on ME since the inception of the Parliament. They have worked relentlessly to raise awareness of the condition.

Like many others, I have moved over the years from a position of relative ignorance to a gradually growing awareness. First I had experience of a friend suffering from the condition, then a colleague and then a relative. Latterly, over the past few years, I have heard directly from several of my constituents who have been affected.

During my time as Minister for Health and Community Care, I heard much about the condition. What frustrated me enormously, perhaps more than was the case with other conditions, was our inability to deal with it, not least because, unlike most conditions, there was not even agreement about ME's existence or what it meant, let alone what could be done about it. For that very reason, as Alex Fergusson said, the significance of the recent publication of the report of the independent working group on ME should not be underestimated. We now have something that has brought together patients, carers and, crucially, the medical profession, with an agreed analysis of the problem and an agreed series of recommendations on what should be done about it.

I would like to concentrate my remarks on making a plea to the Executive to ensure that, now the report finally exists, action is taken. It has been a long time in coming and I know that many people have waited anxiously for it. I hope that it will now be put to good use. I would like to add a few suggestions as to what I hope the Executive will do with it.

It is important that a specific group or mechanism is put in place in Scotland to take the report forward. The role of that group or mechanism should not be to revisit the report or to reinvent the wheel of the analysis it contains, but to act on it and develop the work that has already been done. I also urge the Executive to ensure that patients and carers are kept involved in that process. What flows from the report will be all the more effective if they are directly involved in shaping the actions.

Any action that is taken should look beyond health and include other agencies and organisations. I am thinking particularly of social work departments, which could have a wider role in supporting individuals and their carers, and of schools, which should be able to recognise and deal with the condition more effectively for the many young people who are affected.

I know that the cross-party group and others have argued for some time for a specialist centre. I am sure that that degree of expertise or specialisation in Scotland could take a number of different forms. There is certainly a need to ensure that there is some concentration of expertise here in Scotland so that people do not have to travel south of the border, as happens at the moment.

I can see you looking at me and at the clock, Presiding Officer, so I shall conclude my remarks by asking for specific attention to be given to the impact the condition has on young people. I am pleased with the report of the independent expert group in that regard, but it is worth reiterating that point. I pay particular tribute to Alan Stroud, one of my constituents. Many members will be familiar with him because of the effort he made to give evidence to the Public Petitions Committee a few months ago. He and his family have repeatedly raised the issue with me as their constituency member. Hearing about their experience has had an impact on members and I hope that this debate tells Alan and others like him that we have been listening and that we will act.