Myalgic Encephalomyelitis

Part of the debate – in the Scottish Parliament at 5:46 pm on 23rd January 2002.

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Photo of John McAllion John McAllion Labour 5:46 pm, 23rd January 2002

I turn to the document "Our National Health: A plan for action, a plan for change". It is a kind of blueprint for the first-ever devolved NHS in Scotland. It contains a vision of a different kind of NHS and is full of fine phrases. For example, it states:

"We must build an NHS which listens better to patients and responds more effectively to their needs."

It calls for an NHS that puts the experience of patients at the heart of service changes and

"gives patients a stronger voice."

No member would disagree with that vision for the NHS, yet it mocks the reality of the experience of ME sufferers in their daily contact with the NHS. They are not a fringe minority of people but a substantial part of Scottish society.

The motion talks about the condition

"growing in incidence among both adults and children".

We do not know how many sufferers there are in Scotland because nobody in authority has so far bothered to try to find out. All that we have to go on are the surveys that have been conducted by ME groups. We are not completely in the dark. Those surveys estimate that there are around 15,000 Scottish sufferers, of whom 2,000 are children. All of them have had experiences of the NHS that are described in the CMO's report as "largely negative". Indeed, their experience of the NHS is that it has left them feeling isolated, misunderstood and, worst of all, ignored by those in authority who do not know the real nature of the illness. That is something that we have to change quickly.

I was impressed by Susan Deacon's speech, not least because of who she is and the insight that she has into the way in which the health service works in Scotland in the 21st century. I was delighted to hear her say that we are listening now because, not so long ago, lots of people in the NHS were not listening to the experience of the sufferers. I was also delighted by her plea for action. However, I do not want anyone to get confused in this debate between the call for a national centre of excellence and the call for local services provided by local NHS boards. Those two calls are not mutually exclusive but complementary—one should not be used to argue against the other. Both initiatives need to happen, which is what the campaign aims to achieve.

That and many of the other aims of the group—for example, the research that Alex Fergusson mentioned, the establishment of a needs-assessment programme for epidemiology studies, the challenging of the World Health Organisation's classification of ME as a psychiatric condition and the resolution of the benefits issue that has been referred to by a few speakers—are not going to go away. The cross-party group in the Scottish Parliament on ME will not let them. We are going to continue to address those issues and demand action from the Executive on them.

ME sufferers have been badly neglected not only by the NHS in the UK but by the Scottish NHS. We need action from the minister. He needs to tell us what kinds of services will be provided in the future and the ways in which the needs of this group are going to be addressed as they have not been addressed in the past.