Petition PE398, from Helen McDade and others, calls on the Scottish Parliament to urge the Scottish Executive to carry out a strategic needs review assessment on ME. We have discussed the petition many times before, and we have with us Alex Fergusson from the cross-party group in the Scottish Parliament on ME.Welcome to the committee, Alex.
Official Report · Committee
Petitions
Myalgic Encephalomyelitis (PE398)
Speakers
Choose an MSP to read only their contributions- Janis Hughes Lab 13
- Alex Fergusson Con 7
- Duncan McNeil Lab 4
- David Davidson Con 3
- Dr Jean Turner Ind 2
- Robin Harper Green 1
- Shona Robison SNP 1
- Helen Eadie Lab 1
- Mike Rumbles LD 1
The record
33 contributionsThank you, convener.
We have gathered a lot of information on the petition over the course of time. One action that came out of our work on the petition and the work of the cross-party group on ME was the Executive's commissioning of a short-life working group to consider how ME is treated in Scotland. The issue that we must discuss today relates to the Executive's point that it does not directly provide facilities for the management of chronic illness in communities and that that is up to the health boards. The health boards have been asked to report to the Scottish Executive on the facilities that they have put in place and those reports are expected at the beginning of this year. One option for us is to await the further information from the health boards on what they have put in place as a result of the findings of the short-life working group.
I have great sympathy with the idea of carrying out an inquiry on the issue in time, but we cannot move to that stage until we get a progress report from the health boards. Perhaps the committee could write to each health board to ask for direct submissions on their plans and how far they have got with delivery against a published time scale. We should also ask whether they have any comments about the support that they expect to receive from the Scottish Executive.
Before I say anything, perhaps I should declare what I hope are reasonably well-known interests: I convene the cross-party group in the Scottish Parliament on ME and I have a child who is affected by the disease.Further to David Davidson's point, when I took over the convenership of the cross-party group, I wrote to every health board to ask for an update on their progress. We are concerned that, because the health boards have taken different approaches, that may lead to a piecemeal approach to the problem. I understand the desire of the Executive and members to wait to see the health boards' reports, but I urge the committee as strongly as possible that that should be the least course of action that it should take. Until the committee receives the reports, it should resist any temptation to bury the issue.The approach in Scotland is different from that south of the border, which is not necessarily a bad thing, but I worry about it in this instance. South of the border, a national strategy is being put in place, which is backed up by £8.6 million of ring-fenced funding, to produce a more comprehensive, national approach rather than a board-by-board one. The issue is of great concern. I believe that, ultimately, what is happening south of the border will lend more weight to the petition's request for the establishment of a clinical centre of excellence—which does not necessarily mean an expensive building—for treatment of and clinical research into ME. I urge the committee to keep the issue alive for the time being if possible.
I restrict my comments simply to stating my strong support for Alex Fergusson's request.
Sorry, I failed to welcome Robin Harper MSP, who has again come along to support the petition.
Given that we are already in 2004, perhaps we should write to the Executive to remind it of the commitment that it made and to ask whether the reports will be received in a few days or a couple of weeks. We could contact boards directly, but it would be useful to have a starting point from which to do so. If we are to receive the reports in a couple of weeks, it may be worth holding off to allow us to consider the information. That would give us something to go on and would allow us to write to the boards with an informed request for more information. However, we will not be able to decide until we know when we will get the reports. If there is to be a delay in receiving that information, we should write directly to the health boards.
Would it be normal to write directly to health boards rather than seek information from the Executive?
It is open to us to write directly to health boards if we wish to do so. There is merit in Shona Robison's proposal that we write to the Executive to seek confirmation of when it expects to receive the responses. On receipt of an answer from the Executive, we can reconsider the issue and decide what to do. If there is a long time lapse, perhaps we should consider further what to do. However, I favour Shona Robison's proposal, which is that we write to the Executive to ask when it expects to receive the health boards' responses.
I agree with that proposal. I declare an interest because I, too, am a member of the cross-party group on ME. I know how hard Alex Fergusson and other colleagues in the group have worked on the issue, which is to their credit. I declare another, personal, interest because my father-in-law suffers from ME.Given what Alex Fergusson said, perhaps we, too, can ask for a copy of the strategy paper that was agreed in England. We should always want to copy best practice from elsewhere. I recall that the chief medical officer for Scotland once spoke on this issue to the cross-party group. He was tuned into what was happening at UK level. The issue could be progressed if we obtained copies of the strategy in England. We could consider that strategy and perhaps commend it to the minister.
We can request a copy of that strategy paper when we write to the Executive.
I agree with everything that has been said, but I want us to keep it in mind that ME is a difficult condition to diagnose. However, early diagnosis would not only ensure that the best treatment was provided but probably be more cost-effective. A heap of research is needed to find out what is going on in ME. If there were another condition that affected as many people as ME does, we would be trying to find out the cause. Many doctors do not understand ME and many people who have relatives of all ages who have ME do not understand it. Half of the time we are working in the dark. Many doctors are afraid to say that they believe that ME exists. Other doctors know fine well that, whatever it is, the condition exists and affects people's lives. ME takes people out of schooling and out of work—for example, because they are trying to look after a child with ME. It is the same old story: if people had someone in their family with ME or knew someone who had ME, they would be more sympathetic. As is true with other conditions that will probably be discussed during the meeting, more research is urgently required to find out what is going on. It is important to urge the Executive to keep the issue on the cooker.
I agree strongly with what Jean Turner has just said. I want to put on the record that a well-received report last year estimated that there are 20,000 ME sufferers in Scotland, which costs the country £300 million a year in lost productivity. That is a substantial amount of money, which could be saved. Jean Turner is right about the research. I disagree with her in only one way. Since the report of the chief medical officer in England was published last year, ME is no longer defined as a condition. ME is now a recognised disease, but it suffers from an enormous lack of research funding. That is one of the matters to which I hope the Health Committee will return once the health boards have reported.
I accept what Shona Robison said about trying to get what we can from the Executive. However, I am in only partial agreement with her as I think that to save time we could also ask health boards to copy us in when they write to the Executive. The letter dated 17 December that Trevor Lodge sent to the committee says:"the committee asked for a timescale for the implementation of the report's recommendations. The Executive did not set a timescale",and the letter goes on and on. I would like to get our information firmed up to ensure that we can consider the petition again at our next meeting on petitions in three months' time.
The Executive might already have sought the progress reports. We can write to it and ask for copies of the responses that it gets from health boards as soon as they arrive, rather than ask health boards to send copies to us, because they might already have started sending their responses to the Executive.
Do you have faith in the postal system?
I am just trying to cover all bases.
Members have spoken warmly about the petition and there is obvious support for it around the table. However, we must be careful when we consider one condition or disease in isolation from everything else in the health service. I would not like us to be misleading or to give false expectations to the petitioners on the condition/disease of ME—I would not like that to be done in my name, anyway. When we examine issues in isolation, we tend to do that. There are many people with conditions and diseases who will petition us for special treatment. We should always try to keep matters in perspective. I am again pouring cold water on the petition.
I will take advantage of the presence of the convener of the cross-party group to ask him to comment on the estimate in the letter from Trevor Lodge of the Scottish Executive that"10,000 people in Scotland were likely to be affected by ME."Do you or the cross-party group have any thoughts on the Executive's estimate?
May I respond to that question, convener?
Yes.
Because I was once a convener, I cannot stand people speaking without permission. Mike Rumbles was always one of the best of them.This is the first time that I have seen the letter from Trevor Lodge. I have not seen it before and would like to read it before I comment. There is a clear difference of opinion on the matter. Estimates of this kind are to some extent subjective, partly because of the difficulties of diagnosing the disease, which Jean Turner and others have mentioned. There is room to differ. I see what Duncan McNeil is getting at, but there is no doubt that this is a serious condition.Jean Turner made a very good point. When the petition was submitted, I remember saying—to general agreement—that 20 years ago most people had heard of ME, or yuppie flu as it was known in those days. Now almost everyone knows someone who is affected by it. That is a serious trend in the wrong direction that needs to be addressed.
Your point is understandable. You have now seen the letter, which I am sure the cross-party group will discuss.
I want to make a point about the papers, which Alex Fergusson has told us he has not seen. The responses from the petitioner and the Executive are attached. No written response has been received from the cross-party group on ME. For the sake of the group's integrity, can you indicate whether it was asked about this issue and whether it has received the papers and correspondence that we have received? If not, it should receive them in the future, so that it is not placed in the situation of not having a paper that arrives in front of us. It has been suggested that there are other petitions to which the relevant cross-party group has not responded. I am not apportioning blame, but we need to clear up the matter.
The intention is that when we seek further information about an on-going petition from a cross-party group we should let it see the correspondence that we have received. We may have received this letter after we asked the cross-party group to give evidence to us. I notice that the letter is dated 17 December. Our decision to continue the petition was made prior to that. That probably explains what has happened. However, I am sure that the cross-party group will welcome the opportunity to discuss the correspondence.
Absolutely. I hope that the committee will accept the submission from Helen McDade, who is no longer the secretary to the cross-party group and who has made her submission as an individual. On behalf of the cross-party group, I support the submission 100 per cent.
Duncan McNeil is right to say that the Health Committee faces a number of difficult decisions because of the very large number of petitions that it receives, perhaps unlike other committees of the Parliament. From the discussion around the table, you have heard that there is support for the petition and we will continue to discuss this issue. However, we must bear it in mind that we have difficult decisions to make.
I want to respond to the point that Duncan McNeil has made. It is true that at times we are bombarded and snowed under, but if thousands of people suffer from this and other conditions, we cannot cherry pick. If conditions exist in Scotland, we must carry out research into them and apply science and research to find out what causes them and how we should treat them. Conditions such as ME/chronic fatigue syndrome, multiple sclerosis and autism exist in our society and we cannot ignore them. If they are on the increase and insufficient research is being carried out into them, it is up to the Health Committee to support the groups affected.
The benefit of the establishment of the Scottish Parliament is demonstrated by the fact that we are having this discussion today. We have influenced and challenged the Executive's position on this matter. We should put the matter in perspective. If we were sitting here today deciding whether £8 million should go into cancer services in the west of Scotland or into a research project on the condition, it would be a completely different debate. My point is that we are dealing with the petitions in isolation. Of course we have sympathy with petitioners, and we do not dismiss them lightly, but to suggest that we have solutions and that we can call for money to deal with these petitions would be wrong, and our credibility would suffer as a result.
We are moving on to a more general discussion now. It is a tribute to the work of the cross-party group and the previous committee that we had the short-life action group, and that we and the Executive did a lot of work on the subject. I assume that there is no dissent, and that we agree to continue with the petition in the meantime, and take the action that we previously agreed.Members indicated agreement.
Thank you for your indulgence, convener. I point out that it may be a single petition, but it is on behalf of somewhere between 10,000 and 20,000 people.
I thank you and Robin Harper for your attendance.
In this meeting
Everything on 13 Jan 2004 →- Scottish Parliament Health Committee Tuesday 13 January 2004 (Afternoon) Committee business · 1
- Item in Private Procedure · 6
- Petitions Petitions · 1
- Petitions Petitions · 6
- Petitions Petitions · 13
- Petitions Petitions · 4
- Petitions Petitions · 33
- Petitions Petitions · 8
- Petitions Petitions · 24
- Petitions Petitions · 3
- Petitions Petitions · 8
- Petitions Petitions · 7
- Petitions Petitions · 3
- Petitions Petitions · 8
- Petitions Petitions · 11
- Petitions Petitions · 1
- Budget Process Committee business · 12
- Work Programme Procedure · 85
The type of each item (debate, statement, questions, members’ business and so on) and the times shown are worked out by this site from headings, the chair’s opening words and the Official Report’s running timestamps. They are not the Parliament’s own classification. Text: the Scottish Parliament Official Report.