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Chamber and committees

Health Committee, 13 Jan 2004

Meeting date: Tuesday, January 13, 2004


Contents


Petitions

The Deputy Convener:

Item 2 is the consideration of petitions. Members will see that we have one new petition, PE609, which is highlighted in bold on the committee papers. The other petitions that we will consider today are on-going. We will go through them in the order in which they appear in annex A to the papers.


Epilepsy Service Provision (PE247)

The Deputy Convener:

Petition PE247 is from Epilepsy Action Scotland and it has been on-going for some time. We decided to take advice from Epilepsy Scotland about the progress that is being made, and it has submitted a letter to tell us its views on the work that the Executive has done so far on epilepsy. Do members have comments on the action that we could take on the petition and on how we should move forward?

I suggest that we write to the Executive and enclose a copy of the letter from Epilepsy Scotland. We should ask the Executive to comment on it.

The Deputy Convener:

Epilepsy Scotland acknowledges in its letter that progress has been made on the treatment of epilepsy. It indicates that it is pleased with some of the things that have been done. It would be useful to send its letter to the Executive and to seek further information.

I agree with that, but we should emphasise the role of epilepsy nurses and the fact that they are not very well spread out across Scotland.

Is it agreed that we should ask for the Executive's comments on that?

Members indicated agreement.

I add that it is urgent to make an early diagnosis of epilepsy.


Organ Retention (PE370)

The Deputy Convener:

We move on to petition 370 from Lydia Reid, on behalf of the Guardian Angels, on organ retention following post-mortem examinations. The work that has been done on the petition involved writing to the Executive and we have its response. Members are invited to consider how we should move forward. The Executive response detailed several developments in organ retention following post-mortem examinations and the current Executive consultation on the new proposals. Does the committee want to take the petition further or is it happy with the Executive's work on the issue?

Mr Duncan McNeil (Greenock and Inverclyde) (Lab):

No one wants to be the big bad wolf. There is always a silence around the table when we reach the conclusion that we do not want to take any further action on a petition, so I will say it. The petition has been moved on and it has been going for some time.

Mike Rumbles:

Duncan McNeil is being brave and I will join him in that. We must take a decision—we keep getting all these petitions in, but we are duty-bound to recognise when a petition has pushed the Executive to take action in a certain direction and action is being achieved. If we keep the petition open, we will raise hopes that we will return to it. Duncan McNeil is right; we should note the petition and close it.

Dr Turner:

I agree. It seems that the Executive has made progress on trying to get things right. It may be that we need to be sure that it has done so. Perhaps we should get some feedback on that at a later date. We should write to the petitioner to say that we note the progress that has been made and hope that it continues.

If we decide today to end the petition, we will write to the petitioner. If you wish, we could ask the Executive to keep us updated on the work that it is doing.

That would be good, because we want to be sure that the good ideas that the Executive is suggesting are put into practice.

Helen Eadie:

I support other members' views on that. It is important to put on record and say to the petitioners that the Scottish Executive has published a consultation paper. The proposals in that paper are encouraging, because the Executive talks about

"• repealing the 1961 Act and replace it with completely new legislation;

• using the concept of ‘authorisation' to recognise the control which parents should have over what happens to their children after death;

• clarifying who can authorise a hospital post-mortem examination on an adult;

• creating penalties for failing to obtain authorisation, or failing to abide by the terms of the authorisation given."

I hope that the fact that the consultation paper is on the Executive's website and is available through the Scottish Parliament information centre will go a long way to meeting the public's concerns on the issue, which has hit every MSP's postbag at one time or another. It has been an extremely distressing situation for everyone, not least the families concerned.

The Deputy Convener:

We must be clear that the petition calls for a public inquiry but that the position that we are taking is that we will tell the petitioners about proposed legislation and work that the Executive is doing. I ask members to bear that in mind when the committee makes its final decision.

Mike Rumbles:

I was going to add that point. It is not within our power to call a public inquiry, but we could call on the Scottish Executive to initiate one. I am satisfied with the Executive's response on the issue, and I think that it would be appropriate to close consideration of the petition. When the Executive publishes its draft legislation, the petitioners can influence it during its passage through the Parliament.

It would be courteous to let the petitioners know the legislative timetable once it is announced and to remind them that they can submit evidence as part of the Parliament's consideration of the bill on the matter.

Yes. We could cover that by asking the Executive to keep us informed of the timetable, and the clerks could forward that information to the petitioners.

We should put an assurance that we will do that in the letter to the petitioners.

Is it agreed that we take no further action on the petition, write to the petitioners telling them that and write to the Executive asking it to keep us updated on progress on the issue?

Members indicated agreement.


Chronic Pain Management (PE374)

The Deputy Convener:

Petition PE374, by Dr Steve Gilbert, calls on the Scottish Parliament to act urgently to redress the underfunding of chronic pain management services. The petition has been with the committee since the previous parliamentary session. The Executive response tells us that a report of Professor James McEwen's review of chronic pain services will be published. One option that we have is to await the publication of that report before deciding how to proceed further.

That is exactly what we should do. We should wait to see what the report has to say.

I support that.

Are we agreed to await the report's publication and reconsider the petition at a later date?

Members indicated agreement.


Myalgic Encephalomyelitis (PE398)

The Deputy Convener:

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.

Thank you, convener.

The Deputy 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.

Mr Davidson:

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.

Alex Fergusson:

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.

Shona Robison:

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?

The Deputy Convener:

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.

Helen Eadie:

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.

Dr Turner:

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.

Alex Fergusson:

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.

Mr Davidson:

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 Deputy Convener:

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.

Mr McNeil:

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.

Mike Rumbles:

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.

Alex Fergusson:

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.

Mr McNeil:

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 Deputy Convener:

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.

Alex Fergusson:

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.

The Deputy Convener:

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.

Dr Turner:

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.

Mr McNeil:

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.

The Deputy Convener:

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.


Deceased Persons <br />(Law and Code of Practice) (PE406)

The Deputy Convener:

Petition PE406, from Margaret Doig, calls on the Scottish Parliament to redress the omissions concerning the current law and code of practice that govern post-mortem examination of bodies where the deceased has no surviving relatives.

Members will see from their papers that a great deal of correspondence is connected with the petition. The Health and Community Care Committee approached every health board in Scotland to seek information on their policies on post-mortem examinations. If members have read the papers, they will know that there is a fair degree of uniformity among the protocols, most of which are along the lines of the guidelines that are issued by the Royal College of Pathologists and NHS Quality Improvement Scotland.

It is up to the committee to decide how to proceed with the petition.

Should we not send along the petition as part of the Executive's consultation on post-mortem examination, and await the results of that consultation? We should take the middle two actions of the four that are proposed in the clerks' paper.

Shona Robison:

I acknowledge that there was uniformity in the responses that the committee received, but that does not necessarily mean that there has been uniformity in practice. That is why Margaret Doig's concerns have arisen, and I commend her on the power of work that she has done on the issue.

I support the first recommendation in the paper, on introducing a standardised system. However, it could be argued that that may end up being a recommendation anyway. We could implement elements of the other three recommendations. We could send the information that has been put together by Margaret Doig to the consultation, if she has not already done so, and ensure that the points are taken on board in the consideration of any new legislation. We could do that to reassure Margaret Doig that the Executive is in full possession of the information that she has provided.

Mr Davidson:

I support what Shona Robison said. We cannot drop the first recommendation that there should be a standardised system. I hope that that will come out of any new legislation. Should we write to one or other of the justice committees, if not both of them, to find out whether they have taken a view? They will have to deal with a good chunk of that legislation and it would be good to establish relationships with those committees, so that we could shadow each other's work. The justice committees will come at the issue from a slightly different point of view; I am not saying that they are not the sensitive, caring creatures that we are, but there will be different responsibilities within the parliamentary process. We should ensure that the papers go to those committees, to be considered as part of their deliberations.

Dr Turner:

The important thing is that the petitioner wanted people without relatives to make decisions about post-mortems well before, for example, the kind of deathbed decision that might be made by relatives of other people. She wanted to make it clear that, if a person with no relatives puts the decision in writing in their will, that decision should be adhered to and no one should be able to countermand it. After reading through all the papers, I think that there is a slight possibility that a medical officer or consultant in charge could decide that, if the patient had no real relatives and if they could not get in touch with the patient's executor, they could go ahead with the post-mortem. I have read this lady's very well-researched information carefully and I believe that that is what she wants to make clear.

The issue is different for children and I think—I hope—that that matter is being dealt with better. However, as far as adults are concerned, the petitioner wants to make it clear that a person's decision not to have a post-mortem should be written in tablets of stone and no one should be able to change it. That is best done up front instead of when someone is either dying or dead, and we should try to write that into our report on the petition. Perhaps David Davidson is right to say that it is a matter for one of the justice committees.

Mr Davidson:

That is exactly why I said that we should take the matter to the Parliament's justice committees rather than simply reach a conclusion ourselves. Even though we might have sympathy with the view that is expressed in the petition, this sort of request would very much be an issue for the justice committees if it meant a change in the way that wills are processed.

That is a good point.

The Deputy Convener:

Members seem to be suggesting that we await publication of the outcome of the consultation before we consider whether to progress the first suggested action in the paper, which is to recommend to the Executive that there should be a standardised system for expressing wishes for the treatment of the body after death. I know from Ms Doig's correspondence that she has written directly to the minister on this matter, so I assume that the Executive has a deal of these papers. That said, it would not do any harm to send all the correspondence to the Executive and, at the same time, to ask it about the timetable for the consultation. We should also send the correspondence to the justice committees with a view to discussing with them how we might move forward on this issue. Are members agreed?

Members indicated agreement.


Autistic Spectrum Disorder (PE452)<br />Psychiatric Services (PE538)


Autism (Treatment) (PE577)

The Deputy Convener:

Petition PE452, in the name of James Mackie, is grouped with PE538, also in the name of James Mackie, and PE577, in the name of Steve Law. All the petitions call on the Scottish Parliament to investigate a range of issues relating to the methods of diagnosis and treatment of adults with autistic spectrum disorder in psychiatric hospitals in Scotland.

We wrote to the Executive in December and have now received its response, which members will find among their papers. The response mentions that the Executive is currently commissioning certain reports, and one of the options that is open to us is to await the publication of those reports. Do members have any comments?

Mr Davidson:

Although the petitions have been grouped together, they are all slightly different. For example, PE577, in the name of Steve Law, is not about mental health services but about trying to get autism recognised as a medical condition. As far as developing those services is concerned, I return to a point that Dr Turner made about the need for research. It appears that genetic inheritance has formed the basis of some of the research when, in fact, much of this matter comes down to immunology and the body's systems. As there are variations across the petitions, I do not want us simply to say yes or no to all three at the same time. We need to consider each of them separately.

Shona Robison:

I support David Davidson's comments. I wonder whether we could probe with the Executive one of the issues about research that it raises in its response. For example, the Executive says that

"the Chief Scientist Office in Scotland is contributing £0.25 million"

to research.

I would like to know more about that research—what exactly it is setting out to do, the time scales, and so on. In addition, I would like more information about other bids for research that have been received by the chief scientist office, such as how many bids have been received, how many have been approved for funding and what the criteria have been for making those decisions. I understand that the three reports—the Public Health Institute of Scotland report, the measles, mumps and rubella expert group report and the Medical Research Council expert group report—all called for more research into autism. Clearly, there is a push in the same direction. It would be interesting to know what other bids the chief scientist office has received. Has it received enough bids? Is it looking for more bids in specific areas of research? If so, what is it doing to encourage bids? How many of those bids have been funded and what are the criteria?

Helen Eadie:

It is good to see how seriously the Scottish Executive is taking this matter in spending £250,000 on the research and in planning to take a series of actions—such as the national diagnosis study day in March—along with the actions of the social services departments and the health boards. A number of actions are suggested in the minister's letter, and that is a positive response. I have no objection to what has been suggested by David Davidson and Shona Robison, but it would be helpful for us to see the final report of the consultation that is mentioned in the Executive's response. We should continue to ask probing questions on the issues.

Dr Turner:

It is very costly to look after an autistic child. It is costly to the health service, in specialised treatments, and it is costly to the family. It is, therefore, a huge cost to the country to have people suffering from such conditions. Autism could be linked to other conditions; we do not know enough about it, but it definitely exists and its incidence is increasing tremendously. What Shona Robison said about the research is important.

I cannot emphasise enough how important it is that we spend money on research. The money that is going into the research is probably a drop in the ocean compared with the cost to the families, the nation and the NHS of looking after children with autism. It would be interesting to see the cost of research to the MRC and other research councils, relative to costs in other research areas, and to know how many people are being encouraged to produce research. We must provide the funding to encourage people to do the work if we want unbiased and good research.

Mr Davidson:

In relation to PE577, many of us have had meetings with Action Against Autism, and have spoken with the charity about some of the scientific support that it has received. I wonder whether we could write to Action Against Autism, asking for information about the cost of autism to the nation—as Jean Turner put it—and, specifically, about what it means by an "autism specific medical facility". I got the impression that it was talking about a joint centre that would not only deal with diagnosis, but do a lot of research. I do not think that that is how it appears in our briefing paper, but I think that that is what was intended. We might write to the charity, asking for clarification and expansion on that point, and defer consideration of the petition until we next deal with petitions.

Mike Rumbles:

On the point about medical research into autism, I wonder whether the convener would write to the Medical Research Council. I would like to know in a bit more detail what the £2.75 million is being spent on. Where are the awards going? What research is being done? Perhaps we can get that information from the Medical Research Council.

Shona Robison:

In relation to PE474, I meant to say earlier that I seem to remember that the fairly open response to Sarah Boyack's question about research into toxin levels at last week's question time was that the issue might be considered. The petitioners seem to be asking something similar. If the Executive is considering supporting research into toxin levels more generally, perhaps work could be done specifically on autism. We could ask the Executive about that.

Petition PE474 is being considered on its own, because it is not related specifically to autism in that respect.

My apologies.

That is okay. We will come to it next.

Helen Eadie:

I have no problem with our writing to the Medical Research Council, but it would be helpful to ask for comparators around what is spent on autism and what other research is going on. This comes back to the point that Duncan McNeil made: it is all very well to either lament or applaud the amount of money that is being spent on research, but it is easier to do so if we know what is being spent on cancer, heart disease and so on, as that allows us to make a judgment. In Cowdenbeath in my constituency, we have an autism centre, of which members might be aware, which serves a wider area than just my constituency.

Helen Eadie makes a useful point. I am interested not so much in the amount of money that is being spent, but in the research that is being done.

It has been suggested that we write to the Executive asking for more information about the money that is being spent on research. It has also been suggested that we write to the MRC about research. Do we want to do both?

Yes.

We will write to the Executive seeking further information about the bids that it has received for research, which is the point that it was asked to answer. We will also write to the MRC to ask specifically about research into autism.

That all arises out of correspondence from the Executive; it does not relate to the petition.

It does not relate specifically to the petition.

We have meandered away from the petition.

The point about research is covered; it relates to some of the petitions, but not to all of them.

Mr Davidson:

In relation to PE577, I asked whether we could write to Action Against Autism to seek clarification of what it thought the centre would do and whether it would be a research or diagnostic centre. I also asked whether we could get information, which might have been collected by now, on the cost of autism to the nation, which relates to the point that Jean Turner made.

The note from the clerk says that PE577 is calling for the establishment of an "autism specific medical treatment facility". It does not say anything about research.

Mike Rumbles:

The note says that PE452 calls

"for the Scottish Parliament to investigate a range of issues relating to the methods of diagnosis and treatment of adults with autistic spectrum disorder (ASD)".

It is important to know what research is going on, so we can address the petitions.

We will cover that by writing to the Executive and the MRC. Do we agree to proceed in that way?

Members indicated agreement.


Heavy Metal Poisoning (PE474)

The Deputy Convener:

Petition PE474, which is from James Mackie, concerns heavy metal poisoning. Shona Robison has made comments on the petition. Do members have any other comments to add? Following our most recent correspondence, we have received a response from the Executive, which makes it clear that the Executive has done some work, but that there are no plans to act on the issues that arose specifically from the petition.

Mr Davidson:

Forgive me, but I am looking at the Official Report of our meeting on 7 October and I know that we did not get an answer to one of the points that had been raised. I have found the reference. When we last discussed the petition, we said that the Executive had not come back with enough information on cadmium and the other substances that cause certain types of dysfunction. I am thinking about issues around tin and antimony. It would be helpful if the Executive, through its science arm, could let us know what further information it holds on that area.

Okay. We will write to the Executive to seek more detailed information on the issue. Is that agreed?

Members indicated agreement.


Aphasia (PE475)

The Deputy Convener:

Petition PE475 was submitted by Mrs Cecilia Yardley on behalf of Speakability. The petitioner calls on the Scottish Parliament to take the necessary steps to recognise aphasia as a life-disabling condition; to develop and produce accurate measures to recognise, treat and support aphasic people; to improve the quality of service that is available to aphasia sufferers; and to support service development that is based on accurate measures of need and performance.

On 7 October, we agreed to write to the Executive. Do members have comments to make on the Executive's response?

Mr Davidson:

The letter from Malcolm Chisholm refers to

"scope for making use of Speech and Language Therapists".

We need to find out what provision the Executive seeks to make for the future. Therapists seem to be in short supply; in some parts of the country, it is almost impossible to get access to that service.

We have the opportunity to ask the petitioner to comment on the Executive's response. Would that be a sensible way to go forward?

Dr Turner:

The Executive suggests that this service should be a multidisciplinary treatment. That is good, but, given the shortage of all the various therapists, it might be difficult for such a service to be provided. It is not possible to cart people from 20 or 50 miles away and bring them into centres. Provision has to be made for people to access the services, possibly even in their own homes. There is a hidden cost to providing the services, because people are taken to centres in taxis and ambulances. It would be more cost-effective for there to be more specialist therapists. The country's NHS costs would be cut if people were made more independent. I make a plea for that to happen. It is difficult to envisage the multidisciplinary approach when the therapists are not in place.

Do we have information about the availability of speech and language therapists?

No, but I was about to say—

I think that there was a recent members' business debate on the subject. I suspect that the Executive will have that information to hand.

The Deputy Convener:

I was going to propose that, in our letter to the Executive, we ask it to respond to what it said about the multidisciplinary approach in the context of the number of therapists who are available. We will ask the Executive to give us an idea of the numbers. We will also ask the petitioner to comment on the Executive's response. Is that agreed?

Members indicated agreement.


Digital Hearing Aids (PE502)

The Deputy Convener:

Petition PE502 was submitted by Fiona Stewart on behalf of the Royal National Institute for Deaf People Scotland. The petitioner calls on the Scottish Parliament to urge the Scottish Executive to show firm commitment to the provision of digital hearing aids and to modernise audiology services in Scotland.

Again, we wrote to the petitioner on 7 October to seek her views on some of the issues around audiology services. We have received a response from the petitioner. We have the option of seeking further advice from the Executive on whether it wants to take up any of the suggestions that are made in the petitioner's letter.

Mr Davidson:

The other thing that we should be aware of when we write to the Executive—and I would support our doing that—is that, in many parts of Scotland, waiting times for accessing the service make matters quite difficult. The letters that I have received from the Executive indicate that that is the responsibility of health boards. I wonder whether the minister might manage to provide us with some information on what improvements are being made across the country, rather than send a standard letter that says, "This information is not held centrally." The issue is vital.

Kate Maclean:

I tend to support the first option in our paper:

"To recommend that the Executive shows a commitment to an Early Year Support Programme".

It is unfortunate that the Executive has not committed itself to hearing checks for newborn babies.

Depending on their family backgrounds, children are often at school by the time that their hearing problems are discovered, and there is evidence that that can seriously affect their chances in the future. If parents do not find out that their children have a hearing problem until they are six, seven or eight, the children will by then have missed out on opportunities that they will not be able to get again. I would therefore support the first suggestion, and I would like to know why the Scottish Executive does not favour hearing tests for newborns when there is so much evidence to support the provision of such a service.

Helen Eadie:

I support what Kate Maclean is saying. I am looking at the letter from RNID Scotland, which states:

"RNID Scotland remains concerned that the hearing checks on newborn babies are not included in the modernisation programme and would like to ensure that this service is supported, along with joined-up approach between Education and Health to ensure an Early Year Support Programme".

As Kate Maclean said, that is very important.

I think that the Parliament and the Executive have moved the petition on very well. I remember numerous debates and questions in Parliament on the subject, and totting up all the money that is available must now give a total of between £12 million and £15 million, which is encouraging. It certainly goes a long way towards addressing a serious problem that has been represented in all members' mailbags and constituency surgery cases. That is an example of good progress and good work by the Executive.

Mike Rumbles:

I raised the issue in a members' business debate in the second year of the Parliament. It is an extremely important issue, on which I have worked closely with RNID Scotland. What the Executive has done is to be applauded; an injection of £20 million over the next few years is a real boost to the service. It is only right and proper that RNID Scotland wants to ensure that the Health Committee keeps a watching brief on the Executive's programme; that is also to be applauded. The fact that the Scottish Executive has committed to that programme is great news, but parliamentarians must ensure that it delivers what we expect it to deliver.

Dr Turner:

I go along with the first recommendation. It is important to be sure that young children have good hearing, otherwise their speech may be impaired. If children do not hear properly, they do not speak properly and if that problem is missed until they get to school, they do not learn properly.

Some children may also have eyesight problems, and there is research to prove that, if someone's peripheral vision is not good, they do not learn very well either. There is a group of people who have hearing and eyesight problems. Another cost-effective initiative would be the testing of very young children through their early years in school to ensure that their hearing and eyesight are perfect so that they can learn. It seems that it would not cost too much to do that; in fact, it would be a cost-saving device. I therefore agree with Kate Maclean that the first recommendation is very important.

The Deputy Convener:

Are we agreed, then, that we should send the response that we have received from RNID Scotland to the Executive and that we should ask the Executive to comment on the early-years support programme and on the roll-out of digital hearing aids across Scotland?

Members indicated agreement.


Mental Welfare (Complaints Procedure) (PE537)

The Deputy Convener:

Petition PE537, which is from Alexander Mitchell, calls on the Scottish Parliament to investigate the performance of the Mental Welfare Commission and the health ombudsman in handling complaints and to make recommendations for improvements to ensure that complaints are dealt with thoroughly, openly and fairly.

On 27 October, we wrote to the Scottish public services ombudsman for further information on any measures that she was considering. Her response is given in the papers before us. Have members any comments on the response?

Mr Davidson:

I would go with bullet point 1 in the clerk's paper, which suggests that we await the views of the petitioner on the response that we have received.

I find it surprising that the cross-party group on mental health, of which I am a member, has not responded. The group has been pretty proactive in taking up any offers of influence that it has received. Perhaps it might be helpful to send a note to Adam Ingram.

The Deputy Convener:

I am advised that that is probably due to timing. As we did not receive the response from the ombudsman until 22 December, the cross-party group on mental health would not have received it until the beginning of the year. I suspect that the lack of response is not an oversight but has arisen because the group has not yet been able to consider the response.

Is it agreed that we should await the views of the petitioner, and those of the cross-party group on mental health, on the ombudsman's response?

Members indicated agreement.


Multiple Sclerosis (Respite Homes) (PE572)

The Deputy Convener:

Petition PE572, which is from Patrick and Jennifer Woods, calls on the Scottish Parliament to investigate whether there is within Scotland adequate provision of homes that have no upper age limit and which provide respite care for sufferers of multiple sclerosis and other disabling conditions.

On 7 October, we wrote to the Scottish Commission for the Regulation of Care and to the Convention of Scottish Local Authorities for further information. The response from the care commission is attached. COSLA's response states that COSLA does not hold the information that we requested, but some information on each local authority is provided thereafter.

Have members any comments?

Shona Robison:

The list of local authorities is not comprehensive and seems to contain only those from which COSLA managed to get information. We do not yet have the full picture on the Scotland-wide situation on respite care for people with MS, so perhaps we need to consider other ways of doing that.

The care commission said that it will be able to give us the information only once its data collection systems are more comprehensively established and contain the information, so we need to consider other ways of getting the information. I suppose that going directly to each local authority is the most obvious way to do that. To do the petition justice, we need to get the Scotland-wide picture; we have only part of the picture at the moment.

The Deputy Convener:

I do not disagree with that but, as Kate Maclean said when we discussed the petition previously, our difficulty is that local authorities are not the only providers of such care. If we cannot get the information from the care commission because it is not far enough advanced as an organisation to have established its data collection, we will still not get the full picture even if we seek information from every local authority. I am not sure how we should deal with that.

Even if the care commission does not have the information, would not each local authority's social work department be likely to have information on providers that they use within their areas?

We might have to make it clear to local authorities that we also want to know about the facilities that they use rather than just those that they run.

Kate Maclean:

I think that we could certainly get more information than we have at the moment. Social work departments would be able to get details about places to which they make referrals. However, because there is such a lack of facilities, local authorities often make referrals outwith their own areas. I do not know who would collate all that information. It might be quite complicated.

I am surprised that the care commission is unable to give us more information. We could make another approach to the care commission to find out whether there is any way we could be provided with the information. The petition has merit, given the lack of respite facilities for adults with specific needs, who are often in nursing homes in which there are people who are frail and suffering from dementia. It might help if we were to approach the care commission and ask local authorities to which establishments they make referrals, although there will always be people who make private arrangements and never have contact with social work departments. I suspect that we will not get 100 per cent of the information, but something would be better than the information that we have at present.

The Deputy Convener:

Is it agreed that we contact local authorities again to ask them for more detailed information, and that we also seek information from the care commission? The commission states that it hopes

"to be able to respond more fully to information requests of this type"

in the future. We may wish to ask when, because it might be the case that we need information of this kind again.

Members indicated agreement.

That is the end of the on-going petitions.


Eating Disorders (Treatment) (PE609)

The Deputy Convener:

We have one new petition to consider, which is PE609, from Mrs Gráinne Smith, on behalf of North East Eating Disorders Support (Scotland) and the Scottish Eating Disorder Interest Group. The petition calls on the Scottish Parliament to ask the Scottish Executive to address, develop and fund specialised treatment of eating disorders.

The Public Petitions Committee considered the petition last March and sought information from the Executive. In December, the Public Petitions Committee agreed to refer the petition to the Health Committee for consideration. With the petition, that committee sent the response that it received from the Scottish Executive, which is fairly detailed and is among members' papers. Are there any comments?

Mr Davidson:

First, I declare an interest as the father of a sufferer of an eating disorder. I know Gráinne Smith very well. I have attended some of her support group's meetings in different parts of the north-east and I assure members that all that she says about her experience is absolutely genuine and valid. She is highly respected.

Yesterday in Edinburgh, Dr Harry Millar from the Royal Cornhill hospital in Aberdeen and Dr Chris Freeman from the Cullen centre here in Edinburgh addressed a conference. As medical professionals who work in the national health service, they called upon the Scottish Executive to develop services within the NHS on a dedicated-treatment basis, not just on an out-patient basis. At the moment, the Huntingdon day hospital in central Scotland, which is a dedicated unit for 16 to 24-year-olds, is not receiving patients from health boards because health board professionals are seeking to develop services within the NHS, and are terrified about what will happen if the money starts to flow out in larger amounts. At the moment, Grampian NHS Board spends £400,000 a year on the private sector where, in some cases, it is actually cheaper to provide treatment. There is a crisis.

Over the past three or four years, I have taken evidence from individuals and groups all over Scotland to the effect that there is difficulty in assessing eating disorders at an early stage, and in accessing dedicated residential care. Usually, by the time people get into such care they are at a life-threatening stage. The other issue is follow-up services in the community once people have partially recovered. That has all been requested not just by Gráinne Smith, but by all the health service professionals. There are not many of them, but they are good dedicated people.

This is an important subject, which cannot be dealt with in a matter of weeks. I ask the committee to support the petition and, when time permits, to take evidence or ask the Scottish Executive about it. Malcolm Chisholm has told me twice in the chamber that the Scottish Executive mental health framework is supportive, but the Executive will do nothing about the problem, because it says that responsibility for that lies with individual health boards. However, every health board to which I have spoken on the subject—most boards in Scotland—says that it does not have the resources or the capability to deal with it. One or two, such as Highland NHS Board and Grampian NHS board, are working together to do something.

Frankly, we must press the minister for a clearer response, if only to the appeals of those who have eating disorders, those who support them and the professionals in the health service who are desperate to make provision.

Helen Eadie:

The Executive's letter makes it clear that we would be pushing at an open door because the Executive is willing to explore ways of examining best practice in other European countries. That prompts me to suggest that we have two possible options. Bearing in mind our work programme, which we will consider later, we can either conduct our own inquiry with a reporter, or we can refer the petition back to the Public Petitions Committee for further consideration. I favour the latter option because I am a member of the Public Petitions Committee and I know that it is keen to undertake such work.

I hope that I am not out of order in suggesting that, because I have just realised that that was the view of the previous convener and committee. I do not know the views of the new convener or the new Public Petitions Committee on the matter. However, the new Public Petitions Committee seems to be keen to undertake work on a petition that would result in a report. If we are to be polite about it, we should ask our clerks to liaise with the Public Petitions Committee's clerks in order to find out from its convener whether that committee would be willing to undertake an inquiry into the petition's concerns.

The Deputy Convener:

I intended to seek your advice on the petition because you are, as you said, a member of the Public Petitions Committee. When the Public Petitions Committee first discussed the petition it agreed to write to the Royal College of Psychiatrists, but that body does not seem to have responded. I believe that the Public Petitions Committee discussed the petition again in December, when it agreed to pass it to the Health Committee. Our work programme means that we can consider a limited number of new inquiries. Would the Public Petitions Committee be able to take the petition further?

Helen Eadie:

We would need to ask that committee. I know that the previous Public Petitions Committee wanted to undertake more detailed work on some petitions. The Conveners Group likes committees to follow protocol, which means that the Health Committee must ensure that the Public Petitions Committee would be happy to take the petition further. It is a question of following agreed procedures and checking that the Public Petitions Committee wants to do that.

Dr Turner:

A paragraph in Trevor Lodge's letter states:

"Most patients suffering from eating disorders will be seen as outpatients within the mental health specialty. No national data is available specifically in relation to patients with a diagnosis of eating disorder."

If we could get information from the Royal College of Psychiatrists we might know what the depth of the problem is in terms of how many people suffer from it. That would give us a better idea of how to tackle it. Someone might have suggested that—perhaps it was David Davidson—and I missed it.

Mr Davidson:

The current figure for sufferers from eating disorders is similar to the figure for ME sufferers that Alex Fergusson gave. However, those are only the diagnosed cases; many sufferers are not diagnosed until another illness happens to them. Death often results from such illnesses and the cause of death is recorded as something other than an eating disorder.

Dr Turner:

The recorded number of eating disorder sufferers is only the tip of the iceberg. In fact, an awful lot more people out there need treatment. The same situation exists with other illnesses that we discuss on the Health Committee. The sad thing about young sufferers from eating disorders is that when they have to go into hospital they are often pushed into wards that are inappropriate for their condition and which might have inadequate supervision because of a lack of staff. That makes the situation worse. As I said, we should ask the Royal College of Psychiatrists for information.

Kate Maclean:

I tend to agree with Helen Eadie that the petition would lend itself well to being dealt with by the Public Petitions Committee. We are discussing the health aspect of the petition, but discussion of it should also cover education. Much could be done in the education sphere in terms of early diagnosis and support. It would be good if the Public Petitions Committee were happy to take the petition on board. Perhaps a member of the Health Committee who was particularly interested in the issue could work with the Public Petitions Committee on the petition and report back to us.

The Deputy Convener:

Do we agree to write to the Public Petitions Committee to ask whether it is willing to conduct an initial inquiry into the issues that the petition raises? If the Public Petitions Committee agrees to do that, we can consider whether we want to appoint someone to be, technically, our reporter on the Public Petitions Committee. We can ask for volunteers at that time. Is that agreed?

Members indicated agreement.

That concludes our consideration of petitions. [Interruption.]


Asthma Treatment (Prescription Charges) (PE623)

The Deputy Convener:

Sorry, we have one more petition which is for information only. Petition PE623, in the name of Vicki Ferguson, calls on the Scottish Parliament to take the necessary steps to amend existing legislation in order to abolish prescription charges for all medication prescribed for the treatment of asthma. The Public Petitions Committee considered the petition in June and again on 12 November and has copied us into the Executive's correspondence for our information. We need take no action on the petition at this time. Basically, the Public Petitions Committee is keeping us informed about a health-related petition that it is dealing with.