Petitions
Chronic Pain Management (PE374)<br />Myalgic Encephalomyelitis (PE398)
Multiple Sclerosis (Respite Homes) (PE572)
If members will take their seats, we will resume the meeting.
We are joined by Alex Fergusson MSP for the agenda item on petitions. A paper that outlines the current petitions for consideration has been circulated to members. The paper highlights a few concerns about the length of time for which a number of the petitions have been under consideration. Rather than straightforward closure, the paper suggests an alternative approach to the handling of those petitions, which is to invite the Minister for Health and Community Care to attend a future meeting to respond to any outstanding issues. In the past, we have tended to maintain the life of petitions by requesting further information or views from the Executive, sometimes frequently. Of course, that procedure can get information from the Executive, but it is not always particularly helpful and it can lead to an unnecessary lengthening of the time that is taken to deal with petitions, which is not good news for the committee, the petitioners or the Parliament.
The current batch of petitions before the committee consists of petitions that have been under consideration for an extended period. Cover notes have been attached to each petition to outline possible action, on the basis of the action that the committee has taken to date. However, I would like the committee to consider an alternative approach to the petitions.
The petitions on which the committee has achieved its objective—the Executive or non-departmental public body has agreed to undertake work that the committee requested—can, in my view, be closed. They are petition PE374, on chronic pain services; PE398 on myalgic encephalomyelitis and chronic fatigue syndrome; and PE572, on multiple sclerosis respite care. Alex Fergusson is here in respect of one of those petitions, PE398. I give him the chance to say something about not closing that petition.
If I may, convener, I would like to say something. Frankly, I would be rather disturbed if the committee did agree to close the petition at this point. If I may briefly explain why, I would appreciate that opportunity.
Discussion on the petition has been delayed for many years pending responses from the health boards, prompted by the Executive's request for action following a report produced by the Scottish Executive short-life action group that was established in 2002 following a debate in the Parliament on ME. It has taken more than two years since the initiation of that short-life action group to get to this stage.
The health board responses, which have been the cause of delay in the consideration of the petition by the committee, have only recently been brought together and published. Frankly, I think that they highlight the total inadequacy with which the subject is being treated by the health boards across Scotland. It is a piecemeal and haphazard approach, which is in direct contrast to that south of the border, where £8.6 million has been set aside by the Government to fund a nationwide approach to ME and CFS.
Furthermore, we have come across a fundamental difficulty in the approach of the Executive. I would like to quote briefly from a letter of 26 August 2002, when John McAllion, who previously convened the cross-party group on ME, wrote to Malcolm Chisholm, then the Minister for Health and Community Care, to ask whether a Scottish needs assessment programme would be considered by the short-life action group. The reply states:
"A SNAP report can take anything from 18 months to 2 years to produce. It was our hope that the Short Life Action Group would be able to produce suggestions for improvements more rapidly."
However, that short-life action group was never given any epidemiological remit.
Rather worryingly, two years later, in response to another letter from an individual member of the cross-party group, the Executive stated:
"You will have seen that the process of making pump-priming funding available for autism services which Mr McCabe described in his last letter to you took almost four years before the funding was released, and that was based on very clear recommendations made by a Scottish Needs Assessment Programme, for which there is no equivalent for CFS/ME."
Two years previously, the Executive said that it did not need a SNAP assessment. Two years later, we were told that, because there is not a SNAP assessment, no funding can be ring fenced for ME.
Finally, I point out that there is a significant lack of communication between health boards and patients in that respect, which is very much contrary to the policy document "A New Public Involvement Structure for NHSScotland: Patient Focus and Public Involvement", in which paragraph 13 states:
"it is no longer good enough to simply do things to people; a modern healthcare service must do things with the people it serves."
However, according to Greater Glasgow NHS Board, the ME Association, which was the official patients representative on a working group, handed over to the Glasgow ME patients group in 2002. One meeting was held—not with the full group—in 2004, and a suggested further meeting in May 2004 did not take place. I am arguing that patient involvement, as set out in the Scottish Executive's strategy and policy, is not happening in that instance.
I could go on for a long time, as I am sure you are aware, but I will not. Basically, I think that the evidence that we have seen shows that there is a continuing need for a centre of excellence, in whatever shape or form it may take, as requested in the petition, and that the petition's other requests are equally valid. The current approach has done virtually nothing for three years on the issue, and it is doing nothing for the 10,000 to 20,000 acknowledged ME sufferers in Scotland, who are costing the economy greatly and whose plight I believe deserves the fullest attention of the committee and of the Parliament.
We have already discussed how we have proceeded with this petition and other similar petitions over the past few years. This petition is slightly different, in that we have been waiting for a long time for the health boards to tell us what they have been doing in response to ME and chronic fatigue syndrome, and we have only recently received that information. One thing that the information shows is that provision for patients suffering from ME or CFS is patchy, to say the least, across the country. Given that that information has only recently been made available, it would be helpful to put the petition with the other petitions on which we said that we would request further information from the minister, depending on the information that we get back from the cross-party group on ME, following its scrutiny of the information from health boards. I suggest that we add the petition to the other petitions that we were going to discuss at a session with the minister.
We have not quite agreed that we are going to do that. However, I ask that we agree simply to close consideration of at least petition PE374, which is on chronic pain management, and petition PE572, which is on multiple sclerosis respite care. We have an issue with petition PE398, which is on ME and chronic fatigue syndrome, and that petition is clearly a different matter. No member has any objection to consideration of petitions PE374 and PE572 being closed today.
We have had representations from Alex Fergusson and Janis Hughes not to close consideration of petition PE398 today. Do members agree with them?
Members indicated agreement.
Petition PE398 now joins the group of petitions that we must consider how to proceed with.
I want to ask Alex Fergusson about what he said about the postcode lottery with respect to the different responses of health boards. Perhaps he could say something about Tayside NHS Board's response, which is rather disappointing. It seems to say that no action is intended, particularly on inclusion in the health plan, which really means that nothing will happen. Is that a typical or atypical health board response?
I am glad that you used the phrase "postcode lottery"—I meant to use it when I spoke, but forgot. I should also have explained at the beginning that I am here to represent the cross-party group on ME rather than as an individual or to represent my party.
The response that you mention is not typical. I used the words "piecemeal" and "haphazard" to describe the responses; they vary. Quite a lot of action is being taken in Dumfries and Galloway, Fife and Lothian but, to be frank, nothing is being done in Dundee, Orkney and Shetland. Health boards will make their responses to the Scottish Executive sound as good and as proactive as they can—I do not mean that unkindly—so the response from Dundee was worrying, to say the least. That is what the chief medical officer said when he presented the report to the cross-party group around a month ago. It is probably not too strong to say that he intended to rap a few knuckles over the response. There is a range of responses, from Dundee at one end to probably Fife, Lothian and Dumfries and Galloway at the other, with everything in between.
Convener, will you clarify for the Official Report that, although we are closing consideration of the petitions today, we are doing so not in a spirit of unwillingness to take issues forward but because of limitations on the committee's time? Members of the public will read reports of the business that we are conducting and might not understand why we have closed consideration of petitions. Committee members understand that we have done the maximum that we can do within the constraints that we face and I hope that the clerk will make clear when he writes to the petitioners the reasons why the petitions have been closed. I support what Janis Hughes, Shona Robison and other members have said about a winding-up session with ministers on petitions that we have agreed to progress further. There are certainly a number of serious issues that all of us would like to do even more work on, but there is a limit to what we can do.
We are agreeing to close some petitions today and to move towards the closure of the remainder because the committee has exhausted its ability to progress the issues. There would be no great point in keeping the petitions open, because in the short or medium term we will not be able to address the issues that they raise and close the gap between what we are trying to find out and what we have found out. That does not preclude our addressing issues in future that are related to matters that are raised in the petitions. From time to time, when our workload permits, we will decide to proceed with inquiries, such as our inquiry into eating disorders services. The fact that petitions are closing does not mean that the committee will never again consider the issues that they raise.
We have decided to close two petitions and we have decided not to close PE398. We must consider how we will deal with the group of petitions that PE398 now joins.
Have the responses from the health boards in relation to PE398 been circulated to members of the committee?
Yes. Everything that comes in is circulated to members, so that they know exactly what is happening.
Epilepsy Service Provision (PE247)<br />Autistic Spectrum Disorder (PE452)
Psychiatric Services (PE538)<br />Autism (Treatment) (PE577)
Heavy Metal Poisoning (PE474)<br />Aphasia (PE475)
A number of petitions remain open for consideration, in addition to PE398, on ME and chronic fatigue syndrome, which we have just discussed. Normally we would examine each petition in turn and decide on a course of action. I suggest that instead of taking that approach, we invite the Minister for Health and Community Care to attend a committee meeting on a specified day, probably in April or May, between stages 1 and 2 of our consideration of the Smoking, Health and Social Care (Scotland) Bill, so that we can address some of the outstanding issues in respect of the petitions. I suggest that it would be the intention of the committee to close the petitions at the end of the session with the minister, on the basis that by that stage everything will have been done to exhaust what the committee can do about the petitions. Does the committee agree to proceed on that basis?
Members indicated agreement.
Post-mortem Examinations (PE406)
I should also note that a new petition, PE406, has been referred to the committee. The petition is about post-mortem examinations, which is a matter that is likely to be covered in a forthcoming Executive bill. Is the committee content to hold the petition until the bill has been introduced, which is likely to happen towards the end of the year?
Members indicated agreement.