Petition PE398, from Helen McDade, calls for the Scottish Parliament to urge the Scottish Executive to carry out a strategic needs review assessment on ME and chronic fatigue syndrome and to take a range of other steps in relation to the treatment of and research into those conditions. The Public Petitions Committee has referred the petition to the Health and Community Care Committee and asks whether we intend to, and whether we could, conduct an inquiry into the issue. The Public Petitions Committee has also requested comments from the Executive on issues that the petition raises and has asked for updates on the ME working group—which is based in England—on which the Executive has observer status. As far as we are aware, the Public Petitions Committee is still waiting for a response. I ask Mr McAllion, who is the convener of the Public Petitions Committee, whether that is correct.
Official Report · Committee
Petitions
Myalgic Encephalomyelitis (PE398)
Speakers
Choose an MSP to read only their contributions- Margaret Smith LD 13
- John McAllion Lab 7
- Dorothy-Grace Elder SNP 7
- Margaret Jamieson Lab 6
- Mary Scanlon Con 2
- Janis Hughes Lab 2
- Shona Robison SNP 1
The record
38 contributionsYes, it is. The petition was one that most impressed the Public Petitions Committee by the way in which it was presented and by the evidence that supported it. The committee's view was that the petition should be pursued. We are awaiting the chief medical officer's report on the situation in England and Wales, which will obviously have an influence on the Scottish Executive. However, the report is not binding on the Executive, which could take a different course of action. I understand that there has been a problem with the CMO's report and that the psychiatrists involved in it have withdrawn from the working group because they are not happy with the report's conclusions. That might make the cross-party group in this Parliament happy, because we have been trying to establish the physical nature of ME. The petition merits further investigation because ME has long been neglected in Scotland. There is a much support throughout the country for the petition. Many ME groups want the Parliament to take the matter seriously and I hope that the Health and Community Care Committee will do so. I should declare an interest, in that I am the convener of the cross-party group on ME.
That is duly noted. I think that we have probably all been lobbied at one time or another about the issue. I have been lobbied by local ME sufferers. There is a great deal of sympathy for what John McAllion has said.
The deputy convener of the cross-party group on ME, Alex Fergusson, spoke to me about the petition. He, too, made John McAllion's point about the psychiatrists pulling out of the CMO's group. He said that 25 per cent of those who are worst affected by the condition do not support the CMO's group, in which there seems to be little faith. He has asked me whether we can take a fresh look at ME in Scotland and take a lead by supporting the establishment of a group to carry out further research. In fact, we are being asked to support the actions set out in the petition.
Given that we seem to be in a period of flux with regard to what the CMO's working group is doing in England, probably the first thing we should do is establish exactly what is happening and what time scales that group is working to. When we have that information, we can return to the issue and decide whether we want to investigate the matter as a committee. Despite my earlier comments, I have to remind committee members yet again of the work programme that we have ahead of us. We have five pieces of legislation to deal with between now and next summer. Before we take anything on, we have to be aware of the impact that it could have on other parts of our work programme. That is not to denigrate in any way the worth of the petitions that are before us, but we must be aware of that. We shall return to ME at a future meeting, when we have elicited a bit more information about what is happening with the CMO's group in England. Is that agreed?Members indicated agreement. Organ Retention (PE370)
Petition PE370 is from Lydia Reid on behalf Scottish Parents for a Public Enquiry into Organ Retention. I hope that our earlier decision on the issue stands. We shall return to the matter. Is that agreed?Members indicated agreement. Chronic Pain Management Services (PE374)
Petition PE374 is from Dr Steve Gilbert and calls on the Scottish Parliament to act urgently to redress the underfunding of chronic pain management services, to debate the matter in Parliament and to urge the Minister for Health and Community Care and health boards to move chronic pain up the health agenda. The Public Petitions Committee considered the petition on 11 September and agreed to refer it to the Health and Community Care Committee for our consideration, drawing particular attention to the lack of pain services provision in the Highlands. We agreed on 19 September to ask the Executive what action it intends to take to assess the needs of patients suffering from chronic pain and whether current chronic pain management programmes deliver the appropriate services. The Executive health department has responded. Members should have a copy of that response. Are there any comments?
The problem was that the Executive misunderstood the brief on the petition. That is why we had to refer it back. It included such things as palliative care. The petition is not to do with palliative care. Chronic pain is something that affects up to 500,000 Scots in the community, most of whom do not have life-threatening problems but are suffering from back pain or arthritis, which cause terribly severe pain. The Executive still does not seem to have grasped that point.
I support what Dorothy-Grace Elder says. The Executive misunderstood the nature of the petition and its response includes services that are not relevant to the petitioner's concerns.
Is it your understanding that some of the facilities and services that are listed in the Executive response would fall into that category again?
Yes. That is why we have two separate cross-party groups in the Parliament, one on palliative care, the other on chronic pain. I declare an interest: I am convener of the cross-party group on chronic pain. I think that the Executive has made a simple mistake. I do not think that it has deliberately skewed its response, but I think that we should continue to push for the right response.
Do members agree to write again to the Executive to ask for further clarification on chronic pain management other than palliative care?
Where are the references to palliative care in the health department's response?
I certainly saw one letter that referred specifically to palliative care—
One. There is one reference in relation to Argyll and Clyde Health Board. There are no references to palliative care in relation to Ayrshire and Arran, Borders, Dumfries and Galloway, Fife, Forth Valley, Grampian, Greater Glasgow, Highland, Lanarkshire, Lothian, Orkney or Shetland. I have difficulty following what Dorothy-Grace Elder and John McAllion are pursuing here.
Let us be clear. Given the point that Margaret Jamieson has made, are you saying what you are saying because you know that some of these services involve palliative care, or are you making that comment on the basis of the one service that is mentioned as being palliative care?
Palliative care is mentioned right at the beginning, albeit in relation specifically to Argyll and Clyde. However, the fact that it is mentioned at all—in view of an earlier response from the Executive—shows that we are still talking at cross purposes, to some extent.The Executive response makes such statements as "Borders … anaesthetist led." One of the problems is that chronic pain management is being dumped on anaesthetists. Although the Executive wants to bring in many other specialties, chronic pain management is sidelined into an anaesthetist doing it as a small part of his or her job sometimes.
Maybe I am misreading this response. My understanding of what it says about Argyll and Clyde is that a formal chronic pain management service is provided. However, under the heading"any improvements planned for year ahead", we are told:"Palliative care strategy may include proposals for chronic pain management."My understanding was that that would be extra to the formal chronic pain management service that is already provided at Inverclyde royal hospital. The response also suggests that Argyll and Clyde patients can be referred to Glasgow and states that Glasgow provides a service.
Glasgow does provide a service, as does Edinburgh, but those services are overladen with patients from other areas. Look at the number of blanks that are in the response: "Forth Valley … none … none", et cetera, et cetera. I refer members to the section on Greater Glasgow. It states:"Anaesthetist led chronic pain service at 5 acute sites."Those are heavily overburdened doctors who are already doing big jobs as anaesthetists. They want proper pay and service. Look at the section on Highland Health Board. The response states:"Acute pain service only at Raigmore, Inverness."Acute pain should not be mentioned there; we are talking about chronic pain.
Dorothy-Grace Elder needs to go back and look at what petition PE374 talks about. It does not talk about who delivers the pain management; it says that it should be moved up the health agenda. We have a baseline report that says, "This is what we supply currently in each of the health board areas. This is what they are going to do for the future." The Executive is taking the issue forward. It meets the terms of the petition. The petition does not ask us to do what Dorothy-Grace Elder is indicating.
I agree with Margaret Jamieson. Traditionally, anaesthetists have been the clinicians who have provided chronic pain management. In some of the trusts, pain nurses are also available, which is the way in which we want to see things going. I thought that the petition was looking for services to be provided. We now seem to have evidence that those services are provided in most areas, and I do not understand why there is a problem with that.
I support what Dorothy-Grace Elder is saying. I know from personal experience in Dundee that there are serious problems. Somebody who was associated with the pain clinic there killed himself. These services are underfunded throughout Scotland.The information that we have before us this morning should be taken in conjunction with the earlier response from the Executive, and we should press the Executive for a clear statement on where chronic pain services are available, why they are not available in some areas and what it intends to do about the situation. We have not had that kind of statement from the Executive, and we should push for it.
Although this seems a fairly comprehensive list of services, which appear to cover the whole of Scotland, the response does not show us the strain on any of them; nor does it give us further information about whether they are coping with the demand in any given place. To be fair, I do not think that that was the question the Executive was asked.We can do two things. We can note the petition and what it has asked for. Alternatively, having asked the question and been given a certain amount of information, the committee can ask the Executive anything at all. We can, therefore, ask further questions on the back of the information that we have elicited so far. It is entirely up to committee members.
Could we not do both? That would satisfy the issue about what the petition relates to and show that the committee is concerned that there is a lack of information in an associated area. We could ask for that information and I suggest that we do so and continue with business.
I support asking the Executive to consider the inconsistencies of approach throughout Scotland and whether it could recommend some sort of protocol or guideline to address those inconsistencies. The petition is about underfunding but we would be concerned about the inequalities of access to chronic pain services. We could ask for a commitment to a consistent level of services across Scotland.
We also need the Executive to give us waiting times. At the moment, at Ninewells hospital in Dundee, it takes six months to see a chronic pain consultant; in Glasgow it takes about four months. We are getting fudgy information. For example, the Executive's response on improvements in Lanarkshire in the past year states:"Results showed service seen as acceptable to patients but with scope for improvement."What does that mean? I know that only 10 per cent of Lanarkshire patients who are suffering from chronic pain can get access to a chronic pain clinic. The service might be seen as acceptable but only 10 per cent of sufferers are getting that service. We have all those statistics but would like to see what the Executive says about every area of Scotland. Waiting lists are a key issue.
Shona Robison pointed out the sensible way forward. We have asked questions about the petition and the Public Petitions Committee has drawn it to our attention. The Executive's response probably does answer the petition. However, having been shown the range of services, we can ask for further information on some of the points that colleagues have raised. A key point is whether supply and demand are matching one another or whether there are identifiable pockets where demand is not being met by the services that appear to be available throughout the country. The committee has general concerns and wants the issue of chronic pain to be flagged up to ensure that the Executive is aware that concerns have been raised with the committee. Are we agreed?Members indicated disagreement.
I do not think that we have the information to answer the petition. The petition asks for Parliament to redress the underfunding of chronic pain services. We do not have the information to say that that is what is being done.
We do not have the authority either.
We are seeking information to answer the petition and I do not see why we cannot ask for further information.
There are hardly any improvements listed—
Dorothy-Grace, please address your comments through the chair.
I keep returning to the original wording of the petition. John McAllion is raising another issue about underfunding, which is subjective to each and every one of us.
It is in the petition.
It might well be, but we need to go back to find out what the Public Petitions Committee asked and whether it drew attention to the underfunding aspect of the petition. If attention was not drawn to that, you would not receive a response. The response from the health department provides answers about the situation in each health board area. Did the Public Petitions Committee ask the health department specifically about waiting times and waiting lists?
I ask John McAllion to clarify whether the question of underfunding was raised with the Executive.
That question was raised in petition PE374. The Public Petitions Committee's view was that the Health and Community Care Committee should address the petition, as it was not for the Public Petitions Committee to do that. Petition PE374 asked the Public Petitions Committee to address underfunding of chronic pain services in Scotland. I suggest that we do not yet have the information to respond to the petition.
There are two ways of looking at the matter. Either we decide that we do not have the information to make a decision, or we decide to continue with the petition by asking for further information.I am of the view that we need further information on petition PE374. As colleagues do not have a different point of view, do members agree to ask for further clarification about the petition and what was asked of the Scottish Executive? If so, we will return to the petition at a future meeting.Members indicated agreement.
In this meeting
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