Committee
Public Petitions Committee 19 December 2019
19 Dec 2019 · S5 · Public Petitions Committee
Item of business
Continued Petitions
Myalgic Encephalomyelitis (Treatment) (PE1690)
I will reflect on some of the comments that have been made to us in submissions. In one anonymous submission, a person said that they did not feel there was any sense of urgency for change to relieve their suffering, and we have heard that from various people. In his submission, Stuart Brown concludes: “ME patients have every reason to believe that the NHS doesn’t understand them, doesn’t care about them and has no intention of changing.” Can you respond to that? It is a theme of the concerns that have been flagged up to us. Specifically on the pacing, graded activity and cognitive behaviour therapy—PACE—trial, you suggested that you thought that there was some benefit from the treatments that are being offered, but one of the contentions from the petitioner and others is that not only are the treatments not beneficial—there is no evidence that they are beneficial—but if they are persisted with, they cause further problems in some circumstances. Professor Brian Hughes has looked at the methodology on the PACE trial. It is probably beyond this committee to understand a lot of the technical details to do with methodology—I would certainly not want to pretend to be an expert on that—but what reassurance can you give us that such questions are being addressed through the national health service? Gail Ross made the point that some health boards are now saying that there is no such thing as ME and that the world has moved on. The difference in the approach of different health boards must undermine people’s confidence. I am not asking you to deal with the specifics of the issues that have been flagged up, but what reassurance can you give the committee that those concerns will be addressed?
In the same item of business
The Convener (Johann Lamont)
Lab
I welcome everyone to the 22nd meeting of the Public Petitions Committee in 2019. The first and only item on our agenda is consideration of continued petitio...
The Cabinet Secretary for Health and Sport (Jeane Freeman)
SNP
Thank you, convener, and good morning to you and committee members. As you know, I wrote to the committee in September. The opening statement that I am about...
The Convener
Lab
Thank you for your statement. We received a further submission with some questions from the petitioner. I think that you have a copy of it. If we do not mana...
Jeane Freeman
SNP
Given that the chief medical officer was involved in that, I am happy to ask her to respond.
Dr Catherine Calderwood (Scottish Government)
I met Professor Chris Ponting, who has a long interest in research on ME, and officials from the chief scientist office and Action for ME. We had a very help...
Gail Ross (Caithness, Sutherland and Ross) (SNP)
SNP
Cabinet secretary, you mentioned in your submission and your opening statement that the Scottish Government continues to liaise with NES to explore opportuni...
Jeane Freeman
SNP
NES has a practice-based small group learning membership that includes general practitioners. That group has prioritised ME as a module for NES to produce in...
Gail Ross
SNP
On continuing professional development of our medical staff, I was concerned that NHS Forth Valley said in its response that it sees the diagnosis of ME as a...
Jeane Freeman
SNP
That is not uncommon, to an extent, with neurological conditions. Yesterday, I had a discussion with some of our clinical advisers and colleagues on attentio...
Gail Ross
SNP
But if the health board as a whole is not even recognising a diagnosis of ME, we are not talking about misdiagnosis; the board is simply refusing to diagnose...
Jeane Freeman
SNP
I understand what you are saying. In publishing the framework for action, we want to raise the issue directly with all those who have been involved through o...
Maurice Corry (West Scotland) (Con)
Con
I note the comments that you made in your opening statement, cabinet secretary. The committee understands that you have spoken to many stakeholders from the ...
Jeane Freeman
SNP
Part of the reason for commissioning the pieces of work by the Scottish Health Council and the Scottish public health network that I referred to towards the ...
Maurice Corry
Con
That will help to address NHS Forth Valley’s comments. Thank you—I am happy with that.
Brian Whittle (South Scotland) (Con)
Con
In January, the chief medical officer told the committee that the Scottish Government was creating a working group to look at the provision of services. You ...
Jeane Freeman
SNP
Part of what the short-life working group will have to work with are the two pieces of work that I have commissioned, which will provide it with evidence on ...
Dr Calderwood
There will be some frustration about the delay, but we are starting from a baseline of very little data. We want to know about the number of people who have ...
Brian Whittle
Con
Cabinet secretary, you mentioned in your opening statement the two pieces of work that the Scottish Government has commissioned. Forgive me if I missed this,...
Jeane Freeman
SNP
You are referring to the updated needs assessment by the Scottish public health network and the Scottish Health Council’s work on what good care and support ...
Brian Whittle
Con
What has the Scottish Government done to ensure that the ME community is kept up to date with the timescale and the developments that are in progress?
Jeane Freeman
SNP
A number of meetings have taken place between my officials and stakeholders in the ME community, including the petitioner. We will continue that process of k...
The Convener
Lab
I will reflect on some of the comments that have been made to us in submissions. In one anonymous submission, a person said that they did not feel there was ...
Jeane Freeman
SNP
Thank you for that, convener. Your questions are important for those who are suffering from ME, and it is important for our wider clinical community to hear ...
The Convener
Lab
In its submission, NHS Lothian resists the critique of the PACE trial that has been provided by the ME community. The argument is that something should be bu...
Dr Calderwood
Yes, I agree that we will need to look at that carefully. We could write to the committee. I can ask Chris Ponting and others to help me to look at the PACE ...
The Convener
Lab
Thank you very much for responding to our questions. We will have to reflect on what we have heard. If there are points on which you want to respond further,...
Jeane Freeman
SNP
Before you do that, convener, I would like to say that we will answer all the questions that the petitioner submitted on 17 December, and we will copy you in...
The Convener
Lab
Thank you. I appreciate that. 09:20 Meeting suspended. 09:23 On resuming—