Committee
Public Petitions Committee 19 December 2019
19 Dec 2019 · S5 · Public Petitions Committee
Item of business
Continued Petitions
Myalgic Encephalomyelitis (Treatment) (PE1690)
Dr Calderwood
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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 been diagnosed and to find out about the level of care across our health boards at the moment, or rather the variation in the provision of care, which has already been described. As well as gathering evidence, we have written to all our health boards to ask about the education of healthcare practitioners. We did that in response to the comments that were made by NHS Forth Valley. We have had 10 responses out of the 14 health boards and, unfortunately, the education of healthcare professionals seems to vary a lot, as I suppose we might have expected, given the variation that we have found in other areas. We have been gathering information to enable the working group to set some priorities and to start work. We could not just produce a group and then decide to get the evidence that was needed. We will work with that group, which will include people with lived experience and people from the ME charities, as well as Government officials and multidisciplinary healthcare professionals who are providing care across our health boards. We will take the data that we have—one of the next things that we will need to do is strengthen the collection of data—and the evidence on the range of pathways of care for patients right through to healthcare professionals’ education so that we can map out how we can follow best practice across Scotland and be consistent in all our health boards. The NICE guidance is long awaited, as you know. There has been a further delay for good reason—to capture evidence from those with lived experience—but our working group will not be delayed by waiting for the new guidance, because we already know what work we have to do, as I have outlined. Once the NICE guidance is produced, we will be ready to go. We will have the draft guidance in July.
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—