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Public Petitions Committee 19 December 2019

19 Dec 2019 · S5 · Public Petitions Committee

Item of business

Continued Petitions

Myalgic Encephalomyelitis (Treatment) (PE1690)

Freeman, Jeane SNP Carrick, Cumnock and Doon Valley Watch on SPTV

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 and understand my answers. I completely understand the frustration that people feel about what they perceive to be a lack of urgency and pace in this work. The core reason behind that is partly what the CMO has already said and what I have said. As the committee knows, we need to move with pace on the basis of the data and the evidence that we gather. That is why the work that we have commissioned is so important, a significant amount of which we will have in the early part of 2020. The short-life group will have the data that the CMO has outlined so that it can begin to look at what good-quality care is. I said at the outset that people who are suffering from ME have as much right as anyone else to consistent, high-quality care across the country. The piece of work that the Scottish Health Council is undertaking to understand what good looks like will be really important in mapping out what the right patient pathway would be for diagnosis, potential treatment and support. In parallel with that is the work with the clinical community that NES is leading, so that people’s understanding and awareness of ME as a neurological condition—I said this at the start and I want to repeat it—is well understood. All of that is taking place in the context of our plan and the framework for action. It is important that the ME community knows that it has been involved in the construction of the plan, along with other stakeholders, and that it knows that we are very clear that ME is a neurological condition. If we have boards that believe that ME is a historical matter and that the world has moved on, we need to correct their understanding. We also need to ensure, through undergraduate and postgraduate training and continuing professional development, that our clinical community is aware and has a degree of understanding of how to distinguish between different neurological conditions in diagnosis, and that a consistent pathway is delivered across the country to provide the support that people need and are looking for. All of that is the end goal. To get there, we need to have the better data that we are currently trying to gather in order to map out the necessary steps. 09:15 We have said that the GET and CBT treatments are controversial treatments that certainly do not work for everyone; I completely understand that. It should not be the case that they are expected to be helpful and effective for everyone with a diagnosis of ME. I say again—we need to make sure that our clinicians understand this—that patients should be the drivers of decisions about the treatment that they are given or are prepared to undertake. When patients say, “This not only does not work for me but is positively unhelpful to me,” clinicians’ responsibility is to have that conversation and to see what else might be helpful, which might go beyond their immediate role to that of a wider multidisciplinary team. That is part of the work that we need to undertake.

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Public Petitions Committee 19 December 2019

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