Part of the debate – in the Scottish Parliament on 2nd February 2023.
I am grateful to Sue Webber for bringing the debate to the chamber, and I am glad to have the opportunity to contribute. I have spoken before in the chamber about how being disabled often means that you have to become an advocate—for yourself and usually for others with the same condition, too. You become an activist, because you have to in order to get treatment, to get adjustments at work and to be listened to. I have been overwhelmed by the number of people who got in touch with me to share their stories and information and to make sure that I took part in the debate, which I am happy to do on their behalf.
Having also met #MEAction Scotland last year to discuss its concerns, I have been struck by how consistent and clear the asks from sufferers have been. There is no ambiguity and no murkiness—folk want their doctors to understand what their condition means; they want those who treat ME patients to know what may make the condition worse instead of better, so that they do not cause further harm; and they want clear guidelines so that doctors are armed with the information and confidence that they need to prescribe treatment and support, and so that patients can refer easily to guidance that they trust instead of feeling the need to undertake mass individual research to figure out what their condition means for them and what treatment they need. That is not an unreasonable expectation or an unreachable goal.
Chronic conditions vary widely. I know that, although certain types of physiotherapy and exercise might help me, they could cause long-term damage that is potentially irreversible to someone with ME. However, I have met a lot of people who have had such damage done to them or a loved one because someone who was involved in their care did not have the knowledge that they needed.
One constituent—Morag—shared a very emotional account with me, and, like others, she wanted me to use her story in today’s debate. I am grateful to her for taking the time to share her story—for what I am sure was not the first or probably the last time—after she could not meet me last year because of her condition.
She first told me something very familiar. She knows that her GP is busy, so she speaks to them when a symptom becomes acute and she needs help with firefighting. That is really common among disabled people; there is no check-in for an overview of all the many symptoms that they struggle with every day, so they go to the doctor when a symptom gets really bad. Over time, they end up managing more and more serious symptoms without medical intervention and accept, as normal, things that would have been terrifying earlier in their diagnosis. Because my constituent has a chronic condition, a more managed approach, which allows her to discuss all the things that she is barely managing day in and day out, could really improve her life and give her the space to raise, and receive help with, slightly less scary and immediate symptoms. However, that needs a specialist service.
A few constituents have mentioned comments by Jason Leitch, who said that, while there is no Scottish guideline for ME, NICE guidelines should be used. However, my constituent does not have a care and support plan or a consultant, so she does not have specialist help or multidisciplinary input. NICE guidelines being met is not the reality for ME sufferers who have been in touch with me, and they want a Scottish guideline. My constituent described the added stress of coping alone and how that makes her condition worse. Without managed support, she is so limited by her condition; who knows how much better—or, at least, less difficult—her life would be with specialist help?
I have written to the Highland, Orkney, Shetland, Grampian and Western Isles NHS boards about individual cases, but, when there is such a clear pattern, it shows that national guidance and pressure are needed.