Chamber and committees

We discussed the duplication of effort across the UK with the Patient Safety Commissioner for England. What working arrangements will need to be put in place to ensure that there is no such duplication and that individual issues in different jurisdictions can be tackled, while enabling information to be shared where there might be a UK-wide issue?

These have obviously been traumatic experiences for you all. What support would you like to see sit alongside a patient safety commissioner to support groups or individuals who raise such cases? As you said, sometimes not hearing back or not getting a resolution to a case can further compound the trauma resulting from a mistake or whatever else has happened that has got that person to the patient safety commissioner. Do any of you have any reflections from your experiences or the campaigns that you are part of?

I think that my questions will probably mostly be to Alison Cave. How can the new patient safety commissioner add value to the existing monitoring systems around medicines and medical devices?

I, too, thank Sue Webber for securing this important debate. I extend my thanks to all those with ME who have reached out to Scottish Green members of the Scottish Parliament to share their stories. I understand that when a person’s symptoms are severe, even writing an email can be enough to trigger a flare-up, so I am grateful to all those who have taken the time to share their experiences.

I join colleagues from across the chamber in welcoming the report of the Scottish stakeholder review of the NICE guideline on ME. Myalgic encephalomyelitis—often referred to as ME for short—is a long-term condition that affects around 20,000 people in Scotland. ME is a complicated condition that can vary significantly among different people, so it is extremely important that we accept and adopt some of the key changes suggested in the review. A central part of that is supporting changes in NICE guidelines and ending the cynicism and disbelief that people who live with ME experience in relation to their condition. It is important that we support those who are living with ME by acknowledging their condition, and that we ensure that others who might have the condition are believed and encouraged to come forward and seek medical support.

As we have heard, ME is a condition with varying symptoms that are specific to each individual. Common symptoms include fatigue, sleep disturbance, issues with recovery from physical activities and cognitive issues around memory and concentration. The severity and prevalence of symptoms can vary widely from individual to individual.

There is no specific test to diagnose ME, which makes diagnosis and treatment difficult for many people. Again, I underscore the importance of having a debate on the issue. Post pandemic, now is a vital time to advance the discussion around ME in the public domain. I am pleased to see the Government’s statement regarding the review, and I welcome its support for the NICE guideline.

I would like to focus on the experience of some of my constituents in Central Scotland. One theme that emerged from constituents is the lack of belief among healthcare professionals in patients’ ability to advocate for their own healthcare. Even though the new NICE guideline on ME, which was published almost two years ago, advised against use of treatments including graded exercise therapy, some patients with ME are still being recommended that treatment by doctors in Scotland. One woman described how, during her first appointment in June 2022, the doctor said that he knew that graded exercise therapy got a bad rap, but that it could be effective for some people. When she replied that she would never engage in graded exercise therapy because her daughter’s ME had become severe due to constant pressure on her to do more and to push herself beyond her energy limits, the doctor justified his advice with what the patient believed was further misinformation about deconditioning. That is just one example from many stories of patients who feel that they have little choice but either to accept advice, even if it goes against the research that has been produced by charities that have campaigned on ME, or to be labelled as refusing to engage with their care.

When people with ME need to become their own best advocate, they become less trusting that our healthcare system will acknowledge and address their medical needs. We still have a long way to go in understanding how patients can manage ME long term and avoid issues continuing to appear. I would appreciate the minister outlining actions that have been taken, or are due to be taken, on the report’s recommendation that pilots be funded in various health boards to develop specialist services. I am pleased that patient involvement will be an important part of that work; I fully support that and the third sector collaboration that is to be embedded in the design.

I thank #MEAction Scotland for all the work that it is doing to support individuals with ME. Its advocacy and policy work have done much to give the debate greater prominence, and for the betterment of individuals who live with the condition.

However, we should be clear that ME is not a rare condition: its prevalence is four in 1,000 people in Scotland. It is vital that we begin to acknowledge that the condition is prevalent across the population and that we build in support measures for people to come forward and gain the diagnosis and support that they need.

Baroness Cumberlege, how would you respond to those who argue that a patient safety commissioner should have a role in dealing with individual cases and complaints?

How can public expectations of the patient safety commissioner’s role in promoting the voice of patients be suitably managed without their taking on those individual cases and complaints?

Do I have time for one more question, convener?

Thanks.

You mentioned communication in relation to the patient safety commissioner. What is the most effective way of communicating changes that are made as a result of issues where there are trends and things need to be changed either in individual health boards or in the system as a whole? That communication might provide redress and some comfort to some of those who have raised concerns. How can it most effectively be done?

I congratulate Siobhian Brown on securing time for this really important debate, and I thank all those who have been campaigning on the issue, particularly Less Waste Laura, ASH Scotland and Asthma + Lung UK.

The explosion in the use and popularity of single-use vapes, especially among young people, is multifaceted and difficult to tackle. I was pleased that, in response to my question, the Scottish Government committed to exploring a ban on single-use vapes. I share the concerns that Siobhian Brown and others have raised around such age-restricted products being marketed and sold to children. As the Asthma + Lung UK lung health champion for young people, I believe that we need to involve young people in such conversations, and I hope that, in the coming months, I will be able to work with the Scottish Youth Parliament and others to get their views.

Dundee City Council recently reported that 62 per cent of sites visited sold vapes to a test purchaser who was under 18. That is a real issue for councils, but I should stress that it is not restricted to Dundee. Those who repeatedly flout the rules could be banned from selling vapes and tobacco for up to 24 months, and I know that some of my councillors have raised the issue of how to deal with the large number of retailers selling vapes and the compliance issues that that causes.

In addition, if any of us wanted to, right now, we could order—via Just Eat, Uber Eats or other, similar platforms—vapes directly to this building. The people who deliver the product are supposed to check age on delivery, but how many are doing so? Although test purchasing from stores is a well-trodden path, it is an even more difficult area for councils to gauge.

The flavours of vapes that are available is an issue of concern to many parents, who believe that they are being targeted at children. We are hearing anecdotally that large numbers of children and young people are taking up vaping who probably would not have smoked. That is partly due to the appeal of the flavours, the disposable nature of vapes and the ease of getting them. We must ensure that their advertising to children is restricted.

Some of the ways in which children may be exposed to vapes, as with some issues relating to alcohol, are a reserved matter, but I hope that the UK Government will take action on the issue and ensure that children do not have age-restricted products advertised to them. I believe that the ban on such advertising should extend to stores, and I am pleased that so many members across the chamber believe that, too.

Just before Christmas, I wrote to some major retailers to ask them to treat vaping products in the same way as cigarettes are treated. I was disappointed by the responses that I received; indeed, sometimes, I did not receive a response at all. Many of those retailers were very proud when they removed sweets and other less healthy products from till lines, which they did mainly to improve the health of the population. I do not understand why that does not extend to the prominent placement of other health-harming products in stores, some of which are not only in prominent places but could be reached and picked up by children. I hope that, in the coming weeks, we will see a change of heart by the big supermarkets and other major chain retailers, and that they will put such products behind cover.

The strength of some vapes, as we have heard, is astounding, with some single-use vapes containing as much nicotine as 40 cigarettes. People who vape are being exposed to far higher levels of nicotine than they may realise.

The environmental issues are important, too. As I am sure that many in the chamber are aware, the number of vapes that litter our streets and parks is growing. Siobhian Brown highlighted that some children are picking them up to see what they have left in them, which is undoubtedly a public health concern. We have heard about how difficult they are to dispose of, let alone recycle. The lithium batteries in them present a risk of explosion if disposed of incorrectly. As Clare Adamson said, retailers who sell such products should be taking them back. We need to make people more aware of the appropriate ways to dispose of them and make sure that they are banned in the long term.

I again congratulate Siobhian Brown on securing time to debate the issue, and I hope that members across the chamber can work together to tackle it.

I thank the minister for taking an intervention. She recognised the impact that the tobacco industry has. Will she join the calls that I have made to retailers to consider putting these products behind cover where they cannot be seen by children and young people, in order to reduce that impact?