Chamber and committees

Is there enough clarity in the bill on whether assisted dying would be considered a reasonable treatment option?

Is there enough clarity in the bill on whether assisted dying would be considered a reasonable treatment option?

Good morning. What are the practical implications of the devolved competence limits for implementation of the bill, particularly around specifying an approved substance for assisted dying? I ask Lynda Towers to comment first.

You have both mentioned the concerns that you have that people with dementia and Alzheimer’s could come under the bill. What additional safeguards should there be for those people?

I will go back to Lynda Towers for a response to my next question. The member in charge of the bill has identified orders under sections 30, 63 and 104 of the Scotland Act 1998 as options for addressing potential competence issues. Do you have any views on the advantages or risks of that approach?

That is great—thank you.

This has been an interesting debate and I will reflect on some of the contributions. In her opening statement, the minister laid out how important it is to look after women’s health because, in doing so, we are looking after the nation’s health. It is important that we point to factors outwith the minister’s portfolio and the women’s health plan that have an effect on women’s health. The minister mentioned unpaid carers—that is the perfect example of how factors in many other portfolios can drive health inequalities, or otherwise. The rate of carers allowance, access to carer support plans and the ability to get respite to attend appointments all have an impact on carers’ health.

Another area that the minister mentioned is pregnancy and baby loss. Several friends have pointed out to me that they found it interesting that, during their pregnancies, almost every symptom that they asked healthcare providers about was described as normal, even when the symptoms were complete opposites—for example, having a higher-than-normal appetite and being concerned about that, or having no appetite at all when they believed that they should have. Both symptoms were totally normal, and I think that we need more information and clear explanations in those areas.

Many women have been told to just battle on with debilitating symptoms in pregnancy that we would not expect anyone else to battle on with, purely because there is a stigma around how early it is okay to tell people about a pregnancy. I know some friends who, after a loss, regretted not telling their family earlier. They had a bereavement without having had the celebration of their happy news. We need to assess whether some of those norms are making losses harder, and I commend Kenny Gibson for sharing his personal experience in that regard.

We need to ensure that employers are aware of all the ways in which they can support pregnant women and that women are supported to reveal their pregnancies whenever they are ready to do so, not when tradition dictates that it is okay, especially if they feel that they need support.

I am glad that the baby loss memorial book is open to those who have historically had a miscarriage. I am sure that many of us have had meetings with those who have historically lost a pregnancy and have heard them speak about the sense of validation of their experience.

Alex Cole-Hamilton, Clare Adamson and others have mentioned postpartum depression and postpartum psychosis, among other issues that are hugely important to address. The Health, Social Care and Sport Committee has undertaken work on perinatal mental health, and it would certainly be worth repeating such work in a future parliamentary session.

Emma Roddick mentioned chronic pain and how not being believed about a multitude of symptoms, but pain in particular, is devastating for many. Why the default is not just to believe that women are experiencing pain and then try to find out what is causing it to manifest, rather than not believing that the pain exists in the first place, boggles my mind.

Kenny Gibson kindly mentioned my chairing of the PBC event last week. Primary biliary cholangitis, which is not easy to say at this point on a Tuesday afternoon, is an autoimmune liver disease that predominantly affects women—women account for around 90 per cent of all cases. The symptoms of PBC, such as itch and fatigue, can have a profound impact on a person’s quality of life and mental wellbeing. Those affected often feel misunderstood and sometimes stigmatised, because, unlike many other liver conditions, PBC is not the result of alcohol or drug consumption. Instead, risk factors may be gender, older age, genetics and where a person lives.

In my opening speech, I spoke of my awe for those women, who shared raw experiences of how PBC has affected, and continues to affect, their lives—how it has affected their families, their experience of transplant and their own mortality. They spoke with passion about what they want to see and how they see their own care. I encourage others to engage with the groups that were represented at that event.

Kenny Gibson and others also mentioned cardiovascular health. We know that heart attacks often manifest with different symptoms in women. Many of us try to raise awareness of those symptoms, but their not being accurately defined in women is potentially a big problem. That is why I will not stop going on about data, and it is why I was really pleased to see a review of the data landscape published alongside the women’s health plan report. Some of the data that we need to see is not just more things that the Government should collate, but specific funded academic work that is done to ensure that we better understand many of the symptoms and causes.

Organisations have asked for other issues to be raised that I did not have time to address earlier, so I will try to race through them now. Breast Cancer Now has underscored the need for a stronger emphasis to be placed on a life-course approach when women interact with the healthcare system. More should be done to provide women with information on how to check their breasts, to remind them when they will be invited for breast screening and to provide them with the tools to make an informed choice to attend.

That organisation also points to the fact that the Scottish Government’s major review of breast screening in 2021 recommended that bringing high-risk screening within the remit of the national screening programme be considered. That project is outside the programme board’s scope and would require a specific business case and funding. Breast Cancer Now advocates for the next iteration of the women’s health plan for Scotland to provide an opportunity to fulfil the review’s recommendations and to conduct a larger piece of work to fully assess the potential advantages, feasibility, benefit and cost of integrating high-risk surveillance with the national screening programme.

Engender has highlighted the need for more details to be provided on how Covid-19 has impacted women’s health outcomes and affected the implementation of the women’s health plan, including whether it has limited the scale of change that has been delivered. Engender has also renewed its calls for future work on women’s health to focus on an intersectional approach that recognises and addresses the health experiences of minority and marginalised women.

I look forward to working with and learning from Professor Anna Glasier on the next iteration of the plan, as well as working with the minister and the rest of Government to achieve the aims that we all hold dear. I hope that we can continue in the largely constructive tone that we have had today.

Will the minister take an intervention?

I am intervening partly to give the minister a wee minute to get a sip of water. Does she recognise that we need to keep mums well throughout their pregnancy and ensure that they are supported to have the best possible mental health during that journey? In that way, when issues creep up in post-partum situations, there are existing support mechanisms in place for them.

Absolutely. It very much helps us all if we work collaboratively in the sphere of women’s health. I hope that we will have a similar level of conversation in the next stage of the abortion law review, which will take us into a slightly different space from the question purely of access. I thought that the conversation that we had on safe access zones was quite grown up and even tempered, and I hope that that can be taken forward on the next issue.

Although I recognise the strides that have been made between 2021 and 2024, I also want to shed light on some critical areas that remain unaddressed or that require more attention. It is important to highlight issues such as access to fertility services, comprehensive support for endometriosis and systemic inequalities in health outcomes for women from minority and disadvantaged backgrounds. The report demonstrates that a stronger focus is also needed on addressing delays in diagnosis for conditions that uniquely or disproportionately affect women and on ensuring equal access to healthcare services across urban and rural areas. There also remain significant data gaps that act as a barrier to understanding and addressing women’s health needs comprehensively. Conditions such as polycystic ovary syndrome, premenstrual dysphoric disorder, endometriosis and other underresearched areas still suffer from a lack of robust data, which impedes progress on effective diagnosis and treatment.

Several organisations that are directly involved in improving women’s health have reached out to us, and I will use the short time that I have left to highlight some of their very important observations and asks. #MEAction Scotland highlights that myalgic encephalomyelitis or chronic fatigue syndrome is a complex chronic illness in which 80 per cent of patients are women. It is thought that there are approximately 58,000 cases in Scotland, but that remains an estimate because we continue to lack robust data. There are several reports of women being disbelieved and dismissed by doctors, and diagnosis can take years if it happens at all. #MEAction Scotland points to the need for healthcare education to accurately quantify disease burden, along with the urgent need for data to be collated nationally in order to understand the full picture.

As the motion rightly notes, one of the biggest thank yous should go to all those who have spoken to us about their health issues and their often very long journeys to diagnosis. For many, that journey has already happened or concluded. They often give their experience—sometimes at their own cost—to make sure that no one else has to go through what they did. For some, that has been decades of campaigning, and we should rightly take on their wealth of experience from that.

We must continue to build on the momentum of the 2021 plan to increase awareness of women’s health. The first phase of the plan has provided a solid foundation to build on, but the rest of the work must not be delayed. Women across Scotland are counting on us to continue advocating for them and their rights. Continued commitment to the unmet goals is crucial if we are to fully realise the vision of the women’s health plan and deliver a Scotland where all women can achieve the care that they need.