Meeting of the Parliament (Hybrid)

Meeting date: Tuesday, January 11, 2022

Official Report 966KB pdf

---

Endometriosis

I remind members of the Covid-related measures that are in place and that face coverings should be worn when moving around the chamber and across the Holyrood campus.

The final item of business is a members’ business debate on motion S6M-01569, in the name of Rachael Hamilton, on endometriosis. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes the view that there is a need to raise awareness of the widespread nature of endometriosis; understands that this painful disorder affects an estimated 10% of women worldwide and is the second most common gynaecological condition in the UK; believes that, despite its widespread nature, healthcare professionals still find it difficult to diagnose and treat the condition and that this situation has affected women in the Scottish Borders and across the country; recognises the Scottish Government’s commitment to reduce the average time taken to diagnose endometriosis from eight years to less than 12 months during the current parliamentary session, as outlined in the Women’s Health Plan; acknowledges the work done by the UK Parliament’s All-Party Parliamentary Group on Endometriosis in highlighting the key areas that need to be addressed in order to see a reduction in the time to make a diagnosis, and notes the calls for the Scottish Government to present MSPs with a detailed plan and timeframe for achieving this target.

17:19  

I am truly delighted to be able to speak on this subject tonight, and I thank my parliamentary colleagues for supporting the motion.

A lot of people do not know what endometriosis is, and—as we may find out tonight—some find it difficult to pronounce. I will open the debate by quoting a young woman from the Borders who lives with endometriosis. She says:

“Endometriosis is a cruel disease. To live with endometriosis is living with the constant feeling of guilt, worry, feeling alone and misunderstood. It is a crippling pain, the type that slowly but surely takes everything away from you, meaning you cannot plan ahead. It is a constant pain, a constant anxiety that can be dismissed for almost 8 years before someone believes your pain is actually real.”

She goes on to say:

“Living with endometriosis can be like survival for many, waking up each day with immediate and intense pain. Being betrayed by your own body, repeatedly and unpredictably”.

That woman’s experience is backed up by a recent survey that was conducted by the BBC, which found that the majority of the 13,500 women who responded felt that the condition had badly impacted their mental health, career and education. Furthermore, endometriosis costs the United Kingdom £8.2 billion in lost earnings, healthcare costs and costs to the welfare system.

I would like to share some facts. Endometriosis affects 10 per cent of women—that is more than 1.5 million women in the United Kingdom. That makes the condition as prevalent as asthma and diabetes. The impact of this long-term health condition can be detrimental to all areas of life. It takes on average eight and a half years to be diagnosed, which is unacceptable, and many feel that they have been dismissed by health professionals, with their pain and symptoms being normalised. Endometriosis is the second most common gynaecological condition in the UK. Sadly, its cause is unknown and there is no definitive cure.

I want to see change, and I am glad that I have the support of so many colleagues in the chamber tonight. I could not hold this debate without paying tribute to Sir David Amess, who worked tirelessly to raise awareness of endometriosis and improve services for those affected by it, including in his role as chair of the Westminster all-party parliamentary group on endometriosis. In recent years, his work was crucial in bringing about greater public awareness and understanding of the condition.

The APPG was launched in 2018 to raise awareness. It brought together parliamentarians across Westminster, from all the political parties, to debate the key issues affecting people with this debilitating condition and investigate how patients can receive the support that they need. In October 2020, the group produced a report that analysed the current approach to endometriosis in the UK. It concluded that, first, there must be

“A commitment to drive down diagnosis times”.

We, in the chamber, can all agree that a waiting time for diagnosis of eight and a half years is outrageous. Secondly, the group concluded that there must be

“access to appropriate care”.

The report said:

“The NICE Guideline on Endometriosis Treatment and Management was issued in 2017 and has been adopted across the UK, but not”

yet

“implemented.”

It went on to say:

“The APPG is calling for Government and NHS commitment in each nation for implementation of the Guidelines and the corresponding NICE Quality Standards on Endometriosis ... to provide a baseline for endometriosis diagnosis, treatment and management”.

The group recommended that

“As a first step, a gap analysis of endometriosis services should be undertaken”,

and it noted the need for

“Recognition ... that more needs to be done to ensure inclusivity and equality of access to ... services.”

Most importantly, the report highlights that raising awareness is crucial. That is what we are doing today, and it is what my colleagues are doing—I am grateful for that. Finally, the report states that there needs to be a better system in place, as

“Those with endometriosis have to recognise that what they are experiencing are symptoms, in order to seek help.”

Moving to devolved action in Scotland, I note that work is under way to help people with endometriosis, but there is still a long way to go, which is why we are talking about the subject today. Apparently, three specialist endometriosis centres exist and were planned to provide specialist endometriosis coverage for the whole of Scotland. However, the services that they provide are currently being commissioned as local services to meet local capacity, and people have found it difficult to get a referral if they live in a different health board area. For some, that can mean that they have no access to specialist treatment even if they are suffering from deep endometriosis.

The Scottish Government’s document “Women’s Health Plan: A plan for 2021-2024”, which was published last year, includes a number of actions to

“improve access ... to appropriate support, speedy diagnosis and best treatment”,

and work is under way, as part of the modernising patient pathways programme by the centre for sustainable delivery, on developing a pelvic pain pathway for Scotland, starting with endometriosis. However, the fact remains that in Scotland, our wait time is eight and a half years. That is totally unacceptable for people like my constituent, who is suffering so dramatically from the condition. I welcome the Government’s commitment to

“reduce waiting times for diagnosing endometriosis ... to ... 12 months”

within the current session of Parliament. However, I fail to see that there is a robust pathway to achieve that, given the lack of data and detail from the Scottish Government.

Through lodging parliamentary questions, I have found that there is a total lack of information at Government level on endometriosis. I have found that

“Information on the endometriosis waiting times in each NHS board is not currently available.”—[Written Answers, 1 July 2021; S6W-00781.]

I have also found that

“The Scottish Government does not hold information on how many staff are employed in each of the three centres in Scotland or what the average waiting time is for each centre.”—[Written Answers, 1 July 2021; S6W-00783.]

Furthermore, the Scottish Government is

“unable to identify the total number of people who have been diagnosed with endometriosis in the population from routine healthcare data, and therefore cannot provide figures for the required breakdowns (NHS board, age cohort and ‘deep endometriosis’).”—[Written Answers, 1 July 2021; S6W-00787.]

If we are seriously to tackle the disease, we need the right information. I urge the Scottish National Party Government to give us a detailed plan and timeframe.

I want to mention in particular Tao McCready and Becky Leigh, and thank them for all their hard work in raising awareness of endometriosis. I look forward to working with them, and with my colleagues David Mundell MP and John Lamont MP, who recently took part in a debate on endometriosis at Westminster.

I thank Endometriosis UK for all its work, and I fully support its “key asks” of Government. First, it rightly points out that we need

“Faster diagnosis—Reducing diagnosis time ... to an average of four years by 2025 and under one year by 2030.”

However, the Scottish Government wants to go beyond that, and we need more detail on that.

Secondly, Endometriosis UK says that there is a greater need to ensure that there is

“a baseline in endometriosis care”,

with

“everyone with endometriosis in Scotland”

being able to

“access to care and support in line with NICE”

guidelines.

The third ask leads me on to a subject on which I do not have time to expand today—it is maybe for another day. I agree with Endometriosis UK that we need better

“Menstrual wellbeing education”,

such as

“Mandatory age-appropriate menstrual well-being education in all Scottish primary and secondary schools”.

I would appreciate it if the Minister for Public Health, Women’s Health and Sport and the Cabinet Secretary for Health and Social Care could update members on what progress, if any, has been made on those asks to date.

In conclusion, I emphasise that more attention must urgently be focused on reducing endometriosis waiting times—

Ms Hamilton, could you please conclude? Thank you.

Yes. Together, we can fight this horrendous disease and help women to live better lives through research and better treatment, and by meeting those targets.

I call Emma Roddick, who is joining us remotely—I hope.

Excuse me, colleagues. We have Ms Roddick—excellent. You have up to four minutes, Ms Roddick.

[Inaudible.]

Sorry—I do not know whether you can hear me, Ms Roddick, but I ask you to pause for a second, as we cannot hear you.

We will go to Sandesh Gulhane and then seek to come back to Ms Roddick. Apologies for that.

17:28  

I begin with a declaration of interests, as I am a practising general practitioner. However, I have a further interest to declare that does not appear in my entry in the register of interests: I am a man. I do not know what a period feels like, nor do I know what endometriosis feels like, but, as a GP, I can tell members that my patients really suffer.

We have heard Rachael Hamilton tell us that 10 per cent of women have endometriosis. That is 1.5 million Scots who have chronic pelvic pain; period pain that affects their daily life; deep-rooted pain after sex; cyclical gastrointestinal symptoms, which is pain on passing bowel motions on a cyclical basis; cyclical urinary symptoms, which is blood or pain when passing urine; and infertility. The risk factors for developing endometriosis are early periods, not being pregnant and a family history of the condition.

I want to tell members briefly about a patient of mine—a working woman who basically had to give up her job. The reason was that, every month, she had to take time off work because she could not cope with what was going on. She was crying and she was depressed, and she was given multiple different painkillers and antidepressants. She was unable to get pregnant. Members will see that there is a vicious cycle—every single thing that I have mentioned makes the next thing even worse. We treated her with painkillers, and eventually we realised the diagnosis and she ended up in surgery and had laser treatment. She actually saw some improvement.

I have read out the symptoms to members, and it seems pretty obvious that endometriosis would be the diagnosis, but each symptom came to us separately at a different consultation. These are some of the problems that we experience. Women might not seek help, and that is a concern.

To go back to my declaration of interest as a man, I simply could not put up with the symptoms that I have described. I do not understand how women can put up with them, but they do. It is because they are not believed. It is because they turn up and tell GPs and health professionals that they have problems, and they are dismissed. It is unbelievable that that happens now, but I know that it does; I have given an example from my own practice of when it has happened.

I want to say this to anyone who is out there listening and to any women who are suffering with the symptoms that I have described: please do not suffer in silence. Come forward and see your GP, and—most important—keep a diary of your symptoms, because, if you can present us with a diary, that makes it more obvious. When I read out the list of symptoms just now, the diagnosis was more obvious, so I ask anyone who is listening to please do that. Come and see us, and do not suffer.

I will now try to go back to Ms Roddick. I am assured that she is online and ready to go and that the broadcasting is going to function—or perhaps not, as the case may be.

Ah, there is Ms Roddick—excellent. You have up to four minutes, Ms Roddick.

17:32  

Thank you, Presiding Officer and the information technology team.

I thank Rachael Hamilton for bringing the debate to the chamber. I am glad not only that endometriosis is being discussed in the chamber again but that it is being discussed outwith an awareness month. We need people who are seeking assistance with what is a chronic and often excruciating condition to be treated with respect and due pace, regardless of when they present, which means that greater awareness is needed all year round—in particular, among health professionals, employers and schools.

Awareness is improving, and we have to acknowledge the work that has been done in getting us to that stage by many incredible third sector organisations, including Endometriosis UK. I meet regularly representatives from the organisation’s north Highland support group, and I was told this morning that it has now reached 129 members.

I discussed with a fellow endo warrior a number of stories, including the story of one woman who had to give up her job while waiting for surgery and another who found that, when she finally got surgery, many around her cried with relief. It really is a big deal that many people in the Highlands and Islands will now be aware of endometriosis before they are diagnosed with it, as they will know where to go to get peer support, whether in dealing with the NHS or understanding their condition, or simply to find someone else who understands how much it can affect their life.

Endometriosis does not mean just painful periods—it can mean debilitating pain throughout the month. It can mean loss of employment, loss of organs, loss of fertility and so much more. It means that, even when you are on effective treatment, an unrelated but familiar cramping feeling can cause intense terror and trauma. Just today, a woman had to cancel a meeting with me because simply travelling yesterday had caused a flare-up. Endometriosis is not something that affects just a few people. Even the estimate of 10 per cent that is quoted in the motion amounts to one in 10 women, and we also have to remember those who are not included in the statistics.

There are people being turned away with more paracetamol every few months and people presenting to accident and emergency to be put on morphine just so that they can breathe properly, but they are not getting follow-up. Both of those situations used to be regular experiences for me.

We have to remember that there are still thousands of doctors who brush off cries for help and tell teenagers that it is normal to be curled up on a bathroom floor in agony, vomiting and passing out, with the clear underlying belief that it is basically a case of hysteria or a dislike of physical education. I was glad to hear recognition of that from a GP in the chamber.

The issues that I outlined have a devastatingly isolating effect across the board, but they are intensified for people who live in rural areas or far from the nearest hospital that can offer treatment. I am aware in particular of a number of women in the rural Highlands and Caithness who, after what we all know is a long wait, have to make preparations for a lengthy trip to Raigmore hospital for a hysterectomy or other procedure. Childcare is arranged, cover is agreed at work, petrol money is exchanged and a last-minute cancellation of that appointment can feel like the whole world has fallen apart.

Like most members who have spoken before me and who will speak after me, I am heartened by the women’s health plan and the commitment to reduce the time that it takes to make a diagnosis. However, alongside that, we have to ensure that a diagnosis means treatment, not years or even decades of people waiting for a solution while in pain and sacrificing the life that they want to live.

Once again, I thank Rachael Hamilton for lodging the motion. I look forward to hearing the minister’s response and commit to joining Rachael Hamilton and others in keeping up the pressure for endometriosis support.

17:36  

I thank Rachael Hamilton for bringing such an important debate to the chamber. I know that she has championed the cause for many years.

As we have heard, endometriosis is thought to impact a staggering one in 10 women worldwide. Endometriosis UK highlights the point that its impact can be seen from puberty to menopause and, in some cases, can last a lifetime. The painful, often debilitating condition impacts many women in our country and across the globe, but awareness of it remains low and it is not given the prominence that it deserves.

Tonight’s debate will take steps towards raising awareness of endometriosis, but we must go much further: we must listen to people who have lived experience of the condition and to experts such as those at Endometriosis UK so that we can deliver what they believe is necessary to improve the day-to-day lives of people who live with the condition now, and of those who might live with it in the future.

That means that members such as me must hold the Scottish Government to account and ensure that it reaches its target of reducing the shockingly high diagnosis time of more than eight years to less than a year. We must also fight for equal access to proper care and ensure that all women have a central point of support that can provide assistance related to the impacts of endometriosis.

I welcome Maree Todd’s work on, and commitment to, the women’s health plan. Although progress has been made on it, we must acknowledge that much more needs to be done. It is fair to say that making faster progress would benefit the women who live with the condition.

We must also commit to providing age-appropriate menstrual wellbeing education. Only by removing the stigma surrounding the discussion of menstrual wellbeing will we raise awareness and tackle the issues that are staring us in the face.

Endometriosis is a condition in which tissue similar to that in the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. Its main symptoms include painful periods; pain in the lower abdomen, pelvis or lower back; pain during and after sex; difficulty becoming pregnant; and discomfort when going to the toilet. It causes many women a long time of suffering and social and mental health problems.

One of the main difficulties that is highlighted by people with lived experience of the condition, Endometriosis UK and a wide range of healthcare professionals is that such symptoms can be attributed to many other conditions and illnesses. The condition is often missed, or it takes a long time to be diagnosed. It is therefore vital that we call for greater research into the presentation and causes of endometriosis, so that women can be provided with high-quality treatment at a much quicker rate than at present. We must also hope that research produces alternative treatments and, at some point in the future, a cure.

As we have heard, a significant amount of work is already being undertaken in our communities by individuals, groups and organisations. I have had the pleasure of meeting groups, such as the group in the Scottish Borders, that are doing a tremendous amount of work to support those who live with the condition and to hold us decision makers and those in the health services to account. We must commend the work that individuals and organisations do, because, without their support, advice and advocacy, many more women would have faced the difficulties alone.

I once again thank Rachael Hamilton for highlighting the importance of raising awareness of the condition, and I thank members who have spoken in the debate. I hope that this debate is the start and not the end of a heightened focus on the condition in the Parliament and beyond.

17:40  

I congratulate Rachael Hamilton on securing this important debate and pay tribute to the women and girls across Scotland who suffer from endometriosis, many of whom will be awaiting a diagnosis and are not yet aware that what they are feeling is a condition that they should be diagnosed with and treated for.

We are all grateful to Endometriosis UK for its research and campaigning and to support groups. I commend the quite formidable endo warriors whom I have known for their indomitable spirit over the years—they even persuaded me to join one of their marches through Glasgow. It is vital to continue to raise awareness and to drive through the changes that we want to see.

Five years ago, I led the previous dedicated endometriosis debate, during which many—primarily male—contributors admitted that they had no prior knowledge of the widespread but little-known disease of endometriosis. However, it is 21 years since Annabel Goldie first raised the important matter in Parliament. Now that Elaine Smith has retired, I am the last remaining member who spoke in that debate more than two decades ago. The make-up of the chamber has changed beyond recognition, but can we say that the treatment of endometriosis sufferers has also changed? Every endo warrior, clinician or even MSP will agree that the answer to that is, “Possibly, but at a glacial pace.”

The purpose of my debate was to press the Scottish Government to establish a third accredited endometriosis unit in Scotland. Following much post-debate discussion and deliberation, that unit was established in Glasgow three years ago with the necessary specialist staff to serve the women of the west of Scotland, following the early development of units based in Aberdeen and Edinburgh. I thank Aileen Campbell and Jeane Freeman for all their hard work and tenacity in taking that forward. However, more units, from Inverness to Ayrshire to Dumfries, are, of course, essential.

The opening of the new unit was followed by the Scottish Government’s women’s health plan, which was a UK first and which aims to reduce the average length of time that it takes for an endometriosis diagnosis from an often fraught, painful and drawn-out average of eight and a half years. Much work is required to cut that to under a year by the end of the current parliamentary session. The Scottish Government was right to have set such an ambitious target, based on clinical feasibility. We now look forward to a more detailed description of exactly what steps will be taken and when. I know that we will receive more detail in June, when more significant headway will have been made in gathering information. I hope that we will also hear about progress in the ministerial response today.

Information is crucial, and I know that many colleagues will agree that communication is a hugely important factor to constituents who suffer with endometriosis. That is why we must normalise talking about endo, collect accurate and relevant data, publicise what we have and communicate better.

Currently, a search for “endometriosis” on the Public Health Scotland website returns zero results. In trying to find the menstrual wellbeing toolkit on the Royal College of General Practitioners website, I found that the page was not working. Those basics must be fixed if we want endometriosis patients to know that they are valued and are being taken seriously.

I know a number of women with endometriosis. From what I understand from them, endometriosis is much more than physically painful. As we heard from Emma Roddick, it is mentally draining for a woman to feel that she has to tell her story over and over again, as if she is being doubted. Losing focus at work because of the constant pain, frustration and uncertainty and the general quest for answers is exhausting.

Does Kenneth Gibson agree with me, as a man, that, if 10 per cent of all men were in the situation that 10 per cent of all women are in, something would have been done long ago and that that adds to the urgency of the action that we must now take for Scotland’s women?

I agree with Mr Kerr on that. We all have a mother, and many of us have sisters, daughters, a wife or partner and female friends. It is absolutely critical that such a devastating disease is addressed with greater urgency. It must be absolutely unbearable for sufferers. As Sandesh Gulhane said, I do not know how women get through it, but, of course, they must.

No one denies that endometriosis is idiosyncratic and notoriously difficult to diagnose and treat. I do not believe that any of us hold unrealistic expectations about that, but it is now a matter of urgency that women and girls are spared the long and arduous path that so many have had to navigate before them.

Let me emphasise once again that one does not need to suffer from endometriosis to recognise that too many women are suffering too much and for too long. We can all offer support, listen, campaign to raise awareness, and ensure that women are being heard and receive a better service. I know that I will do that. To anyone who is awaiting a suspected diagnosis or treatment, I say please know that faster help and a better experience are on their way. There are hundreds of people, including elected representatives of all parties, who care and are working to improve the service that you receive. The Scottish Government’s women’s health plan contains a firm commitment to you, so let us look forward with determination to its being fulfilled.

Because of the number of members who wish to speak in the debate, I am minded to accept a motion without notice, under rule 8.14.3, to extend the debate by up to 30 minutes. I invite Gillian Mackay to move the motion.

Motion moved,

That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Gillian Mackay]

Motion agreed to.

I call Beatrice Wishart, who joins us remotely.

17:46  

I congratulate Rachael Hamilton on securing this important debate. So much has already been said about the impact that endometriosis has across all aspects of life, but I make no apology for repeating some of what has already been highlighted today.

I want to start by outlining exactly what is at the heart of this discussion: the lives of women and girls. Endometriosis is a condition in which tissue similar to that in the lining of the womb starts to grow in other places, such as ovaries and the fallopian tubes. Symptoms include, among others, painful or heavy periods, painful bowel movements and pelvic pain. An estimated 1.5 million women in the United Kingdom are affected, which is similar to the number of women who have diabetes.

However, as we have heard, it takes an average of eight and a half years to receive a diagnosis, which means eight and a half years of pain, of missing out, of uncertainty and of explaining. How tiring must all of that be? Relationships break down because the pain and struggle are too hard to comprehend. There is the misogynistic dismissal of so-called women’s issues and people saying that it is just painful periods or, even worse, that it is perfectly normal for women to experience pain.

There are long waiting lists and a postcode lottery for treatment. There is a serious problem with delays in getting an initial appointment with a consultant, and Covid has only made the long waits even longer. Non-urgent appointments have been delayed because of Covid, but, for patients, endometriosis is not non-urgent.

One person told me that, although their GP has been good, before being referred to a consultant, their daughter had to go through various other options to rule out cysts, irritable bowel syndrome and food intolerances. More than a year after their GP’s referral, they are still to receive an appointment.

I have also been told by women that endometriosis has made them infertile, and how the inability to have children has affected their marriages. As many as 30 to 50 per cent of women who are affected by infertility have endometriosis.

I have heard stories of women spending years on painkillers that do not help. One woman had to have an ovarian tumour removed, but it turned out to be not cancer but endometriosis. The tumour was the size of a small orange. She eventually had a full hysterectomy after years of struggling with chronic pain.

The Scottish Government’s women’s health plan is set to directly address endometriosis. We must ensure that the plan improves lives and shortens waiting lists. Endometriosis has no definite cure, and the cause is still unknown, so we need to support research to better understand the condition and develop more treatments.

As we have heard, support is available, including from the north Highland support group for Endometriosis UK. I met its development officer Kirsteen Campbell, as the group’s support network includes Shetland. A midwife and former constituent of mine lived with chronic pain for years before being diagnosed and starting treatment for endometriosis. With the help of the charity, she started a petition for menstrual wellbeing to be taught in all Scottish schools. It is important for both boys and girls to learn how female bodies work so that we can all better understand and support those with conditions such as endometriosis, polycystic ovary syndrome and premenstrual dysphoric disorder. Those medical terms will rightly sound mystifying and scary to many, so, like my former constituent and Endometriosis UK, I want to encourage openness about what is and is not normal for those who are menstruating.

Unfortunately, too many people are led to believe that their debilitating symptoms are something to put up with and so they end up spending too many school days in bed suffering from intense pain. If our young girls are forced to take one week off every month with debilitating pain, they will miss out on much of their education and be radically behind their schoolmates.

Encouraging openness and breaking down taboos around women’s health issues so that women who are affected know when to seek help is important. Misconceptions need to be addressed and medical staff need training to spot the signs of endometriosis sooner. Plainly, we need to do better than averaging eight and a half years for a diagnosis for endometriosis but I am sure that, working together, we can make progress.

17:50  

I thank Rachael Hamilton for bringing this important debate to the chamber and highlighting a condition that affects many women in Scotland, including me.

I have endured endometriosis all my adult life, resulting in chronic pain and, at times, misery. I sought help for many years, but the pain that I experienced was generally dismissed as normal. One day, in my late 30s, the pain reached a point such that I collapsed at work, was taken to A and E and finally received the support and diagnosis that I needed. I had endured 15 years of pain without an answer. I do not want any other woman to go through what I went through.

The striking thing about the disease is the sheer number of women who are suffering right now and do not know it. As Rachael Hamilton noted, one woman in 10 has endometriosis. That is a huge number. A survey for an all-party group inquiry into endometriosis in 2020 found that, in Scotland, prior to diagnosis, 61 per cent of people with endometriosis had visited their GP 10 times with symptoms, 43 per cent of people had had five hospital appointments and 55 per cent had been to A and E.

Stacey, a young woman from Fallin in Stirling, battled endometriosis from the age of 13. Her pain was so unbearable that she would collapse in class and be sent home. Stacey often felt that the teachers did not believe her. In a bid to ease her pain, she eventually had a hysterectomy aged just 25. Now, Stacey is 34 and still deals with regular and painful symptoms. She hoped that the hysterectomy would help, but it has not. She now has no cervix, fallopian tubes, ovaries or uterus, so she feels extremely fortunate that she managed to have her children before the treatment.

Stacey’s story and those of many other women underline the point that awareness of the condition is critically low. Delays in diagnosis mean years of physical and mental distress and, if the condition is left untreated, might result in infertility. We must ask ourselves the difficult question why something that is so common and so destructive is still so regularly dismissed or undiagnosed. Having as much pain as I have described is not normal. Attitudes need to change. It was very good to hear Sandesh Gulhane’s words. GPs are often a woman’s first port of call.

I very much welcome the commitment to reducing waiting times for diagnosis from more than eight years to under 12 months by the end of this session of the Parliament and the fact that the Government is making that issue a priority. Tragically, the fact remains that, even when someone is diagnosed, there is no cure. The treatments that I was offered were going on the pill, staying on the pill and having a baby. The first time that I was asked if I wanted to have a baby I was 18. I was a student, had no partner and thought, “Hmm, that is not something I will be considering at present.”

It begs the question why treatment for something that affects so many people is still so lacking. I look forward to hearing how the Scottish Government intends to meet its diagnosis targets, how endometriosis will be treated, and how health inequalities in general will be challenged.

As a nation, Scotland can be proud of its commitment to equality, so let us make endometriosis treatment another thing of which we can be proud.

17:55  

I thank Rachael Hamilton for securing this important debate. As we have already heard, around one in 10 women suffers with endometriosis. It can affect fertility, cause chronic pain, depression, fatigue and severely impact the quality of life of those who suffer with the condition.

The actual cause of endometriosis is unknown. There are several potential risk factors or triggers, but none of them fully explains why some and not others develop the condition. It can last between puberty and menopause or for much longer.

It is estimated that endometriosis costs the UK economy £8.2 billion a year. Many will feel the financial impact through lost days of work, or not being able to work at all. For many who have endometriosis, the quality of life impacts will be severe. The mental health impact of endometriosis needs more recognition and better support. The current average time to diagnosis is eight years, which, as we have all recognised, is too long. I welcome the commitment in the women’s health plan to reduce it to less than 12 months.

There are many gynaecological conditions that have similar symptoms and lengthy waits before diagnosis. To ensure that we get everyone the correct help and treatment, we need to reduce diagnosis times across the board, and raise awareness of the specific conditions. In previous women’s health debates, many of the MSPs who spoke noted that, at some point, they felt that their symptoms were not taken seriously. We need to address why that is happening, otherwise those who are suffering will continue to not come forward to raise their symptoms.

I take the opportunity to thank the MSPs and campaigners who worked to bring the condition to the forefront in the previous session. As a result, we have seen wider recognition, and I am sure that many people are now seeking support for their symptoms after seeing that others are also experiencing them. It is important that we continue to talk about our experiences and break the stigma around talking about gynaecological issues and the symptoms that they cause.

Rachael Hamilton mentioned menstrual health, but she did not have time to elaborate further, so I hope that members will indulge me for briefly covering another gynaecological issue. Previously, I have asked about ensuring that polycystic ovarian syndrome is appropriately recognised in the women’s health plan. On average, it takes three years for a diagnosis, and those seeking help will see three doctors before being diagnosed. Similar to endometriosis, without interventions, symptoms can deteriorate and serve as a risk factor for other conditions, such as heart disease. Symptoms can include irregular periods, fertility issues, weight gain or issues losing weight, and hirsutism, which is excessive body hair growth that is usually dark and coarse. In a world in which appearance is routinely judged, that can severely impact women’s confidence and their mental health.

Often, those seeking help are simply told that losing weight will resolve their symptoms, with no recognition of the increased insulin resistance that can come with PCOS. One of the many tests for diagnosis is the test for different hormone ranges. For someone who suffers those symptoms to be told that they cannot be given a diagnosis because their hormones are borderline okay can leave them feeling adrift and helpless. I am one of those who is seeking a potential PCOS diagnosis, and alongside those who are raising awareness of treatment standards of endometriosis, I want to do more.

To those who are struggling with symptoms of endometriosis, PCOS or any other gynaecological condition, I say that you are not alone. Your weight or your body hair does not define you. Choose to embrace it and choose to deal with it. Do not let society shame your body—it is the one that gets you around during the day. Whether you have hair on your arms or face, or whether you have a period, it does not reduce your worth.

We need to break down the societal stigma as we work to ensure that our health services are able to diagnose and treat appropriately in a timely manner. We need to allow GPs time to do the research and update their knowledge. The entire health service is under extreme pressure, and it would be negligent not to acknowledge the impact that the pandemic will have on our ambitions for treatment times. That does not mean that we should not be striving for quicker diagnosis now, but it is important to be realistic.

I thank Rachael Hamilton for securing the debate, and I thank all colleagues who have shared their stories this evening.

I call Monica Lennon, who joins us remotely.

17:59  

It has been a pleasure to listen to the debate so far. I congratulate Rachael Hamilton on securing it and attracting so many members to take part.

I was struck by Emma Roddick’s observation that it is good to have this debate outwith endo awareness month. We have to continue to do that. If anyone is listening who has an interest because they live with endo, whether or not it is diagnosed, it is important that they do not just feel encouraged but see that we are determined to take action.

Like other members, I welcome the women’s health plan, which is a positive development in Scotland that I hope will represent a real breakthrough. My party campaigned for such a plan. We now need to consider how we will achieve the important ambition of reducing the waiting time for diagnosis from around eight and a half years to 12 months by the end of this parliamentary session.

When the minister responds, I hope that she will be able to give us a little more detail and reassurance in that regard, because none of us wants to build up people’s hopes and expectations, only for them to continue to be disappointed throughout their lives. That is key.

I have been reflecting on some of the things that I was involved with during endo awareness month in March last year. Evelyn Tweed shared a personal story about being told as a young woman—a teenager—just to get pregnant. That reminded me that I tweeted that it is appalling that women are still being told to get pregnant as a way of treating their endometriosis, after hearing, on BBC Radio Scotland, young women in their 20s share their experience of that happening.

It is good that Dr Sandesh Gulhane is taking part in the debate. He will probably want to share what he has heard tonight with general practitioner and clinician colleagues. We have first-class endometriosis specialists and clinicians in Scotland, but we are not cascading the knowledge and good practice enough and, too often, women and other people who experience endometriosis, including trans and non-binary people, are just not believed.

That brings me to a point that other members made about menstrual health and wellbeing education. I know from correspondence that I had with Jeane Freeman and others in Government that the Government takes the view that it cannot mandate things on the curriculum. However, we have to get serious about working with schools to ensure that young people have all the information and tools that they need at an early age.

I join Rachael Hamilton in paying tribute to Sir David Amess for all that he did in Parliament to shine a light on endometriosis. The all-party parliamentary group does important work. I am the chair of the Scottish Parliament’s cross-party group on women’s health, and I hope that we can continue to work together. It was Kenny Gibson—who gave us a pocket history of previous debates in this Parliament—who encouraged me to set up the cross-party group on women’s health, and I thank him. I hope that more men will get involved.

We should focus on the things that we get right in Scotland. Tomorrow marks the first anniversary of the Period Products (Free Provision) (Scotland) Act 2021 receiving royal assent and making it on to the statute book. I thank everyone who lives with endometriosis for sharing their experience in the context of the Period Products (Free Provision) (Scotland) Bill, which was about not just ensuring that we improve access to period products, but sharing people’s stories so that we can get it right in the workplace, in education settings and here, in the Parliament.

I encourage my MSP colleagues to become endometriosis-friendly employees, as I have done. It is really easy to do and they can take this important conversation into their constituencies or regions. They can get in touch with Endometriosis UK, which will tell them how to sign up.

I again thank Rachael Hamilton. It is great that everyone has taken part in tonight’s debate. I hope that we will hear from the minister that there is a plan to put these important ambitions into practice.

18:04  

I thank Rachael Hamilton for lodging this important motion. I welcome the opportunity to respond on behalf of the Government. Members from across the chamber have made really powerful contributions, and I am grateful to hear them. In particular, I welcome the personal contribution from Evelyn Tweed. Her story will resonate with so many people. It is such a powerful thing to use personal experience to make progress in this space, so I thank her for that. I also thank Gillian Mackay for raising the almost taboo issue of stigma, and for speaking so powerfully about it. She highlighted clearly why it is difficult to make progress on these issues.

I am grateful to Beatrice Wishart for mentioning the north Highland endometriosis group and my constituent Kirsteen Campbell. The women involved in that are the most incredible group of women. I have met them and know that they are absolutely unafraid to speak truth to power, and let me tell members that I am grateful for it.

Endometriosis has a devastating impact on many women in Scotland. It is estimated that the condition affects 1.5 million women in the United Kingdom, but it can be difficult to diagnose, in part as a result of the diverse symptoms and the lack of non-invasive diagnostic procedures. The symptoms can be debilitating and can impact on all aspects of women’s lives, including their relationships, work, education and mental health.

I am really proud to say that, in August 2021, Scotland became the first country in the UK to publish a women’s health plan and that we are committed to improving access for women to appropriate support, speedy diagnosis and best treatment for endometriosis.

As the minister knows, Rachael Hamilton cannot intervene in this debate, so I am a proxy for her. Is the minister confident that the Scottish Government’s promise to reduce waiting times for diagnosis from 8.5 years to less than 12 months is achievable in the lifetime of this Parliament?

I am very confident that we will make progress on the issue. I join with all the members who have contributed in recognising the barriers to receiving support and the long waiting times for diagnosis. We are absolutely committed to reducing the time to diagnosis and ensuring that the best possible advice and support are available for women throughout the diagnostic process.

We have been taking positive steps to improve the diagnosis and wait times. I am pleased to share that a new endometriosis care pathway is being developed by the modernising patient pathways programme, adapted from the NICE guidelines for endometriosis. That pathway will support healthcare professionals to recognise the symptoms of endometriosis and will provide a timely standardised referral care pathway for women with suspected endometriosis to secondary and tertiary care for those who need it. The pathway will enable women to be more informed and empowered to make choices about treatment and management. Alongside the pathway, Endometriosis UK is developing a leaflet to explain the process for diagnosis, which will be available online and for GPs to give to patients who have symptoms of endometriosis but have not yet received a diagnosis.

We recognise that reducing the time to diagnosis is not, by itself, an effective measure or demonstration of improved health and wellbeing outcomes. We will continue to work closely with Endometriosis UK and Public Health Scotland to analyse the data to help to indicate the reasons for blockages to treatment and support at primary care level. As Rachael Hamilton mentioned, in order to establish a baseline to measure progress that will be meaningful for all women and their families, Endometriosis UK is producing a report that will provide an overview of the data on service provision in Scotland and make recommendations. I look forward to receiving the findings of that report, which will be available shortly, and I give members my assurance that those findings will be acted on.

I want to pause for a moment to pay tribute to Sir David Amess, who was the chair of the all-party parliamentary group on endometriosis from the time that he launched it in 2018. He worked tirelessly to raise awareness and improve services for those living with the condition. His dedication and determination during his time as chair led the APPG to undertake an inquiry on the improvements that need to be made to ensure that those with endometriosis receive the care and support that they deserve. The actions in our women’s health plan reflect those recommendations. We are aligned in our vision to drive down diagnosis times and to improve access to care.

I assure members that work is going on to deliver the actions in the women’s health plan and to take the necessary steps forward to improve health outcomes for women. We will soon convene the first meeting of the women’s health plan implementation programme board. To ensure that progress is achieved at pace, a detailed implementation plan will be published by spring this year, and the first progress report will be published in autumn this year. Importantly, we will continue our lived experience engagement to ensure that women’s voices and experiences shape the implementation of the plan.

We will strengthen collaboration across the regional specialist endometriosis centres and will use those hubs to support local delivery across health boards. We will continue to build collaborative relationships with endometriosis third sector organisations and support groups in order to help to deliver the women’s health plan actions. We will work with Public Health Scotland and partners to analyse the available quantitative data to allow us to identify the gaps in national data and where improvement is required.

While being mindful of the impact that the pandemic continues to have on health boards, we will gather local qualitative data to help us to understand immediate pressures on waiting times for out-patient and in-patient endometriosis care. We will continue to support the implementation of the endometriosis care pathway and we will explore opportunities to partner with Endometriosis UK and other lived experience groups to raise awareness and consider ways to support the diverse needs of people with endometriosis.

I will close the debate by thanking those who have contributed to it. I am listening. We have taken positive steps, but I know that there is still a great deal more to do. I assure members that we will continue to work with our partners to implement the actions in the women’s health plan and to bring about real and transformational change for women with endometriosis. I end by thanking those with lived experience who have helped us to shape the actions in the women’s health plan and who continue to share their stories with us, so helping us and everyone out there to understand what we could achieve within the lifetime of the plan.

Meeting closed at 18:12.