Meeting of the Parliament

Meeting date: Tuesday, February 28, 2017

Official Report 842KB pdf

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Endometriosis Awareness Week

The next item of business is a members’ business debate on motion S5M-03354, in the name of Kenneth Gibson, on the “It’s OK to talk. Period.” campaign. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes that Endometriosis Awareness Week 2017 will run from 6 to 12 March and have the theme, It’s OK to Talk. Period.; recognises that the aim of the week is to draw attention to the impact of the condition on the lives of the 10% of women of reproductive age who are living with it, including what it understands is a significant number in both Cunninghame North and across Scotland; believes that it can be exceptionally difficult to diagnose, with the average time for diagnosis after the first symptoms are experienced being 7.5 years; acknowledges that this year’s theme was chosen to specifically encourage women and girls to seek medical help if they experience painful, heavy, difficult or irregular periods, as this can be a sign of the condition; appreciates that half of all women with it experience the first symptoms in their teenage years; is aware that it causes physical pain and can lead to infertility and depression; believes that, although endometriosis is the second most common gynaecological condition, there is not enough debate and awareness about it, and notes the view that urgent work is required to see what can be done to achieve both earlier diagnosis and better treatment options for the many women in Scotland and beyond with endometriosis.

17:02  

It is a privilege to open the debate and I am grateful to all who signed my motion, which allows us to raise awareness of endometriosis. I welcome the Glasgow endometriosis group to the public gallery, and in particular Anne Devlin, who has been in contact with me regularly in recent months regarding endometriosis and the need to improve specialist treatment and services. She inspired me to seek the debate, which I hope will reassure sufferers that the Parliament recognises the importance of endometriosis.

The first and only previous time that a parliamentary debate was dedicated to endometriosis was 16 years ago—on 28 June 2001—and the debate was secured by Annabel Goldie. It was not even held in this chamber, as that was three years before this building was completed. Of the five speakers in that debate, only Elaine Smith and I have not retired—given our youth, that will come as no surprise.

On Saturday 25 March, thousands of men and women will take part in the fourth worldwide endometriosis march in cities around the world, including Glasgow, to raise awareness of endometriosis. Next week—6 to 12 March—is endometriosis awareness week, and this year’s theme is “It’s OK to Talk. Period.”, although I disagree with the word “okay”, because it is necessary that we talk and it is vital that we act now.

Endometriosis has to be the condition with the lowest profile in relation to the number of women who are affected by it. I cannot help thinking that the situation would be very different if men suffered from it, too. Endometriosis is the second-most common gynaecological condition in Scotland. According to Endometriosis UK, about 10 per cent of women of reproductive age are affected, which means that hundreds of women in my constituency of Cunninghame North are affected. Further, studies have estimated that between 30 and 50 per cent of women who are dealing with infertility suffer from endometriosis.

The word “period” in this year’s slogan serves as more than a punctuation mark. It was included to make young girls and women aware that not all period pain is normal. When endometrial tissue that should line the womb grows elsewhere in the body, it still reacts to the menstrual cycle each month and breaks down. As that tissue has nowhere to go, it leads to inflammation and the formation of scar tissue. That is painful and debilitating and, as well as its physical effects, it has been known to lead to depression, anxiety and fear of intimacy. Women who live with endometriosis might find their careers impacted.

During what is already a confusing time for many teenage girls, not all of them are aware of the extent to which pain and discomfort are normal or could be a sign of endometriosis. That illustrates why so many women do not even know that they have it. According to Endometriosis UK, the average time for diagnosis after the first symptoms are experienced is seven and a half years. Urgent work is therefore required to achieve earlier diagnosis and better treatment options.

Every woman’s condition is different, and there is no one-treatment-fits-all approach. The suffering of one of my constituents was relieved only after a hysterectomy, but she knows of at least three others for whom that was not the solution. Every endometriosis sufferer requires specialist and tailored treatment for their endometriosis, and that can be provided effectively only by a team of specialists, preferably in accredited endometriosis units.

There are only two accredited endometriosis units in Scotland, compared with 47 in England. For a country with the geographical characteristics and population of Scotland, that is simply not enough. It is sad to say that, as the only specialist units are located in Aberdeen and Edinburgh, the majority of endometriosis patients in Scotland are not being readily provided with the required specialist care. It is much more difficult for women who live in the west of Scotland to access specialised care than it is for women in the east of Scotland or in England. It is up to the Scottish Government to address that health inequality. Even if one of my constituents was referred by a gynaecologist to the Edinburgh unit, they might have to forego treatment because of logistical or financial issues. That goes against everything that the Government stands for.

I wrote to the Cabinet Secretary for Health and Sport about the issue last June and was pleased to be informed that an accredited endometriosis centre for the west of Scotland is in the pipeline. That followed a pledge in April 2014 by the then Cabinet Secretary for Health and Wellbeing, Alex Neil, that the Scottish Government would support a review of how endometriosis services are delivered.

Endometriosis UK and research staff at the University of Edinburgh put forward proposals that complex endometriosis would be best managed by multidisciplinary teams working in accredited specialist centres across Scotland. A short-life working group was then established to consider those proposals. It brought together a range of stakeholders to consider evidence on current service provision and how that could be improved. In 2015, the group’s recommendations included the need to establish a third specialist centre in the west of Scotland that was accredited by the British Society for Gynaecological Endoscopy.

The Cabinet Secretary for Health and Sport has informed me that NHS Greater Glasgow and Clyde is leading on developing a proposal to set up a specialist endometriosis centre for the west of Scotland. I understand that that work is still on-going, which makes me fear that any progress is being made very slowly—it is almost glacial. However, I have also been informed that a constituent was advised by NHS Greater Glasgow and Clyde that implementation might start later this year. We remain hopeful that everything will come together in due course and I hope that the Minister for Public Health and Sport will enlighten us.

Although I am pleased that the Government did the right thing in being the first, nearly three years ago, to put endometriosis on its agenda, in 2017 my constituents and many others still do not have a centre that they can easily go to. I am unsure about what progress has been made since the previous debate 16 years ago on serving the needs of women who live with endometriosis, other than the actions that I have mentioned. I believe that I speak for sufferers across the west when I say that that has not been enough.

A month or a year might not seem to be a long time to those who are not affected by endometriosis, but perhaps a couple of quotes from women who live with it will put that into perspective. One said:

“Great topic for Members’ Business. I suffer from it and it literally destroys at least 2 out of 4 weeks!”

Another said:

“This horrific condition has blighted my life”.

I believe that the Government will do the right thing and eliminate the health inequalities that exist for endometriosis sufferers not only in comparison with those in England but between different areas of Scotland.

I conclude by quoting what one of my constituents who is a sufferer wrote to me. She said:

“The women of Scotland need more accredited units with multi-specialist approach. As one specialist stated ‘one competent surgeon, saves countless women’. We all need to fight to END ENDO. Endometriosis needs to be history.”

It is over to you, minister. [Applause.]

I ask our visitors in the gallery not to clap or cheer, please. At the end of the debate, you will have the chance to show any appreciation—or any other response—that you might have.

17:09  

I thank Kenneth Gibson for bringing to members’ business a topic that affects one woman of childbearing age in 10 in the UK, which means that there are approximately 150,000 such women in Scotland alone.

Endometriosis has been described as a hidden disease, although it is as common as diabetes. Too few people talk openly about it, despite the devastating effect that it can have on the lives of so many women. I hope that, thanks to debates such as this one and the publicity surrounding the forthcoming awareness week, that will change. For too long, it has been a subject that has not been openly and frankly discussed. If not quite a taboo subject, endometriosis is certainly a disease that many people suffer behind closed doors.

In stark medical terms, endometriosis is not an infection but a disease, in which tissue similar to the lining of the uterus grows elsewhere in the body, such as in the lining of the pelvis, the ovaries, the bowel and the bladder. The tissue reacts to the menstrual cycle each month and also bleeds. However, there is no way for the blood to leave the body. The result can be devastating to sufferers: inflammation, severe pain, infertility, painful and heavy periods, and fatigue. Those factors can then contribute towards the onset of depression, feelings of isolation, problems with relationships and difficulty in fulfilling work and social commitments.

When preparing for today’s debate I found the story of a woman who has struggled with the condition since she was 13. As for so many women, her diagnosis was far from immediate. A variety of potential causes were suggested. The pain and fatigue around the time of her periods meant that she had to take time off school, then university and ultimately work. After having found a loving and understanding partner, she faced the additional despair of finding that she was unable to conceive.

Another sufferer is a woman from Edinburgh whose words bring home the effects that the condition can have and her determination to reclaim her life. She said:

“Endometriosis has a huge impact on my daily life. The pain is constant and I have now been in daily pain for three years. This has led to not being able to make plans as I wouldn’t know how I will feel from one day to the next. This has affected my relationships with my partner, family and friends but I have been lucky that they have all been very supportive and understanding. My work has been affected and there is a real prospect that I may lose my job due to my illness. I have come to accept that I shall be in pain on a daily basis. I try to remain positive. This debilitating, invisible disease is no longer going to control my life.”

For many others, the constant pain and the unpredictability of their lives can bring on isolation and depression. Not all women have partners, families or friends who understand how their loved one can be so debilitated and fatigued. It is vital that those people are not forgotten. They suffer, and more needs to be done to make sure that they too learn that the subject can be discussed openly, and that support is available to them.

Endometriosis groups, under the auspices of Endometriosis UK, offer a lifeline to sufferers and their families. They offer help, support and advice on how to understand and manage the condition.

It is always good to talk. I am proud that today the chamber has gone a step forward by proving that “It’s OK to talk. Period.”

17:14  

I thank Kenneth Gibson for giving us the opportunity to discuss this topic. Endometriosis is heavily underdiscussed, especially considering the range of people it affects. I am a man in his 70s, and my generation of men did not much engage in or discuss anything to do with female reproduction. Indeed, it was only after my mother’s death that I discovered that a year before I was born she had an ectopic pregnancy that resulted in the loss of a fallopian tube. Thus, the risks that she took in giving birth to me, my brother and my sister were substantial. That was just not the sort of thing that was discussed with men of my generation. Tonight’s debate is therefore an opportunity to engage men, as well as to reflect the needs of women.

Just this morning, I spoke with a young woman who has been diagnosed with the disease. She was eager to hear tonight’s discussion and grateful for Parliament’s steps in raising awareness and, we hope, furthering research to find a cure.

The idea that there is no cure for a disease that affects one in 10 women in the world is almost unbelievable in the modern age—especially when we think about the great medical advances that have been made in other areas. Yet, despite the fact that all those women live with the disease, the low number of people who have even heard of it—including myself, until the debate came up—is almost unbelievable.

Endometriosis’s impact is wider and more destructive than it looks at first glance. On the one hand, it comes with chronic pain and fatigue—and not just physical pain, as there are mental consequences, too. Fundamentally, I understand that the effect of endometriosis on one person can be quite significantly different from its effect on someone else. Some might experience a host of symptoms, while others are almost asymptomatic. Regardless of that, living with an incurable disease day in and day out is not something that any of us would wish to take lightly.

The strain of the condition does not affect just the individual who suffers from it. The friends and family of a woman who is diagnosed will also feel that strain, which the condition places on relationships and commitments in work and social lives when a woman is in too much pain to go out of the house or even to rise from bed. Frankly—and I say this with no pleasure whatsoever—those women are often keeping families going, keeping children at school and simultaneously undertaking careers.

There a number of support groups for women with the disease, where they can meet others who are suffering. Such groups are a useful outlet, I am sure. However, what would happen if we—and by “we” I mean the medical field, Governments and society as a whole—became a more proactive support group? We need to offer more.

The disease has been swept under the carpet and out of public conversation for too long. Talking about disease, especially one that is gender based, can sometimes be quite difficult, particularly for us men. I hope that mothers, wives, daughters, sisters and friends will take some comfort from the fact that at least some of the men in the Parliament are engaging with the conversation. I know women who have been diagnosed with endometriosis. I say to them that we are in their corner, cheering on the advancements that we hope will come

For many women, the fight is a silent one. However, during endometriosis awareness week in March, we all need to stand up and speak on the subject. In this area, as in so many others, we need strong women to lead us, direct us, put pressure on for new research, create new treatment options and, ultimately, find a cure.

We hope that this debate will raise awareness. Let us keep talking about the condition. I love talking, so that is easy for me; for others, it might be more difficult, but I encourage them to do so, even if that is not something that they would do naturally. Our goal should be to find the day when no woman has to fight against her own body.

17:18  

I am grateful to Kenneth Gibson for bringing this debate to Parliament so that we can highlight endometriosis awareness week. I am pleased that the key theme of this year’s awareness week is focused on encouraging women to talk about their periods, particularly those who experience painful, heavy, difficult or irregular periods, which can be a sign of the condition.

It seems clear that the shameful lack of awareness and understanding about endometriosis are most likely attributable to an enduring taboo around menstruation itself, and the reluctance we can have to talk about it openly. Encouraging women of all ages, backgrounds and ethnicities to talk more openly about our health, our bodies and our experience of menstruation is an important step in empowering them to make informed choices about their healthcare.

Menstruation is a natural, normal bodily function, which is experienced by the vast majority of women of reproductive age, every month of their lives, yet the cult of silence that so often seems to exist around periods means that those who suffer from endometriosis find it difficult to get diagnosed and face a poor public understanding of their condition and how it affects their everyday lives. Brushing off period pain as inconvenient “women’s troubles” makes it all the more difficult for women with endometriosis to get the help that they need to deal with a painful condition that can seriously disrupt their lives.

I was shocked to discover that the condition affects more than 1.5 million women across the United Kingdom. As Alison Harris pointed out, that means that the number of women who are affected is comparable with the number of people who are affected by diabetes—and yet awareness of endometriosis remains woefully poor.

Endometriosis is much more than just having a painful period. It is a serious gynaecological health condition, which can seriously impact a woman’s life. Like Alison Harris, I was struck by the experience of Lyndsey, a co-leader of an Edinburgh-based support group, who has written about her condition. Lyndsey’s story about how her work and relationships have been affected, and the stories of other women like her, underline just how important it is that policy makers and members of this Parliament ensure that we work together to raise awareness about endometriosis, to ensure that women can be diagnosed earlier, and to invest in further research about how to improve treatment for those who are affected.

The debilitating nature of endometriosis and the irregular bleeding that many women who have it experience throughout their lives highlight another point about how we as a society talk about and cater for menstruation and women’s rights to be healthy. In Scotland today, the affordability and accessibility of sanitary products remain a pressing problem for far too many women. That is an issue on which I have been campaigning, and it is something that I have raised with the Government numerous times in this chamber, including during my members’ business debate on sanitary products, in September last year. [Interruption.] Like Stewart Stevenson, I normally like to talk, but my cough means that I am having difficulty doing that.

Women can be unable to access sanitary products for a number of reasons. It might be due to a restriction in or lack of income. It might be due to irregular periods, which catch women unawares. Access can also be a problem for young women, teenagers and girls who are in education and have little or no income of their own. I have been pushing the Government to keep looking at the issue and to consider what can be done in Scotland to alleviate that gendered inequality.

The issue to do with availability and cost of sanitary products is especially acute for the 10 per cent of women of reproductive age who suffer from endometriosis. Perhaps the minister will elaborate on the matter in her closing speech and set out plans on how the Government can alleviate that burden for women who have the condition.

17:23  

I confess that when I signed the motion it was more about acknowledging how endometriosis can affect someone than it was about my possessing any knowledge of the condition. However, as a signatory to the motion I was given the opportunity to speak in the debate and to inform myself about the condition and how it affects women. I thank Kenneth Gibson for bringing a debate on the subject to the Parliament and giving members the opportunity to talk about it.

One of the starkest things that I found was the lack of information out there. In this debate we have heard the national statistics many times, but it is difficult to get information that is local to our constituencies. After contacting Endometriosis UK, we struggled to find data on how many women have been diagnosed with or are being treated for the condition in the north-east. However, I was pleased to find that the first British Society for Gynaecological Endoscopy endometriosis centre in Scotland was set up in Aberdeen.

Such centres are not necessarily the centre of a woman’s experience when she has endometriosis. A woman in the north-east to whom I spoke repeated the problem to do with awareness and expressed her concern about the huge length of time that it takes to be diagnosed. I would like to take a minute to share her story. Her symptoms started when she was 15, but the possibility of her having endometriosis was not even considered until her mid-20s, when she was finally diagnosed. That is where women are facing the biggest problem: not enough people are aware of the condition.

She had to endure constant trips to doctors, multiple tests and reviews of treatments that she had undertaken, and all the time, her symptoms were getting worse. Women suffer from endometriosis for an average of seven and a half years before reaching diagnosis, and we forget the impact that that has on a sufferer’s physical and mental health. Although endometriosis is not life threatening, it is certainly debilitating, with the worst cases causing infertility. Mentally, failure to diagnose can cause depression, anxiety and stress about whether symptoms can be eased. It can also have an impact on women’s social lives, making them shut off from friends and loved ones as they suffer in silence.

A statistic that shocked me is that a staggering 1.5 to 2 million women in the UK are affected—the same as the number of those who are affected by diabetes. Diabetes is a condition that most people on the street could speak about for five minutes without doing any research, but endometriosis? I admit that I had to Google it. Many of us are uncomfortable talking about it, and that may be why I did not even know that endometriosis has touched the life of one of my staff.

Raising awareness is easier said than done but when it comes to our health, it should be a priority. In schools across the country, children are receiving guidance on universities, peer pressure and sex education, yet the second most common gynaecological condition is barely mentioned. We should be pushing for increased awareness. We should be talking about the condition in places that can really make a difference. We should make this a conversation that is no longer uncomfortable. While our scientists and doctors across the country continue to research treatments to help women, we as a society can help, simply through our awareness and understanding.

17:26  

I am grateful to Kenny Gibson for bringing the topic to the chamber for debate, especially—as he outlined at the start—because it has been 16 years since it was last discussed in the chamber. The debate provides a timely opportunity to acknowledge the commitment and dedication of our national health service staff in diagnosing and treating endometriosis. I would also like to acknowledge the efforts of Endometriosis UK in its pursuit of continuing to raise awareness of what can be an extremely debilitating condition. I also welcome Anne Devlin to Parliament and pay tribute to her and her efforts to raise awareness of the condition.

As we have heard this evening, young women in particular need to be encouraged to seek help at an early stage, which can increase their ability to conceive later in life and may mean that they will not experience symptoms that can impact on their quality of life. As Endometriosis UK has pointed out,

“Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and health care costs.”

A wide range of other factors prove costly to the UK, which is certainly something that we need to work on to improve. The Scottish Government has a positive relationship with Endometriosis UK. Its campaign, “It’s OK to talk. Period.” has been running for several years now, and it was actively involved in the chief medical officer for Scotland’s group that looked at improving early diagnosis and treatment.

The Endometriosis UK survey that was published a year ago also helped to establish where people with endometriosis prefer to be treated; the survey found that most want care to be provided by specialist endometriosis centres. Such specialist centres bring together experts in gynaecology, surgery, urology, pain management, and psychology, alongside nursing support. Patients are discussed at multidisciplinary meetings to plan the best treatment. That person-centred approach helps to ensure early accurate diagnosis and better-informed care. Specialist centres can be accredited by the British Society for Gynaecological Endoscopy to ensure consistent delivery of high-quality care—high-quality care that is absolutely necessary and urgent.

Alison Harris and Kenny Gibson articulated the real-life realities for women who live with the condition, which illustrate the need to ensure that the quality of care that they get is as good as it can possibly be. They require no less than specialist support and care.

In 2015, the CMO’s group recommended that NHS Scotland continue to develop accredited specialist centres. I am pleased that there are now two in Scotland, at Aberdeen royal infirmary—the first of its kind in Scotland—and at the Royal infirmary of Edinburgh. The centres provide multidisciplinary, state-of-the-art, high-quality and person centred treatment for management of all grades of endometriosis. They also have an important role in raising awareness. I point members to the Edinburgh centre’s website, which provides patients with detailed information on the members of the specialist team, the condition and its symptoms, what happens at the clinic, and the treatments and surgical options that are available. It also gives information for clinicians and details of how people can access the centre’s services.

The Edinburgh centre has an excellent working relationship with Endometriosis UK. Together, they have signposted links to a wide variety of organisations that offer additional support. We expect all centres to develop that information, which is so important to help women to cope with the condition. I expect centres to work together to ensure that reliable, accessible and relevant information is available. That is part of the approach that is absolutely necessary to ensure that the condition is talked about much more openly and is known about, and that women who face the condition are empowered to deal with it earlier.

Earlier diagnosis is clearly necessary. The heartbreaking testimonies that we have heard illustrate that we need to continue to build on the work that the chief medical officer and the specialist centres have carried out so far. We clearly need to do much more. The CMO’s group concluded that we really need three centres if we are to meet fully the needs of patients across the country. That is why the group recommended that the west of Scotland NHS boards should look to set up a specialist centre in their region. I have had assurances from NHS Greater Glasgow and Clyde, which is leading on the development of a centre, that a business case will be ready for the beginning of April. If the business case is approved, implementation of the west of Scotland centre will follow without further delay. That is work in progress, and I will be happy to update members in due course.

I hope that that reassures Kenny Gibson and his constituents that there is some light at the end of the tunnel, and that his constituents will, I hope in the near future, be able to access the specialist care that is not currently available in the west of Scotland.

The final recommendation from the CMO’s group was that NHS Scotland should consider setting up a national managed clinical network to ensure standardised and co-ordinated care for patients across Scotland. The national specialist services committee, which makes recommendations on commissioning of national networks, recommended that, in the first instance, we should look to establish the third specialist centre in Glasgow. Perhaps members will agree that we should focus on getting that up and running and then consider where other improvements can be made. The committee’s thinking is that the three centres should, by working collaboratively, be able to fulfil the aims of a national network and ensure consistent and co-ordinated care for all endometriosis patients.

I will maintain a keen interest in how the proposal for a specialist centre in the west progresses, and I remain open to revisiting the need for a national network, depending on whether the three centres can work together to deliver those aims. I wish to make it clear that although the proposal for a west of Scotland centre is to be celebrated, while it is being taken forward, women can be referred to the centres in Aberdeen or Edinburgh. If members have any evidence or constituent cases that suggest the contrary, I will be happy to take them on board.

The Scottish Government remains absolutely committed to ensuring that Scotland’s NHS continues to be world class. I very much expect that having three accredited endometriosis centres in Scotland will go some way towards achieving that aim. They will help to raise awareness among the public and, importantly, among healthcare professionals. They will ensure that women living with endometriosis have access to speedy diagnostics and the best treatment that is available. In short, the centres will deliver better care, better outcomes and, ultimately, the better quality of life that we all wish for.

Nevertheless, it is clear that we must continue to ensure that endometriosis is talked about fully in the Parliament, and that we build on the work that has been carried out by the CMO and the specialist centres. We need to ensure that the proposed centre in the west delivers on the aspirations and gives the outcomes that we expect, so that we no longer hear about people feeling that their lives are blighted. We must ensure that people feel supported in managing the condition, that they can talk openly about it, and that it is not another 16 years before we in Parliament raise awareness of the condition, which impacts on the lives of many women in our country.

Meeting closed at 17:34.