Meeting of the Parliament 28 February 2017
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.]