Hansard

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—