Meeting of the Parliament 28 February 2017
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.