P-06-1242 Improve Endometriosis Healthcare in Wales - Correspondence from the Petitioner to the Committee, 22 April 2025

Thank you for your e-mail and the letter from the Minster for Mental Health and Wellbeing.

Please could the following extract from the Minister’s letter be highlighted with the Petitions Committee during the meeting:

“With regards to your specific query relating to tertiary endometriosis care, where more complex endometriosis treatment is required, referrals are made from health boards to an accredited endometriosis centre. There are currently two in South Wales – in Cardiff and Vale University Health Board and Swansea Bay University Health Board. Although these are accredited centres, they are not commissioned as a specialist service. We recognise the difficulties women face in accessing specialist services for women’s health conditions, particularly tertiary care for endometriosis. Welsh Government officials will be working with the Women’s Health Network and the Joint Commissioning Committee to explore establishing commissioned specialist services in this area.”

I’m really pleased to hear that the Welsh Government will now be starting to explore establishing commissioned specialist services for endometriosis, however I wanted to note what this will continue to mean for endometriosis patients whilst we await progress in this area.

As endometriosis tertiary care is currently not commissioned as a specialist service, for a patient who lives (for example) in the Hywel Dda University Health Board area, they’ll be unable to access treatment for endometriosis due to the funding not following the patient to Cardiff and Vale University Health Board or Swansea Bay University Health Board (the two accredited endometriosis centres). Therefore, until this changes, women will be left living in pain or having to pay for treatment privately.

It’s also worth noting that tertiary care is not just required for a small percentage of complex cases, it is vital for the majority of us, as laparoscopic surgery is the only way to diagnose and treat endometriosis. I’ve had three operations (so far) to diagnose and treat my endometriosis, and I had to access this tertiary care treatment privately for two of the operations due to the length of time I would’ve had to wait for treatment on the NHS (and I live in the Cardiff and Vale University Health Board area).

The lack of tertiary care is why girls are missing out on education whilst they await diagnosis; it’s why women are unable to progress their careers whilst they await treatment; and the financial implications are vast with the NHS Confederation women’s health economics report estimating the economic cost of absenteeism due to conditions like endometriosis, to be nearly £11 billion per annum.

As I’ve previously mentioned, the lack of tertiary care is one of the main points I’ve been trying to raise via my petition, and we’re now hoping to see the start of change with this issue. I therefore again hope that my petition can be kept open until tangible progress is made with tertiary care for endometriosis patients, but if not, I ask that the Committee will agree for a future petition on endometriosis to be accepted and re-considered if no progress has been made within the next year.

Finally, I would also like to add my thanks to the Senedd for recently signing up to the Endometriosis Friendly Employer Scheme which is run by the charity Endometriosis UK. Through the scheme, Endometriosis UK provides guidance for employers on how to support employees with endometriosis, and work towards improving the work environment.

Diolch,

Beth