Endometriosis Care in Wales

The future is bright; the future is YELLOW! Endometriosis patients finally being made a priority in Wales and not before time, thank you NHS Wales!

Friday, 10th of March 2017 was a highly significant day for endometriosis patients in Wales. On the back of FTWW’s report, ‘Making the Case for Better Endometriosis Treatment in Wales’, Welsh Government and NHS Wales decided that a task and finish group was needed to completely redesign strategy for patients here.

The task and finish group comprises patient representatives, the Cardiff specialist endo team; the gynae clinical leads from all the Welsh health boards; a director of nursing; a pelvic physio; a pelvic pain specialist, and a health psychologist. Since the group was established, representation from Primary Care / General Practice, Public Health Wales, and the Welsh Informatics Service have been recruited.

We are pleased to announce that, in short, everything for which FTWW has been calling:

  • GP training to reduce the diagnostic delay;
  • gynaecologists trained in excision instead of ablation;
  • clear, consistent referral pathways;
  • potentially more endo centres;
  • a holistic package of care for patients, to include pain-management and other additional therapies for maintenance and follow-up;
  • proper integration of the 3rd sector, ie FTWW;
  • resources for local education authorities and school nurses to ensure endo is part of the PSHE curriculum,

has been agreed as essential for a forward-looking, ambitious endometriosis service in Wales.

The larger group has been broken-down into four working groups, focused on specific areas of the envisaged service, who continue to report back at our regular whole-team meetings at the Welsh Government offices in Cathays Park, Cardiff.

Since our first gathering, the NICE guidelines for Diagnosis and Mangement of endometriosis have been published, in which FTWW was a contributing stakeholder*. Whilst the Task & Finish Group is using these as a baseline resource, we hope that our own recommendations to Welsh Government will go further in improving the diagnosis and management of patients here. We continue to gather the necessary data and work with the relevant people to make this happen, and a report to Welsh Government is planned for January 2018.

Watch this space!

*For stakeholders’ comments on the guideline (including FTWW’s), and responses received by NICE, follow this link.

Update October 2018: We’re thrilled to announce that Welsh Government has released its statements on endometriosis, and the Task and Finish Group’s report, and recommendations. You can read about it here!