Senedd: Alyn and Deeside MS calls for specialised Endometriosis nurses in Wales

Jack Sargeant MS has asked the Welsh Government for Senedd time to discuss the need for nurses that specialise in Endometriosis.

The call comes on the back of a meeting with Georgia Jefferies, a dedicated campaigner from Alyn and Deeside, who has been at the forefront of advocating for enhanced services for women suffering from endometriosis in Wales.

Endometriosis, a condition characterised by tissue similar to the womb lining growing outside the uterus, causing severe pain and a host of other symptoms, affects women of all ages, including teenagers.

Despite its widespread impact, the path to diagnosis is fraught with hurdles, significantly affecting sufferers’ quality of life.

Highlighting the dire situation, a report by Endometriosis UK has shed light on the distressing delays in diagnosis across the UK, with the average waiting time now standing at eight years and ten months.

Specifically, in Wales, the wait has alarmingly increased to nine years and eleven months.

These delays are not just numbers; they represent years of pain, misunderstanding, and missed opportunities for treatment for countless women.

Endometriosis UK also calls for comprehensive education and training on menstrual health and endometriosis for all healthcare professionals, particularly emphasising the role of nurses, A&E practitioners, community pharmacists, gynaecologists, and GPs.

Liz Bruen, a specialist endometriosis nurse, echoes the report’s sentiment, advocating for the integration of endometriosis and menstrual health into both initial training and continued professional development for healthcare professionals.

Speaking to the Nursing Times, Ms Bruen’s insights reveal a healthcare system in need of a paradigm shift, where endometriosis is recognised and responded to with the urgency and specificity it demands.

She said: “There needs to be an awareness raised, even long after you finish your training, be you a nurse, psychologist, GP, etc.,” she told Nursing Times.

“This needs to happen so when a patient comes in, there are triggers which makes you think – this is endometriosis.

“The issue is that people confuse it with other things.”

Ms Bruen agreed that gynaecology and menstrual health had historically always been the worst hit when resources were cut or redeployed.

Ms Bruen said her own experience in practice mirrored the findings of the report, and in particular the issues raised by people with endometriosis feeling ignored.

“It’s the trigger words, somehow we need to incorporate a subconscious response that when someone turns up and is on their period in horrific pain, particularly if not the first time, there is something going on,” she continued.

“It’s not because they are seeking attention or just not coping.

“People don’t turn up to casualty willy-nilly, or take painkillers unless they’re in pain the majority of the time.”

Ms Bruen said investing in endometriosis training, and more menstrual and gynaecology healthcare staff such as specialist nurses like her, would benefit the entire healthcare system.

She pointed to the reduction in A&E admissions seen when asthma nurses were in place, and said that more endometriosis specialist nurses could help in a similar fashion.

Currently, there are only a very limited number of these nurses in the UK.

The Welsh Government, since 2021, has funded one per health board in the country.

Ms Bruen said that while this was a positive change in Wales, it should only be the beginning of improving care for people with the disease and that the whole healthcare community must become more educated on endometriosis.

“It’s a chronic condition and [patients] need to be managed in primary care as well as secondary care,” she added.

“[Specialist nurses] are a first step, but we need to facilitate their development.

“I still passionately believe the basic skills of nursing will help you identify someone who really needs our help and it’s a matter of empowering those skills and allowing people time to be able to do that.”

She said women “deserve a quality of life, they deserve a sex life”, adding: “They deserve to be able to go to the toilet without having to scream or vomit because it feels like they’re peeing glass.”

Speaking in the Senedd, Jack Sargeant said: “I had the pleasure of meeting campaigner Georgia Jefferies, who lives on Deeside, and campaigns for better services for women with endometriosis.”

“Georgia rightly identified the need for specialist-trained endometriosis nurses across Wales, and for all services to be readily available for those patients.”

“I’m obviously keen for those improvements to be made, as I’m sure my colleagues on the Petitions Committee are, after the work we’ve done on this. ”

“Please can I ask for a statement from the Welsh Government, updating Members on endometriosis services during the awareness month.”