Endo the Battle: Health Minister highlights work on endometriosis care - but patients say it 'misses the mark'

The Health Minister has highlighted proposed reform to gynaecology services in Northern Ireland, as work continues to cut “unacceptably high” waiting times for appointments and surgery.

Mike Nesbitt, MLA, said women’s health, including services for those suffering from endometriosis, were “important to me and my department” as he responded to the experiences of dozens of endometriosis patients across Northern Ireland.

We have been amplifying the voices of those living with the debilitating, yet common, condition in our Endo the Battle campaign. It takes on average nine years and five months for a diagnosis in Northern Ireland - higher than the eight year and 10 month average in England.

We published an open letter to health ministers across the UK highlighting our findings and calling for an end to the “cycle of suffering” for endometriosis patients.

More than 400 of you shared your experience with endometriosis with us via our anonymous survey, with key issues identified including delays in getting a diagnosis, lengthy waiting lists, knowledge gaps within the healthcare sector and the crippling costs of seeking private care.

We called for urgent action to improve healthcare and the financial cost of living with the condition, including upskilling frontline medical professionals, committing to care for extra pelvic endometriosis and providing endometriosis education in schools.

In a response to our open letter, Mr Nesbitt highlighted his department’s Getting It Right First Time (GIRFT) team, which was commissioned in 2023 to undertake an independent, external rapid review of gynaecology services in Northern Ireland.

“This was a recognition of the unacceptably high waiting times for both gynaecology outpatient appointments and surgery,” Mr Nesbitt said.

“The aim of the GIRFT review was to identify areas where improvements could be made in the extensive waiting lists for gynaecology services, including for those with endometriosis, and to ensure that patients are treated as quickly as possible to ensure best possible outcomes.”

In the statement, Mr Nesbitt said: “The GIRFT report, Gynaecology across Northern Ireland, was published on 31 January 2024. It identifies 20 regional recommendations, designed to improve patient care and tackle waiting times.

“In addition, there are bespoke recommendations for each of the HSC Trusts. It is recognised that some of the recommendations will require additional investment, and this will impact delivery.”

Mr Nesbitt also highlighted the temporary working groups set up as part of the Regional HSC Gynaecology Services Forum, which includes a group specifically focusing on endometriosis.

He added: “This group will look at developing regional pathways from presentation at GP services into secondary and tertiary care. The pathways will consider at what stages a woman can be managed in general practice with clear guidelines for management and skills transference, when required, and an enhanced triage process on referral ensuring that women receive the required assessment at each stage of their journey.

“Referral into inpatient and day case care will be standardised and equitable for all patients regardless of where they live.”

The response comes after dozens of women shared their experiences of living with endometriosis in Northern Ireland, with some travelling miles for treatment and facing a huge financial burden due to the condition.

Laura Moore, who has spoken out about her experiences after travelling to London for endometriosis surgery, told us she was pleased the issue was “on the department’s radar”.

“But can't help but feel the response is missing the mark,” the 34-year-old added.

“It feels like endometriosis is being lumped together with general gynaecology and women's health, when it needs to be looked at individually. A lot of the response talks about gynaecology in general and waiting lists rather than endometriosis itself.”

Laurene Agnew also spoke to us as part of the Endo the Battle campaign, after recently travelling to Romania for surgery. She also expressed concern that endometriosis was being framed “purely through the lens of reproductive and gynaecological care” by the Department of Health.

The 35-year-old said: “There are patients like myself, and undoubtedly many more, who no longer have reproductive organs.

“Endometriosis is not solely a gynaecological issue; it is a full-body disease that demands a multi-disciplinary medical response. The ministers' continued categorisation of it under ‘women’s health’ via gynaecology alone is reductive, outdated, and completely misses the point.

“I shared my story in the hope of real engagement, real progress, and recognition that what women in Northern Ireland have faced; delayed diagnoses, lack of access to specialised care, and in many cases, abhorrent medical treatment, is not acceptable.

“We deserve better. We deserve to be met with urgency, respect, and action.”

The Endo the Battle campaign is being spearheaded by health writer Sarah McCann - read her endometriosis story.

If you have been affected by the content of this open letter or suspect you may have endometriosis you can find out more at the Menstrual Health Project.