Derry & Strabane unanimously demands better for those living with endometriosis

A motion to this effect was tabled by People Before Profit Councillor Shaun Harkin at the recent Full Council meeting, and received the unanimous backing of elected representatives on Derry City & Strabane District Council.

Another element to the motion will see the Council also write to Education Minister Paul Givan asking for clarity on his Department’s strategy to educate all students, including boys, about menstrual health issues.

Last month the ‘Journal’ published interviews with local women who spoke of the horrific impact the condition was having on their lives as they appealed for political support to help them secure adequate healthcare provision and spread awareness.

Colr. Harkin’s motion called for the Council to recognise the Endometriosis Support Group (ESG), based in Derry Well Woman Centre, for the “outreach, educational and support work that they are doing with people who are suffering from this disease”.

The motion also urged the Council to note that “it is estimated one in seven people assigned female at birth around the world suffer from endometriosis, a disease which is as prevalent as asthma and diabetes in our local council area, and yet, they have access to only one clinic a month based in Altnagelvin Hospital and can wait up to ten years for a diagnosis and a further 3+ years for essential surgery.”

The Council has also pledged, as called for in the motion. to give its full support to these campaigns and to work with ESG to develop a plan of action for this March’s ‘Endometriosis Awareness Month’.

Speaking to his motion, Colr Harkin said: “Endometriosis is a condition that impacts somewhere in the region of close to 200 million women and girls across the world. It is described as a chronic disease associated with severe, life impacting pain during periods, sexual intercourse, bowel movements, urination, bowel movements, chronic pelvic pain, abdominal bloating, nausea and fatigue and sometimes depression, anxiety and infertility.

“When I met with the support group they expressed a lot of frustration at the lack of availability of healthcare facilities for them, and a lack of expertise as well in the health department and a lack of education about the issue, and I do believe there is a lot of confusion, even some denial, about the issue; about the condition that women and girls have to contend with.

"They said to me if this was a condition impacting men there would be huge investment, and research papers, in hospitals to solve this problem and there really isn’t that level of support. They are basically campaigning for more resources in the health service to be dedicated to this, for women who have this condition to be taken serious, for proper treatments to be made available, and for education in our schools, including for boys for girls and women’s menstrual cycles so people can learn how bodies work, how to treat it.

"This is about having a health service that is actually set up and designed to address women’s health problems. There is some availability in the Western Trust but they feel strongly that it should and must go a lot further and that is why there is a request with the Health Minister to provide clarity on how better provisions can be made available for endometriosis treatment in the Western Trust and to the Education Department as well on the issue of education."

Colr. Harkin commended the work the group does to help so many women and girls with the condition.

Mayor Lilian Seenoi-Barr said she was very impressed and thankful that Colr. Harkin had brought this motion and spoken so eloquently about these issues.

SDLP Councillor Martin Reilly said his party fully agreed with Colr Harkin in recognising the work of the support group and Derry Well Women.

"This is a condition that affects so many people in our Council area but the resources and effort put into dealing with it by the Department of Health doesn’t match those figures.”

Colr. Reilly said it was important, as well as holding the department to account, that the Council also does what it can to help raise awareness given “the fact that this is causing serious problems for women and girls.”

He also spoke of how his party colleague, Foyle SDLP MLA Sinéad McLaughlin has previously raised the lack of investment in the Assembly and spoken of her own experience.

DUP Alderman Julie Middleton said: “On behalf of the DUP we support all women in our district, country and further afield struggling with endometriosis or undiagnosed endometriosis.

"On behalf of those of us females who have endometriosis, those who are waiting on diagnosis, and those we know who have symptoms, we acknowledge the difficulties and painful and often mentally draining symptoms endometriosis can bring to your daily life.”

Alderman Middleton said her party was supportive of the projects run by Derry Well Women and acknowledged that "we must tackle waiting lists”.

While broadly supportive of the motion and not seeking an amendment, Ald. Middleton said she would like to put on record that she felt the reference in the motion to “‘assigned female at birth’ in relation to a medical condition that can only be experienced by a woman is offensive”.

"Endometriosis,” Ald. Middleton said, “among many other symptoms, can cause infertility and an estimated 20% increase in a miscarriage. Between the birth of my son and my daughter I lost ten times. No man will ever know the physical pain, the feeling of the life draining from my body or the mental distress I went through during those years. As a female I feel such wording completely demoralises the infertility journey that I and so many other women with endometriosis and other fertility issues face.”

Colr. Harkin responded that this was the wording which the support group supplied as they wanted to be inclusive of those suffering from the condition who did not identify as female.

UUP Alderman Janice Montgomery said knowing people with the condition she knew how challenging it was for those who suffer from it and expressed gratitude to the Derry Well Women for the work they do.

"Far too many women from across the city and beyond have been waiting for far too long for appointments and I am happy to support the motion,” Ald. Montgomery said.

Sinn Féin Councillor Caroline Devine congratulated the work of the support group, and proposed an amendment to include that the Council also call on the Health Minister to prioritise the progression of a Women Health’s Strategy “that supports women through every stage of their lives with a particular focus on education, awareness raising, early diagnosis and timely treatment.”

Colr. Devine said: “Awareness and support are really important to ensure women don’t feel isolated and that they are on their own when struggling with this condition.

"It’s important from a medical perspective that assessment and early diagnosis, effective treatment and ongoing management of the condition is vital to ensure women are not suffering unnecessarily and also to reduce the risk of future complications that can come along with endometriosis.

"It seems absolutely incredulous,” she added, “that anyone should have to wait nearly 10 years to get a diagnosis for such a debilitating condition, and that in fact those waiting times are going up.

"Despite the prevalence of the condition and the health consequences it remains under-funded in terms of research and clinical services.

"We need more research to better understand the condition, its causes, and then, ultimately, to help develop effective treatments.”

While welcoming the publication of Getting It Right First Time, and the ongoing review into gynaecological services in the north, Colr. Devine said better specialised clinics and inpatient surgical provision was needed in the west for women with endometriosis and those with other gynaecological conditions.

SDLP Councillor Catherine McDaid said this was an important and serious matter that was “not often talked about by women or men”.

"For anyone who doesn’t know what it is, it is the lining of your womb forming on other parts of your body. I was speaking to a woman recently who had endometriosis in her lungs, so she was having the lining of her womb or similar tissue forming on her lungs and the impact that was having on her, and it was impossible to diagnose. It was taking 10 plus years and she was diagnosed with everything else but that.

"So it is really important to highlight it and spread information about it. We need more awareness among men, women, doctors. You can go to a GP and be told you have painful periods, that’s normal, take a paracetamol and lie down for an hour butthat’s not what this is. It’s really extreme, really debilitating and really limits your ability to act in a functional way.”

UUP Alderman Darren Guy also thanked Colr. Harkin for bringing the motion. “Waiting times for gynaecological outpatients appointments and surgery remains unacceptable," he said, adding: "When the Health Minister last May pleaded with the Executive Ministers to allocate £2.5m specifically to allow him to have seen and treated the 4,000 women who had been waiting the longest regrettably the bid wasn’t accepted and not a single additional penny was allocated.”

Ald. Guy said that while this was extremely disappointing, he was glad to see some things were not happening towards reforms to services.

Colr., Harkin’s motion with the slight amendment was backed unanimously by the Council.

An endometriosis awareness event will be held at Ulster University Magee campus on Monday, March 3 at 7pm and there will also be an event at Stormont on March 18, with all political parties invited to attend and engage.