'Clear as mud' application process for endometriosis treatment putting women off, advocates say

Endometriosis is estimated to affect as many as one in seven girls and women in Ireland and around the world. File photo

Fewer than 10 women completed applications for endometriosis treatment abroad under a scheme launched in October while only around 50 have made enquiries, new HSE data shows.

Advocates have called for more transparency, saying some criteria are “clear as mud” which is putting women off. The debilitating condition is estimated to affect as many as one in seven girls and women in Ireland and around the world.

Concern about gaps in Irish services has led to a focus on expanding services especially in Cork and Tallaght hospitals as well as opening an endometriosis surgery abroad interim scheme (ESAIS).

The HSE said “more than 50 women” have now contacted the scheme about care abroad and in Ireland. “To date, we have received fewer than 10 completed ESAIS applications,” a spokeswoman said.

The data, valid up to January 12, showed no applications denied. Most travelled to UK centres, she added. The type of procedures funded is not available for confidentiality reasons.

Scheme staff also link in with the Cross Border Directive office. This is open to patients with any condition. They have now seen 12 applications for endometriosis care completed.

My Voice Project

Lisa Walsh, co-founder of support group My Voice Project, is separately in an endometriosis advisory group set up by health minister Jennifer Carroll MacNeill. She described the surgery abroad scheme as “a grey area” so far.

“I am hearing a lot from women that consultants here in Ireland are refusing to sign the paperwork or referrals to access the appropriate care abroad which is a huge roadblock for women,” she said.

“I would call on the minister and the department to put some process in place so that women can access care without these barriers.” 

GPs should be able to make referrals also, she argued. She called for more clarity on eligibility criteria and the approved clinics list.

“It is known now in the community that people are being approved for clinics not on the list and without a surgery date in Ireland,” she said.

The Limerick woman is also aware of confusion about payments. She is hopeful the advisory board will meet more often, saying: “I feel endometriosis is a crisis. We can’t afford to lose any time.

“It felt like an update meeting from the HSE. We are invited to give feedback but as it stands I feel there should be more input from us patients on the board.” The group plans a protest on January 21 at the Dáil.

Endometriosis Association of Ireland

The Endometriosis Association of Ireland would also like changes to the scheme.

“That interim scheme didn’t land well,” chairman Damien Donoghue said. He added: “The uptake has been poor, because it (the way it works) is clear as mud.” 

A key concern is the many public NHS centres on the list. “How do you bypass local waiting lists for public hospitals? You don’t,” he said.

Next month the association launches an awareness campaign though GP practices. Information will be shared on digital screens often available in waiting rooms. Women can click on a QR code for more supports.

It will run for three months to start with, and he advised: “People can look out for it, it’s a resource they can use.”