Endometriosis advocacy group not consulted on new treatment framework
'because Td: Many Shortall Real Other Misdiagnosed ' Overlap Danger Is Symptoms Being A Of Of Conditions, The Endo Roisin With So There
The only advocacy group for endometriosis, a disease that affects up to 250,000 Irish women, was not consulted in setting up a new Government framework for the treatment, the Oireachtas Health Committee has heard.
Women can wait years for diagnosis despite crippling symptoms. That can lead to people fearing unemployment or being told they have irritable bowel syndrome and depression, the Endometriosis Association of Ireland (EAI) said.
They are “in the dark” about how the framework will work and what data was used to calculate the number of specialist centres required.
Vice-chairwoman Ilana Darcy said despite plans for clinics, including at Cork University Maternity Hospital, there is a long way to go.
“We welcome the positive steps taken here and also with the development of the National Endometriosis Framework. However, we have concerns over how well-understood endometriosis is and whether the needs of the patients have been fully considered,” she said.
She said long wait times for diagnosis and treatment persist and women are still travelling abroad for treatment.
Ms Darcy was only diagnosed with endometriosis at 36 despite having been told at 16 she had PCOS (polycystic ovary syndrome).
Social Democrats TD Rosin Shortall found it “incredible” the EAI was not consulted.
EAI secretary Beibhinn Nic Liam told her: “We would like to be involved because I think it is important that the patient view is carried through to make an effective framework.”
She said a press release by the Department of Health indicates doctors will work on the basis of a “presumed diagnosis".
She added: “Because the symptoms of Endo overlap with so many other conditions, there is a real danger of being misdiagnosed and I think it is important that we continue to have a proper diagnosis and not just a presumed diagnosis.”
Ms Shortall said: “I can’t help thinking if it was one in ten men (affected) it would be a different story altogether.”
EAI members agreed some women had relief from surgery abroad.
“While the cross border directive was put in place to help facilitate this, not everyone is eligible, there are up-front costs which leave it out of reach for many and those who do travel are faced with the distress, loneliness and complications associated with travelling abroad for medical treatment,” Ms Darcy said.
She said advocates including Aimee Brown, who lives in Tipperary, have travelled and, also in her case, rely on medical cannabis as mainstream treatment is not available.
EAI chairman Damien Donoghue said his partner travelled to England for endometriosis treatment, but added he is a nurse and has clinical concerns around the added stresses this can cause.
He also called for greater patient involvement in the framework to help address this, telling committee chair Sean Crowe they do not have enough information about what regional treatment will be available.
“We don’t have enough information in regards to what that is going to look like,” he said. “As one of the main (Sláintecare) principles the patient is paramount; we are that advocacy voice and we should be discussing what those next steps are. We’d welcome that. We are left in the dark a little bit in saying these are positive steps but what are the next steps?”