Kilkenny senator calls for healthcare change as patients ‘frustrated’ by care options

A Kilkenny senator has called for compulsory training in obstetrics and gynaecology for all GPs to reduce treatment waiting times for women suffering from “debilitating pain.”

Senator Patricia Stephenson said she was “deeply disheartened” to learn such training was optional “despite the fact that women make up 50% of the population.”

The local senator was speaking in the Seanad where she called on Minister for Health, Jennifer Carroll MacNeill, to address the challenges experienced by women who suffer from endometriosis.

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Acknowledging the endometriosis framework and the endometriosis surgery abroad interim scheme, Senator Stephenson however said that patient advocates have raised concerns about the operation of the scheme.

Barriers
Not only are there barriers to the scheme, including women who report being scared to go abroad and cannot afford the upfront payments, the administrative burden of filling out the forms is a barrier for many women.

“Referral for treatment abroad remains a serious concern. Under the scheme, only consultants can refer but, as the Minister is well aware, gynaecologists have huge waiting lists,” Senator Stephenson said.

Highlighting the gap in training of GPs in this area, Senator Stephenson called for the introduction of upskilling for GPs.
“This would greatly reduce waiting times for women suffering from debilitating pain who must often wait years to see consultants,” she said.

“It can take many months to get a scan while they are living with unbearable pain. That is after years of waiting to see a consultant in the first place.”

Sharing the concerns and experiences of patient advocates, Senator Stephenson told the minister: “Patients are frustrated by the lack of understanding around endometriosis. It is still being treated like a gynaecological issue when we know it is a whole-body disease affecting the bladder, bowel and pelvis.”

Concerns
Senator Stephenson said she also had “concerns about fertility options for endometriosis patients.

“Under HSE guidelines, only cancer patients qualify for egg freezing. While endometriosis patients can get IVF, they have to immediately get pregnant, and this is despite the fact that endometriosis is the most common reason for infertility. I have met patients as young as 15 who are being recommended chemical menopause and women in their late teens and early 20s who have had hysterectomies.

“Unless they are ready to have a baby immediately, they cannot have their eggs frozen. This is devastating for them. They have to choose between living with excruciating pain and being a mother.”

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Medication costs are another area of concern.
“For the women who get surgery abroad and finally get some relief from the agony, there is the impossible cost of medicine to keep them pain free. Ryeqo is prescribed to women who have had endometriosis treatment to reduce the growth of internal lesions. It is expensive. It costs about €140 per month and is not available on the drugs repayment scheme. There is a similar drug that is used in the treatment of prostate cancer; it is available.

“It is really hard for women to trust the system when similar drugs for a particular condition are refundable but those relating to endometriosis involve a significant cost.

‘Jarring’
“The optics of the disparity in this regard are incredibly jarring.”
Minister Carroll MacNeill said she had spoken to many women on the matter and “we are very much trying to move the dial in terms of how it is understood and described.”

The national framework for the management of endometriosis was launched last October and “gives a presumptive diagnosis basis, which is an enormous step forward for people on a pathway to get proper specialist care in the regional centres.
“We are trying to pull every lever we can to deliver a much better service for endometriosis patents,” the minister said.