By Andy Jones
THIS is the final column for now in a series giving a voice to those living with endometriosis.
As the situation is still unfolding, it is perhaps germane to begin with a summary of my Teams meeting with Health Minister Tom Binet. This was my take, then, on the meeting.
Without hesitation, he agreed to discuss this issue. He came across as knowledgeable in relation to endometriosis and was extremely concerned about the impact on sufferers in Jersey. He was open and honest about his ambitions for bringing our health service back from the brink and his methodology for doing so. Deputy Binet sees this reform of the service as the way to end the problems we are having with the late diagnosis and unsuccessful treatment of endometriosis.
Given there is no timetable for the revamp of the health service, it is arguable that this really kicks proper care for endometriosis sufferers into the long grass. Deputy Binet vehemently disagreed with my analysis; he sees the announcement of the creation of a specialist endometriosis clinic as an immediate step and a positive move. He does not see it as jam tomorrow but part of a longer health service reform process. Yet there was no extra funding or timetable for a functioning clinic.
I suggested that sufferers would benefit from a “quick win” now; if nothing else, this would show commitment and good faith. I postulated that supporting Deputy Carina Alves’s proposal to mandate a rolling sick certificate allowing three days off per month when required due to their illness might be such a move. Deputy Binet committed to speaking with Deputy Alves about this.
Moving on from the meeting, Deputy Binet’s big vision is arguably laudable but one-dimensional; it is vital to carry the electorate, Assembly and stakeholders with you to the promised land, giving detailed progress reports and regular, obvious positive results. This is lacking.
I alluded earlier to recent developments, and this is where things start to get politically rather messy and difficult.
Neither Deputy Binet nor Deputy Howell, the Assistant Minister with political responsibility for women’s health, had given any indication of a date for the opening of the proposed endometriosis clinic, either in or outside of the Assembly, and we were informed that there was no additional specific funding for the clinic.
Yet in the last week or so, it appears that due to a decision made by Deputy Howell and, by implication, Deputy Tom Binet, the Endometriosis Clinic is now able to take immediate appointments. I have asked Deputy Howell if we could have a Teams meeting on the same basis as Deputy Binet’s, but to date I have not had a response. This new position is a total volte-face on their previous approach and pronouncements, and the cat is now out of the bag.
As a direct result, we have endometriosis sufferers voicing distress, disquiet and confusion over exactly what the Department of Health is doing. The department appears to be reactive, not proactive, with decisions made on the hoof depending on what has just occurred. This is more a headlong retreat from the previous position than a strategic withdrawal, so it is anyone’s guess where the Health Ministry goes from here.
Why the new approach?
Was it always the intention to pull this rabbit out of the hat at a strategic moment of best advantage to Deputy Tom Binet?
Who else in the Council of Ministers knew that the clinic was in fact functional?
If other ministers did know, why the complicity?
Why, given the very obvious suffering and agony being suffered by women, would any empathetic, responsible government hold back on a vital resource?
Did Health and Social Services ministers know at the time of the last Assembly session that the endometriosis clinic was able to function and take appointments?
Or giving them the benefit of the doubt, was it ready and no one had told them, or had they just forgotten?
Importantly, where are the terms of reference for the functioning of the clinic, a business plan and something telling us how they will define success?
This has serious implications for trust and accountability in the Health and Social Services Minister specifically and the council in general.
Was the Women’s Health Strategy shelved in order to reduce oversight and accountability?
Arguably endometriosis sufferers are not better off; if anything, they are worse off, with the risk of dashed expectations and no end in sight.
The Assembly must insist on a dedicated Health Minister and a woman’s health strategy. This is vital.
I have repeated the following passage, as it epitomises succinctly everything I have been hearing and reading. These sufferers are women who struggle daily to deal with endometriosis and in some cases are close to giving up or have already done so.
Endometriosis prevents normal close intimate relationships from developing or destroys those already in existence. Sexual intercourse/penetration can be impossible due to the pain; women are frequently in so much pain for extended periods or permanently, often due to inadequate treatment and medication, that some partners cannot cope, with women left alone to face these traumas.
“You asked about endometriosis.
“I have had it for nearly 40 years and feel as if I have been written off, left to wait for menopause, in severe pain which limits my life in so many ways. It has spread so much that it’s on my lungs and liver and causes bleeding so bad that I collapsed in the street from anaemia, which affected my retinas, and I couldn’t see for two weeks. I cough up blood. At the Hospital, I’m stuck in a loop. Follow-up appointments and scans get cancelled and never rearranged, and it’s a different gynaecologist almost every time I see one. They don’t know my history and suggest treatments which didn’t work previously or had terrible side effects.”
Women deserve so much more from our Council of Ministers; shame on them.
Response from Deputy Andy Howell, Assistant Minister for Health and
Social Services
I WOULD like to thank Andy Jones for continuing to give voice to women living with endometriosis. I fully recognise the distress this condition causes and the urgent need for better care.
I hope to reassure Islanders that the government is taking meaningful steps to address gaps in women’s health and care services. Improvements to support women suffering from endometriosis was identified as a priority, and the recently opened Endometriosis Clinic, led by Professor Enda McVeigh, is now accepting appointments. This clinic is the result of sustained work to reconfigure existing resources into a dedicated, multidisciplinary service and has enabled us to streamline care already being delivered, ensuring women no longer face fragmented and delayed treatment without a need for extra funding. I have been in contact with Mr Jones directly about the clinic and remain willing to meet him should he wish.
Endometriosis is complex and often coexists with other conditions. Normalising chronic pelvic pain has silenced too many for too long. That is why we are committed to early diagnosis, empathetic care and listening to patients – always.
As Assistant Minister for Health and Social Services with responsibility for women’s health, I lead the Women’s Health Political Advisory Group, which brings together eight elected members to review and drive key actions. While a dedicated Women’s Health Strategy was not adopted by the previous Health Minister due to funding constraints, our co-ordinated work continues. Examples include: the new Endometriosis Clinic; the ongoing refurbishment and plans to reopen of Rayner Ward to improve gynaecological care and provide a dedicated ward for women; permanent access to free period products; an emphasis on maternity and bereavement care in a revamped Maternity Unit with a breast feeding champion and mental-health support; a new breast screening unit at Enid Quénault, and a shift to opt-out breast and cervical screening and increased IVF funding. We are combating loneliness through schemes such as Connect Me and raising the profile of health conditions specifically relating to women, including the menopause, so that they are no longer taboo subjects and women and girls get the support that they deserve.
I am passionate about doing all I can to make improvements to women’s health while I have responsibility in this area. There is always more to do, but we are listening. We don’t want anyone to suffer in silence.
We have an action plan for women’s health and we are delivering for women and girls in the Island.
