The Brainstorm Long Read: communication and miscommunication play a huge role in the fraught relationship between women, their health and the healthcare system 

Women's health has been making headlines in Ireland regularly over a number of years, not least because many have felt dismissed or not listened to. There’s plenty to excavate in the fraught relationship between Irish women, their health and those in charge of it. Just think of such historical controversies as Thalidomide, symphysiotomies, the mother and baby homes and the Magdalene laundries. More recently, there was the death of Savita Halappanavar in 2012 and the CervicalCheck scandal in 2018, which was brought to light by Vicky Phelan’s "extraordinary determination not to be silenced."

One example of a women's health issue which highlights how crucial medical communication can be, is Endometriosis, a condition where tissue, similar to the tissue that normally grows inside the uterus, grows outside of it. The incurable disease has a diverse set of symptoms and causes scarring as well as severe chronic pain from inflammation and can lead to problems with fertility. One in 10 women in Ireland (an estimated 155,000 people) suffer from it, but it continues to be poorly understood. Despite being one of the most commonly seen gynaecological diseases, a complex interplay of factors all lead to an average diagnostic delay of nine years in Ireland.

From RTÉ One News, documents reveal Irish government decided not to warn public over Thalidomide

"I still have young women who are going in, armed with our leaflets and saying 'I think I might have this condition, can you refer me?’ and they're nearly more likely to be referred to mental health services than they are to a gynaecologist." says Kathleen King, chair of the Endometriosis Association of Ireland. "That assumption is still there, that women are catastrophising, over-dramatising their pain, looking to get out of situations like school or college or work."

Sometimes girls or young women might be put on the pill or pain-related medication and that might work for a short time, but it pushes back diagnosis even further, King says. Many struggle with shame and embarrassment around the disease. Some aren’t diagnosed until they’re trying to get pregnant and research shows that up to 50% of women with infertility have endometriosis. However, it is estimated that over 70% of women with endometriosis will still be able to conceive.

From RTÉ One Nine News, Vicky Phelan tells PAC she does not want to die in vain

Women report not being believed and having to see multiple doctors before finally being diagnosed, King explains. A lack of medical awareness, inadequate diagnostic methods and ineffective surgeries in some cases all ultimately have a profound impact on the health and quality of life for women. There is a misconception that it only affects people in their "reproductive years" but Endometriosis is something you are born with and it "doesn’t just disappear at menopause," she says.

"When you’re a teenager, you don’t necessarily realise that that level of pain is abnormal. Even if you do, you approach your GP and your GP is going to say ‘look, you’re too young to have Endometriosis, it’s not that or it couldn’t be that’ and we’re still seeing women being dismissed." 

Historically, women have been excluded or underrepresented in research and clinical trials, sometimes with dangerous outcomes. Studies have shown that women are more likely to be misdiagnosed after a heart attack and less likely to receive the right treatment because of it. A US study found that women are more likely to survive a heart attack if their doctor is female and so, in fact, are men. Studies have also shown that women are less likely to be treated for their pain. Women - and men - also experience weight bias in healthcare.

At no point did it feel like a conversation between equals

A Europe-wide survey of rare diseases found that it took longer on average for women to be diagnosed than men. For example, it took an average of 12 months for men to be diagnosed with Crohn’s disease, but 20 months for women. It took an average of four years for men to be diagnosed with Ehler’s Danlos syndrome but an average of 16 years for women. Women were also diagnosed with Cystic Fibrosis (CF) later than men, which the report found "surprising" given that the life expectancy for women with CF is shorter than that for men. The report noted that women were often diagnosed later because their pain was dismissed as psychological symptoms or common complaints. 

Emilie Pine is Associate Professor in Modern Drama at University College Dublin and author of Notes to Self, a collection of personal essays. She says that she felt that "only parts" of what she had to say were listened to during her experience with infertility. "There was a set of standard questions and beyond that my experience was not valued. At no point did it feel like a conversation between equals, but always felt as if I was petitioning for attention and a semblance of guidance or answers," she says. 

From RTÉ Radio 1's Marian Finucane Show, an interview with Emilie Pine 

Pine made the decision to seek out non-traditional medicine. Although acupuncture was not effective "in the sense of making me pregnant, the experience of being listened to by the practitioner was quite healing. In the fertility clinic, in contrast, it was astounding to me that I was politely ignored when I tried to talk about features of my menstrual cycle. This I thought was symptomatic of two things: not listening to women, and a lack of answers or interest in my experience outside the IVF system."

Later this year, Pine will be taking up a position as writer in residence at the National Maternity Hospital, Holles Street and she hopes it will be an opportunity to write about women’s health and the intersection between bodily and medical knowledges of women’s bodies. "I have an instinct that there is a lot to be excavated," she says. 

Many of the major controversies about maltreatment of patients have involved women being damaged

The Scally Report was published in the wake of the CervicalCheck scandal. It singled out the manner in which women and their families were told of the findings as varying from "unsatisfactory, to inappropriate, to damaging, hurtful and offensive." The women highlighted that most of the doctors involved in the disclosure (or non-disclosure) process were male.

"This, and the general way in which they felt they had been treated," Scally wrote, "led the women to develop concerns that the attitudes and lack of openness were accounted for by paternalism in the healthcare system. The point was made that many of the major controversies about maltreatment of patients or denial of reproductive rights in the Irish healthcare system have involved women being damaged. At the heart of this issue lies the willingness and strength to speak the truth, as well as the willingness and ability to listen when others speak it." 

Dr Ray O’Connor, is a Senior Research Fellow at the University of Limerick (UL) and Assistant Programme Director of the UL GP scheme. He explains that the importance of communication has been "very much basic bread and butter general practice training since day one." While the training doesn’t address gender bias specifically, "it tries to make people aware of all sorts of bias that they have" and all forms of discrimination. "We teach communication skills and self discovery – who are you, what makes you think the way you think, what makes you frightened, what kind of risks are you willing to take. So that you have the self knowledge and only then can you see how you deal with others," O’Connor says.

From RTÉ One's Nine News, the Scally report cites "whole-systems failure" over cervical screening

In 2016, Professor Chris Fitzpatrick, consultant obstetrician and gynaecologist and former Master of Coombe Women and Infants University Hospital, approached the Abbey Theatre in Dublin with an idea for positive change. The result was a play about stillbirth and an innovative, all-day training workshop for trainee obstetricians and gynaecologists at the Royal College of Physicians of Ireland (RCPI), devised through conversations with mothers, partners, healthcare professionals and midwives. Fitzpatrick recently told RTÉ Radio One's Damien O'Reilly (clip below) that he was aware of how "saying the wrong thing, particularly at moments of high sensitivity" impacted negatively on patients and on clinicians. 

Phil Kingston, Community and Education Manager at The Abbey, and colleague Jenny McDonald now lead two workshops for the RCPI, one developed to work with trainees on communication and one developed for consultants on open disclosure. The workshops are far from just "role play," Kingston explains.

The workshop developed for the consultants takes place on the Abbey stage, whereas the workshops for trainees take place at the RCPI. Kingston says the stage acts as a "stress tester" by "turning up the volume on how someone communicates, not just with words but with their whole body and being." The stage "amplifies what’s already there, including the stuff they don’t realise is there. You ask someone to go and say ‘I’m sorry, I made a mistake’ on a stage, that really pulls stuff out of them," he says. 

From RTÉ Radio 1, Phil Kingston, Abbey Theatre Community And Education Manager, and Professor Chris Fitzpatrick talk to Damien O'Reilly about drama workshops for consultants 

The idea is that the trainee workshop helps future consultants "breach the communication gap" and access the humanity and compassion that they already have, which inspired them to enter the profession in the first place, in those important moments where a busy doctor interacts with a mother "whose world is falling apart." At the same time, the Abbey training helps them "have some sort of resilience to carry on doing their job" while making sure the women are heard, Kingston explains. 

"Acting isn’t about putting on a mask to impress people, it’s actually about revealing more of yourself and so it’s really quite a personal approach that we take. These techniques are helping them to explore, in more depth, their profession, their engagement, their humanity and how they are and aren’t engaging with people in their job." While "doing something wordlessly is not an uncommon thing in a rehearsal room," Kingston says, "for people for whom that sort of exercise is new, this can be extremely, deeply affecting."

30,000 women are currently waiting to see a consultant gynaecologist

Funding was promised to a Women's Health Action Plan in budget 2019, but little progress has been made. Director of the National Women’s Council of Ireland Orla O’Connor pointed to the "hollowing out" of structures for women's health, while the Scally report recommended giving women’s health "consistent, expert and committed attention within the health system." Our two-tiered system is particularly unkind, as social determinants and inequalities continue to determine access to healthcare. 

Within the profession, roughly 41% of doctors in Ireland overall are female, which rises to 53% in the 25 to 34 year old age group, though women remain underrepresented at consultant level. Compounding the issue is a chronic understaffing of Ireland’s healthcare system. At present, 30,000 women are waiting to see a consultant gynaecologist. We have the third highest fertility rate in the EU and less than half the average number of specialists working in obstetrics and gynaecology. 

From RTÉ One News, a report on the 30,000 women waiting for outpatient gynaecology appointments, a 43% rise since 2014 

King says it’s very difficult to get someone to treat Endometriosis in Ireland and a lot of women are travelling abroad, some using the HSE Cross Border Health Directive. It’s a complex picture and "very under-researched area for the prevalence of it." There are only about three surgeons operating at a fairly high level in Ireland, who are "absolutely overwhelmed with referrals" and the difference in outcomes for patients using the two techniques to operate on the disease, ablation and excision, are considerable. 

"When you speak to any of the professional bodies, they will say to you that any gynaecologist can deal with endometriosis, but we know that’s not the case," she says. Other countries, like Germany and Austria, have accredited Endometriosis centres that provide surgery, but also associated services like physio and counselling.

It’s a model that could be easily adopted in Ireland, King believes. "We’re quite small, one centre would probably cover most of the country." GPs, who act as gatekeepers, need to be able to recognise the red flags and act on them and young girls need to be armed with the knowledge through the RSE curriculum, King says. 

From the Endometriosis Association of Ireland, what are the red flag symptoms? 

Women do end up "losing the will." Endometriosis is "seen as a women’s thing and it can get masked that way", says King. "Even when you report painful sex to your GP or gynaecologist, they can kind of look at you blankly and sort of go ‘and?’ You’re supposed to suffer that, put up with it for your partner, you know and you sort of think, 'hang on a minute here, this is crazy, I’ve got as much entitlement to have a good quality of life in all forms, no matter what',"

King went through seven ineffective surgeries before the eighth, using excision, and "the dramatic change in symptoms was literally overnight. It was just unbelievable the difference". Until last year, she was on "385 morphine equivalents" every day for her pain. "That’s hospice level medication. But you still have to function, you still have to get up, you still have to come in and do your work. It’s crazy to think that one surgery done right - it does sound a bit ideal - but we’ve seen where women have been referred to specialist surgeons early in their life and it’s been very good."

The views expressed here are those of the author and do not represent or reflect the views of RTÉ