A matter of life and death: the case for a medical Me Too movement

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How often do women feel that they have been treated badly, misdiagnosed or dismissed in the Irish healthcare system simply because they are women? A Twitter question posted for Review this week to gauge their experiences brought a shocking reaction.

omen answered in their hundreds, describing experiences that ran from the disheartening to the downright disturbing. Among them:

“Reviewing my pain meds, a doctor at the pain clinic said, ‘Antidepressants? You don’t need those, sure you’re smiling and joking’… and somehow managed to work in, ‘And you have great tits’.”

“I spent years building up the courage to go to my GP about pain during sex. When I finally did, I was dismissed and told to just ‘use more lube’.”

“I suffered quite badly with PMS for two weeks every month, symptoms including suicidal thoughts, depression, pains and aches, etc. When describing this to my GP, he asked if I was single and when told yes, he asked if I’d consider getting a boyfriend.”

“A midwife blamed my inability to manage my low iron for the cause of my first two miscarriages. I started bawling, and felt I was to blame. She then said I seemed highly strung and maybe I should take up yoga.”

“When I asked for the coil, I saw an older male consultant who came in, took my history and heard I was recently married and said, ‘Sure you’ll want to get pregnant soon, so why would you want one. You’ll want it out in no time’.”

“My GP refused to take the contraceptive bar out of my arm until I agreed to go on a double dose of the pill just in case I might have an accidental pregnancy that might lead to an abortion.”

“I asked to have my tubes tied after having three children, the surgeon said he would need a note from my husband.”

“Was told ‘hubby has spoken’ when the doctor only agreed to a caesarian section when he spoke up on my behalf.”

“It took me 11 years to get a PCOS [polycystic ovary syndrome] diagnosis. Every time I went to a doctor throughout my late teens and mid to late 20s, I was told to go on the pill and come back when I wanted a baby.”

“I was bleeding heavily for 10 days mid-cycle with huge clots and in a lot of pain. The male doctor in A&E was so patronising and eventually hushed me away saying, ‘You women and your women problems’.”

Some refer to the casual misogyny of a certain generation of healthcare professionals, others a disdain of female sexuality, others the influence of the church and patriarchal attitudes.

There is little arguing that Ireland has had a complicated history when it comes to women and healthcare.

In the early 1960s, the government decided not to issue a public warning about the dangers of the morning sickness drug Thalidomide, because such a move was regarded as ‘undesirable’.

In 2015, nearly 200 women accepted payments under the government’s surgical symphysiotomy payment scheme. The procedure, which was performed between 1944 and 1984, involved breaking the pelvis during childbirth to allow a baby to be born. In some cases it was conducted without the patient’s consent and its reported side-effects included pain, reduced mobility and incontinence.

In 2012, the death of Savita Halappanavar in Galway University Hospital from sepsis after being refused an abortion brought a shift in public opinion. So did the 2018 legal case taken by Vicky Phelan, which brought the CervicalCheck scandal to light.

More recently, a discussion on RTÉ Radio 1’s Liveline highlighted that a lack of information and communication persists when it comes to diagnosis and treatment of the menopause.

At the same time, it is being acknowledged that endometriosis, a condition where uterine tissue grows outside the womb, continues to be poorly understood, despite an estimated 155,000 Irish women suffering from it. A complex set of variables in this condition can lead to an average diagnostic delay of about nine years.

The confluence of these factors prompts the question: is Irish healthcare due, or about to have, its own MeToo moment? With taboos breaking down, women are speaking out against what they perceive as inadequate treatment in the healthcare system.

‘Viewed as a niche issue’

After the referendum to repeal the Eighth Amendment and the wider #MeToo movement about sexual abuse, Irish women are becoming ever-more informed about bodily autonomy and consent. This is leading many to question what is often described as the paternalistic nature of healthcare.

“There’s a temptation to pigeonhole women’s health as something that’s niche, or separate,” says Dr Amy Morgan, a Louth-based GP. “Hopefully, this is a tipping point moment. If you look at the recent conversations about the menopause, it’s moved from being a niche issue to an issue handled by government [to allow] us as GPs to be able to help women and get the treatment they want and deserve.”

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‘There’s a legacy issue’: Dr Amy Morgan in her Drogheda surgery. Photo by Frank McGrath

Kate O’Connell, who was a Fine Gael TD for Dublin Bay South from 2016 to 2020, runs a pharmacy in Rathgar with her husband, Morgan.

“I notice as a professional, you hear women saying that if they question certain senior doctors, their referral note will say something like, ‘patient asked many complex questions’, which is probably code for ‘keep an eye on this one’,” she says.

During her political career, O’Connell often found herself as the only woman, or one of two women, in certain important health discussions.

“When [CervicalCheck campaigners] Vicky Phelan and Stephen Teap were brought into the Public Accounts Committee, I think me and Catherine Murphy were the only two other women in the room,” she says. “The story had to be told to a majority male audience. I don’t think that serves anyone well.”

It is not just in patient-facing situations where gender bias can be evident. Globally, women have often been excluded and under-represented in clinical trials and ‘female’ conditions have historically been underfunded and under-researched.

“They still are today,” says Jill Delston, the US author of Medical Sexism: Contraception Access, Reproductive Medicine and Health Care. “And we are also dealing with this backlog. If we didn’t research something for 50 years, even if we start now, we are starting from behind.”

Even in conditions that also affect men, the way they affect women can be less understood.

“The common, most famous symptom of a heart attack is chest pain, clutching your chest and keeling over,” Delston says. “That’s the symptom we mostly associate with heart attacks, and yet only one in eight women who have heart attacks experience that symptom.

“Instead, women can experience extreme fatigue or back pain, not chest pain. And so if doctors are not studying heart diseases in women, then they’re going to see this women come into their office with that kind of extreme fatigue and not associate it with heart attacks, and so patients are not going to be able to recognise when they’re in danger, to some degree. That’s why medical sexism is such a matter of life and death.”

Delston believes a paternalistic attitude has persisted in women’s health “in ways that it wouldn’t be tolerated in among conditions that primarily impact men”.

“There is an implicit attitude that women don’t have full capacities and therefore can’t be in control of their bodies,” she adds.

As widespread attention is brought to the issue of medical sexism, a sea change could get under way. “I think women are saying, well, this is intolerable’,” she says. “I think aiming for more inclusivity and more diversity in our [medical] research and in our standards of care can ensure that all people are treated better and more justly.

“I never want to say to women, ‘here’s what you can do to defend your rights’,” she adds. “It’s not on you. Don’t put the responsibility on the victim to solve the problem. Put the responsibility on the doctor.”

Patients who want to make a formal complaint about a healthcare practitioner have a clear pathway to do so, says Eleanor Newman of the Medical Council, which regulates doctors registered in Ireland.

“Once a complaint is made against a doctor, it is investigated by the preliminary proceedings committee, who decide whether it warrants further action and provide recommendations to the Medical Council,” she says.

“If further action is warranted, the complaint may go to a fitness to practise inquiry, or the doctor may be referred for an assessment of their knowledge and skill… or mediation may be suggested.”

The number of complaints to the Medical Council about “communications issues” remains high year on year. In response, Newman says, it is taking steps such as “ensuring communication becomes mandatory as part of continuous professional development, and working with our stakeholders, training bodies and employers”.

Dr Noirín O’Herlihy, director of Women’s Health with the Irish College of General Practitioners (ICGP), says that the wider sector is taking action.

Her organisation is represented on the Department of Health’s Women’s Health Taskforce, which, she says, has undertaken “a radical listening exercise with women”.

“Many women have portrayed their open and trusting relationship with their GP; however, women also felt unsupported, ashamed, embarrassed and rushed in some of their interactions with healthcare professionals,” she says.

“We have had an unprecedented level of requests from our [GP] members for education on menopause, illustrating the desire of many of our members to meet their patients’ needs effectively. We have a number of educational sessions available over the summer months to meet this demand.” A course in community gynaecology, to be delivered from September, will incorporate preventative healthcare and communication skills.

Positive change

In April, Health Minister Stephen Donnelly announced funding for the further development of gynaecology services and an enhanced endometriosis service. His predecessor, Simon Harris, established the Women’s Health Taskforce in September 2019. In addition to investment specifically for women’s health in the 2020 budget, an additional year-on-year fund of €5m has been allocated to support the taskforce.

Rachel Kenna, the chief nursing officer in the Department of Health and the lead advocate for the Women’s Health Taskforce, also believes positive change is under way.

“We work in collaboration with HSE staff, the Institute of Public Health and in collaboration with the Women’s Council of Ireland to represent the voices of women,” she says.

“Our first priorities are to improve gynaecological health, to improve support for menopause, physical activity for women and girls and mental health among women and girls. With our ongoing radical listening exercise, this is a large-scale consultation with women across the country. Work is still ongoing, but common themes have emerged which speak to many experiences we’ve heard from women.”

The results of this work will be evident this year, she says.

“I think there’s a strong voice out there, and getting stronger, ” she adds. “There’s a huge recognition that women have specific health issues that haven’t been at the forefront of policy. For us, it’s about bringing to light issues that were never spoken of before, and in the same way as other services. That to me is an exciting time.”

Kate O’Connell believes that lasting systemic changes need to come from the top down.

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Pharmacist and former TD Kate O’Connell. Photo by Steve Humphreys

“If you have a state where it says in the constitution where a woman’s place is and what her level of aspiration should be, that’s ingrained in the constitution and ends up influencing policy decision,” she says. “I would strongly argue that the lack of female representation in Dáil Éireann leads to a lack of prioritisation in women’s health. People [in politics] generally bring issues to the table that are personal to them and they feel strongly about. Why would a prolapsed uterus be a male TD’s priority, unless he has specific experience in this area?”

Beyond Leinster House, Dr Amy Morgan detects a shift in attitudes.

“I meet women in their 60s who have disclosed things to me in terms of health symptoms that have been seen as ‘uncomfortable’ or ‘intimate’ topics. There’s a legacy issue there — they’ve had this attitude of, ‘I don’t feel I’ll be listened to, so I won’t bring it up’,” she says.

“Unfortunately, women have paid the heavy price of not having the confidence to speak up about issues before, but the younger generation are more confident and more assertive when it comes to empowering themselves.”

‘It wasn’t that long ago that women were diagnosed with hysteria. That hasn’t completely gone away’

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Wait for diagnosis: Evie Nevin (34) from Clonakilty, in Dunmore, west Cork. Photo by Daragh Mc Sweeney/Provision

Case study: Evie Nevin (34) from Clonakilty, Co Cork, recalls a number of times when she felt let down by the healthcare system over the years. After seeking a diagnosis for 12 years, she was eventually diagnosed with Ehlers-Danlos syndrome, a connective tissue disorder marked mainly by chronic pain and fatigue.

‘When I was 20 I went to a doctor and told him that it hurt to have sex, and that I had no libido,” she says. “I wasn’t investigated, but told that the more I did it, the more I would get used to it.

“Later, I was told it was all in my head, and that I was depressed. This went on for eight years. When I went to the doctor with chest pains, I was told it was stress. When I replied that I wasn’t feeling stressed, they replied, ‘Well, it must be subconscious stress’.”

On average, it takes men with Ehlers-Danlos Syndrome four years to get a correct diagnosis. For women, this wait is often twice as long.

“For women and girls, there is a lot of hormonal involvement so we present differently to men,” Nevin explains. “Clinically, there is evidence that women are in more pain with it, yet men are diagnosed faster.

“Being gaslit and fobbed off means I now have to use a wheelchair and walk with a cane occasionally.

“It wouldn’t have happened had I been taken seriously. When you think back, it wasn’t that long ago that women were diagnosed with hysteria, and that hasn’t completely gone away. We’re neurotic and emotional, but look, if you’re a person living in constant chronic pain, Christ, of course you will be emotional.”

For Nevin, the experience of interacting with the healthcare system started to exact a significant toll. “It got to the point where I felt, ‘What is the point of living?’” she says. “It was a really dark time. My family was my rock, and if I didn’t have that support in my life, I wouldn’t be here now.”

Communication should be part of healthcare practitioners’ training, she believes.

“There has to be a way for women like me to explain our [experiences] to professionals, and they need to learn from their peers’ mistakes and learn more about the long-term effects of fobbing women off and telling them it’s all in their head. That line especially is so dangerous.”

‘A doctor told me: Black women are so strong. You’ve got this’

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Blessing Dada, who says she experienced sexism in the healthcare system. Photo by Mark Condren

Case study: Blessing Dada (21) from Tallaght, Co Dublin, ­experienced many challenges as she sought a diagnosis for what would eventually turn out to be a severe case of fibromyalgia, a condition characterised by chronic widespread pain and a heightened pain response.

‘Ihad struggled with my mental health since I was 15, but when I presented with physical symptoms, I was told by a doctor, ‘Black women are so strong, coming from your culture. You’ve got this’.

“I was very annoyed about that, and being told to go for walks, yoga and fresh air,” she says.

“It had a domino effect on other areas of my life. Because of chronic pain, I lost my job in September 2019, and my college work was affected. I rang a doctor about this, and he told me he wouldn’t fill out a disability form [to claim disability benefit] for me, as I was exaggerating. A few months later, I had my first suicide attempt.”

Asked why she believed that the doctor had suggested such measures, Dada says: “I think it’s a mixture between my gender, my skin colour and my age. Whenever I had suggestions [for healthcare professionals] it was very, ‘I have the degree. You’re the patient’.

“They think I talk too much and I’m emotional. I can see it in their faces.”

‘Urologists still don’t believe me, so I travel to the UK for treatment’

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Lynda Spain from Drimnagh. Photo by Steve Humphreys

Case study: Lynda Spain (53) from Drimnagh, Co Dublin, had dealt with multiple urinary tract infections throughout her twenties, and GPs prescribed a number of short courses of antibiotics. As the symptoms persisted, she went to specialists who informed her that her bladder was highly inflamed.

Younger people are not taking any bulls**t any more,” when it comes to health, she says. “Through the internet I came across the Chronic Embedded UTI Facebook group, and found a British-based professor there.

“Urologists still don’t believe me here that I have an infection, so I travel to the UK for treatment,” she says.

“I remember asking the doctors what was causing this, and they told me there was no known cause. I felt they were getting really angry with me. I have brought evidence and research papers to [professionals], and they don’t like it.

“I’d say if this was a male thing, it would be very different. If you even look at something like Viagra, you can buy it over the counter, whereas for women going through the menopause, oestrogen cream can’t be gotten over the counter.”



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