The conference opened with Harriet Harman MP noting that women must not only be listened to, but also must be part of the decision-making process. It closed with the parents of Colette McCulloch, who died in 2016 whilst an inpatient at Pathway house. They spoke of years of frustrating misdiagnosis and lack of recognition of their daughter’s autism.
Particular topics of interest from the conference, which are very topical issues, include:
- The link between domestic assault and traumatic brain injury
- COVID maternity care potentially amounting to inhuman and degrading treatment
- Long COVID and the menopause
- Failures to recognise neurodivergence in girls and women
- Disbelief of those suffering from hyperemesis gravidarum, and how the same is now true of long COVID
Domestic Assault & Brain Injuries
There is increasing awareness of the prevalence of brain injury among the population, as well as greater understanding of the settings where such injuries are acquired. However, much of the focus is on settings where men acquire such injuries.
At the conference, Jocelyn Gaynor of The Disabilities Trust highlighted the research and work in HMP Drake Hall which showed:
- 64% of women in that prison reported a history consistent with brain injury;
- 62% got this brain injury through domestic violence;
- The average age the injury occurred was 25.
The histories included repeated blows to the head and non-fatal strangulation. Research suggested that brain injuries may explain why some women particularly struggle to comply with their parole requirements.
The link between brain injury and behaviour is an interesting one. My view is that, hopefully, the prevalence of brain injuries in women will start to be increasingly on the radar of clinical practitioners in all settings, particularly prisons, so that these women can get the full medical care and support they require.
Maternity Care & Human Rights
During the pandemic, resources were redirected to COVID, often at the expense of other medical conditions. In particular, visitors to hospital were largely not permitted, and partners of pregnant women were not permitted to attend hospital and medical appointments with them.
At the conference, Maria Brooker from Birthrights suggested that some treatment of pregnant women during COVID could amount to inhuman and degrading treatment. She spoke of a woman whose child was delivered by caesarean section, who was alone for the caesarean, and who was not able to see her partner until four days after the birth. One father was told his baby had died in a car park as he was not allowed into the hospital. In another case, the parents of a premature baby were going to be unable to see their child for 10 days; however, fortunately, the intimation of judicial review proceedings meant they were able to see their baby sooner.
Often, pregnancy and childbirth involve traumatic circumstances and much distress for the parents. In terms of clinical negligence, claims tend to be advanced for psychiatric injury, both on a primary and secondary victim basis. However, if partners are not present at the distressing peri-natal events, then there are likely to be issues with satisfying the proximity requirement for secondary victim claims, even though the distressing nature of the situation may well have been exacerbated by the inability of partners to be present. It is suggested that such issues may well instead fall under the auspices of human rights, including Articles 2, 3 and 8 of the ECHR. On some occasions, human rights law can be applied to clinical situations which fall outside of conventional clinical negligence claims.
“Who Mary Was”
At the conference, it was humbling to hear from Ernest Boateng, the widower of Mary Agyapong, a pregnant senior staff nurse who tested positive for COVID-19 and tragically died in intensive care five days after the delivery of their daughter.
Mr Boateng spoke of ‘who Mary was’: a kind, loving and compassionate senior nurse at Luton and Dunstable hospital. Mary was a mother to a two-year old son, AJ, and had a daughter, Mary, five days before she died on 12 April 2020 having suffered from severe COVID-19 pneumonia. She was working on the wards in her third trimester when the pandemic struck. She presented at A&E on 5 April 2020 after having collapsed with suspected COVID-19, but was discharged the same day.
Mr Boateng called for a public inquiry: “I believe as a society, it is important that we learn from all of the lives that have been lost as a result of this terrible pandemic and a public inquiry is the right way to address a tragedy of this scale”.
Mr Boateng has become a great advocate and campaigner for better protection of pregnant women at work, to prevent other families going through what his family has. It is important that lessons are learned from these tragic events.
As Harriet Harman MP said when opening the conference: “78% of black women do not believe their health is equally protected compared to white people, and there is currently no plan in the NHS to acknowledge that and to deal with that”.
Long Covid & the Menopause
There are many aspects of COVID-19 attracting clinical research; however, there are some areas which have fallen under the radar. At the conference, Dr Louise Newson of Newson Health Research highlighted the worrying lack of research looking at the relationship between the menopause and long COVID.
Women are 50% more likely to report long COVID, and women are more likely to have persistent symptoms. The link between long COVID and the (peri) menopause is an important one, because oestradiol (an oestrogen steroid hormone which drops off during the menopause) helps prevent severe infection. This may explain the higher incidence of sepsis in males than in pre-menopause females, and also why men suffer from ‘man flu’.
Dr Newson highlighted: “There are significant health risks associated with menopause, yet the resources to help treat and advise women are not available through the NHS.”
Unfortunately, this is nothing new, and it has been widely reported that health conditions affecting women have been under-researched. Hopefully, in the future, there will be more academic studies focusing on COVID-19 and the menopause.
Problems with diagnosis
The Dangers of False Narratives
Another issue with women’s healthcare is the interpretation of women’s self-reported symptoms by medical practitioners. There have been problems with women’s pain and symptoms being downplayed or disbelieved by medical practitioners.
At the conference, Dr Margaret O’Hara of Pregnancy Sickness Support spoke of the “gaslighting” of women suffering from hyperemesis gravidarum (extreme pregnancy sickness, “HG”), with medical practitioners suggesting it was psychosomatic or could not last past 12 weeks of pregnancy. Shockingly, Dr O’Hara noted: “Between 5-15% of women with HG will terminate a pregnancy because they can’t get treatment for it.” Dr O’Hara explained how damaging the false narratives surrounding HG can be for women, and, linking to a previous topic, how the same can now be said for the narratives surrounding long COVID.
Autism and Neurodivergence in Girls & Women
A further concern in women’s healthcare is the missing of diagnoses, due to women and girls not presenting with a condition in the same way as males.
Claire Farmer, co-chair of the Autistic Girls Network, spoke at the conference of the need for training to help recognise neurodivergence in schools, workplaces and local authorities. She highlighted that too often autism goes unrecognised and unsupported in girls and women because they seem “fine” at school and present differently to boys.
Andy and Amanda McCulloch, parents of Colette McCulloch, spoke of the many diagnoses given to their daughter before she was finally diagnosed with autism. Colette tragically died aged 35 when she was hit by a lorry on the A1 in the middle of the night while a voluntary patient at Pathway House. Her parents spoke of the multiple failures to recognise her autism, for her to be supported and believed.
“After 21 years the root cause of Col’s distress had been diagnosed, but far too much psychological damage had already been done.”
Colette’s parents read from their daughter’s diary, which Colette liked to call her autobiography: “it’s dark, no one will lift a hand, no one will listen to me … I really cannot understand the language you speak”.
The key take-home point was that more must be done to plug the data gap in women’s health issues, whether that is research into the menopause and long COVID, or research into the causal connection between domestic assault and brain injury. We also need greater clinical and social understanding of neurodivergence so that girls and women with autism are swiftly diagnosed and supported.
Further, women, and particularly black women and women from ethnic minorities, need to not only be listened to, but to be part of the decision-making process which shapes their health, their baby’s health and the future. Effective communication from treating practitioners is key, to ensure that concerns are heard and that informed consent is properly taken.
Overall, the key theme is one of absence – of women’s health, pain and suffering being inadequately researched, reported and recognised. These issues are now being identified, and, hopefully, in the near future, progress will be made in rectifying these issues.