Women’s Health Outcomes

Baroness Thornton Excerpts
Thursday 8th July 2021

(3 months, 1 week ago)

Lords Chamber

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Department of Health and Social Care
Baroness Brinton Portrait Baroness Brinton (LD) [V]
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My Lords, I echo the thanks of the Chamber to the noble Baroness, Lady Jenkin, for securing this important debate. Along with the noble Baronesses, Lady Jenkin, Lady Massey of Darwen and Lady Walmsley, I was trustee of UNICEF. Its work to help educate and protect girls and young women in dangerous countries across the world—of which the noble Baroness, Lady Nicholson, spoke so movingly, when talking of the horror of rape for girls and women in war-torn communities—demonstrates that we absolutely need to support United Nations projects to protect girls and women throughout the world. The noble Baroness, Lady Nicholson, is right: we need worldwide action to eliminate this scourge.

The noble Baroness, Lady Jenkin, was so right to set this debate in the lifecycle of a woman. She gave us a female equivalent of Shakespeare’s seven ages of man and, while it may not have been in iambic pentameters, it was striking in its arguments.

The noble Baroness, Lady Penn, faces the glorious arrival of a baby. I want to offer, as other noble Lords have done, best wishes for a safe arrival and a hope that, if the baby is a girl, her daughter’s experience of health will be very different from her mother’s and her grandmother’s. Predominantly male medics told us what they thought we had and wanted but, too often, I am afraid, had not listened to us before they spoke. Much has improved over the years, but there is still room for improvement, as this debate has shown.

The noble Baroness, Lady Bull, talked about the incidence of eating disorders, and how important it is that young women are listened to and supported—and, of equal importance, have access to specialist medical help early on.

The noble Baroness, Lady Massey of Darwen, focused on the problems that many women face with mental health today. The Royal College of Psychologists is right to set out the need for an extra £500 million of funding to ensure that they get the tailored support they need, when they need it. There are too many long delays in CAMHS.

My noble friend Lady Walmsley and the noble Baronesses, Lady Bottomley and Lady Bennett, were spot on to remember the failures that fell to the women with valproate and vaginal mesh problems, investigated by the noble Baroness, Lady Cumberlege, in her excellent report. When will the Government implement the key recommendations from that report, particularly the patient safety commissioner?

My noble friend Lady Walmsley also referred to domestic violence. There is no doubt that the healthcare providers can help to spot signs of concern early on. But the BMA has reminded us that healthcare professionals need training early on and support from other agencies to make that happen. That most women wait until in excess of 30 incidents before they go to the police is shocking, but GPs, nurses and midwives are often able to assist women in recognising that they are facing problems early on, and help them to deal with that.

It is extraordinary that women have a much higher level of autoimmune diseases than men. With some diseases, it is 80% higher. Researchers are still trying to understand why, but serious autoimmune diseases can still significantly reduce lifespan, or the patient has to face many years on immune suppressants to prevent the disease progressing. In this year of Covid, that has of course given them further problems. Endometriosis, which happens to be my second autoimmune disease, introduced me as a young woman to the indignity of the mostly male doctors managing my condition and its consequences for fertility, high miscarriage risk and a life of severe pain, which hardly any medics understand. That GPs think it is just like a bad period pain completely misses the point.

The noble Baroness, Lady Greengross, referred to contraceptive services and their supply during the pandemic. She was right to say that women need to be able to access those services all year round, and throughout the United Kingdom, because failures can have serious consequences for young women.

The noble Lord, Lord McColl, ably set out a range of women’s services where other countries are setting us good examples of how we can improve the lives of women, including respite care for the many unpaid carers, mainly women. His point was echoed by the noble Baronesses, Lady Eaton, Lady Fraser and Lady Ritchie. The noble Baroness, Lady Fraser, also gave us an excellent example of combining data to cross-reference women with epilepsy and their medicines. She said, “If you’re not counted, you don’t count”. I am reminded here that the suffragists scrawled “Votes for women” across the 1911 census and are visible to history, whereas the suffragettes chose just to boycott the census, so their contribution is invisible to history.

The noble Baroness, Lady Bennett, and the noble Lord, Lord Hunt, talked about women’s cancer diagnoses coming significantly later than men’s. I know that other Members of your Lordships’ House have faced this, but we have a close family member whose 34 year- old daughter missed her cervical smear test last year because of the pandemic and now is facing terminal cancer. That is really shocking. The noble Lord, Lord Hunt, rightly reminded us of shocking failures at some maternity hospitals. While it is good that reports are now highlighting these failures, is there also a systematic review of the funding and staffing of maternity services across the country, as most of the reports refer to staff shortages as well as problems with the culture?

The noble Lord, Lord Rooker, vitally reminded us of the Marmot report and how it set out the problems that women face in society today, especially in Northern Ireland. One of the topics in the Government’s consultation paper was on using data to improve women’s experiences. How is this sort of data shared and used to understand the disparity between the four nations?

The noble Lord, Lord Brooke, and the noble Baroness, Lady Bryan, talked about the male-female inequality league and how the UK should do better. How do the Government plan to address some of the clear health disparities?

The noble Baroness, Lady Greengross, also talked about continence services. Twenty years ago, discussion of periods in public was pretty taboo. Endometriosis and the menopause have recently become more acceptable issues to discuss but, frankly, continence services remain taboo for many. Women who often face long-term problems after difficult childbirth are unable to seek the help they need when their bladders start to fail in the later years. I hope that this debate will help to start that discussion and encourage women to seek help from their GPs at an early stage.

Recently, I had some discussion with young doctors working with the elderly—mainly women—who fell and broke limbs, imperilling their independence and ability to stay at home. These doctors are looking at best practice on early intervention with these patients, after minor falls, that supports and trains the patient. This has already significantly reduced the serious falls that too many women have later on. It is also saving the NHS a vast amount of money and keeping these women independent for much longer.

The noble Baroness, Lady Uddin, and the noble Lord, Lord Boateng, raised the problems of unconscious bias and the stereotyping of black and Asian women. I am sorry to say that this is also true of LGBT women. My noble friend Lady Barker has often spoken of the need for specialist geriatric services for them. Those who claim to object to the woke agenda need to understand that these biases—conscious or not—are the root of women’s health inequality. The contribution of the noble Lord, Lord Sikka, pointed at how the voices of, and services for, women were invisible in the Budget. Today’s debate has shown that this House is keen to see the eradication of all health inequalities affecting women, and I look forward to hearing the Minister’s response.

Baroness Thornton Portrait Baroness Thornton (Lab)
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My Lords, I declare my interest as the maternity champion for Whittington Health, of which I am a non-executive director. I congratulate the noble Baroness, Lady Jenkin, on bringing forward this debate, which has been of very high quality. Her introduction was both comprehensive and—although I am not sure that I would say Shakespearean —encompassed the whole of life.

I am particularly proud of my nine or 10 noble friends who took part in this debate. My noble friend Lady Massey talked about young women; my noble friend Lord Rooker talked about health inequalities and Marmot; my noble friend Lady Chakrabarti talked about our international responsibilities; my noble friend Lord Hunt talked about heart attacks and discrimination —I will come back to that later—my noble friend Lord Boateng talked about the higher rates of mortality for black people and racial disparities within healthcare; my noble friend Lord Brooke talked about learning the lessons of domestic violence; my noble friends Lord Sikka and Lady Bryan talked about the misdiagnosis of symptoms and inequalities in health; and my noble friend Lord Young talked about single-sex wards. But contributions have come from all sides of the House. I welcome the women’s health strategy consultation: I very much look forward to seeing what comes out of that.

As did the noble Baroness, Lady Jenkin, I want to address the systematic discrimination against women and the gender data gap. She and several other noble Baronesses mentioned Caroline Criado Perez and her work in this area. She said that medical research has traditionally been based around the male body. Indeed, my noble friend Lord Hunt pointed out that women were 50% more likely to be misdiagnosed following a heart attack, but they make up only 25% of the participants across the landmark trials for congestive heart failure. Given that we have a Minister in this House who is very enthusiastic and keen about data and its use and all those things, this issue is very important.

Most medical trials are done on male cells; even female cells react differently. For millennia, medicine has functioned on the assumption that male bodies represent humanity as a whole. As a result, we have a huge historical data gap when it comes to female bodies. That means that women will be dying when they do not need to. The medical world is complicit in this and that needs to change. I am pleased that this was referred to in the women’s health strategy. I hope that it is going to be followed up when the strategy comes to fruition after the consultation process.

It is interesting; I learned, for example, that the first production of the Fitbits that we are all so keen on did not include menstrual cycles in their data, so over 50% of the world was not properly recognised. I am assured that that is absolutely no longer the case. The tech world, of course, is designing the future, so we have to acknowledge the need for diversity in that. If tech is designed by white, middle-class men from America, the future might look very nice to them but not for everybody else. Diversity in the teams and ideas is vital. Artificial intelligence that helps doctors with diagnoses and scans, and with conducting job interviews and so on, is vital, but it all depends on the datasets. If those datasets are designed by those white males in America, then we are all—or at least half of us are—in serious trouble. If you tell an algorithm what a heart attack is based on male symptoms, how are we going to make sure that it recognises female symptoms? These are the issues on which I am particularly interested to know the Minister’s thinking.

I turn briefly to women and Covid. We know that Covid-19 did not strike the sexes equally. Globally, for every 10 Covid-19 intensive care unit admissions for women, there were 18 for men. While men over 50 tended to suffer the most acute symptoms of Covid, there is evidence that women seem to be disproportionately affected by long Covid; one study suggested that women outnumber men by as much as four to one. A study led by the University of Glasgow concluded that

“women under 50 are seven times more likely to be breathless and twice as likely to report fatigue than men, seven months after seeking medical assistance for Covid-19.”

Some academics have linked this to the fact that women have a higher lifetime risk of inflammatory immune conditions such as chronic pain, chronic fatigue and autoimmune diseases. Can the Minister assure us that these issues are a standard part of the ongoing research on the effects of Covid?

A key point that came out when the strategy was first announced by the Government was the need to listen to women’s voices. That is absolutely vital. The House has been active in expressing the need for this, particularly in support of the report by the noble Baroness, Lady Cumberlege. We have made significant progress in implementing some of her report and I hope that we will see more of it included and embedded in the forthcoming legislative programme on health and social care.

To conclude, I thank all speakers who have taken part in this debate, and I look forward to the Minister’s speech. We live in a patriarchal and deeply unequal society. Covid has highlighted those inequalities, particularly health inequalities, and it must be said that, since 2010, the noble Baroness’s Government have been guilty of cuts and underfunding across the whole of our health system, which has disproportionately affected the poor—and that means it has disproportionately affected women. I hope that the noble Baroness, Lady Jenkin, and the Minister will agree that having the best possible women’s health strategy in the world will, as it were, butter no parsnips if it is not properly resourced and funded.

Lord Bethell Portrait The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Bethell) (Con)
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My Lords, I join all those who have commended my noble friend Lady Jenkin of Kennington for tabling a debate on this incredibly important matter. I congratulate her on smashing through dozens of anatomical taboos in such a splendid fashion in her extremely important opening remarks.

I believe that, as has been discussed today, the problem statement under debate is very clear—Nadine Dorries said it in another place earlier today, and it was echoed by the noble Baroness, Lady Bull: for generations, women have lived with a health and care system that is mostly designed by men for men. That is the problem. As a result, despite making up 51% of the population, women have been underrepresented in research, face damaging taboos about their health and, despite living longer than men, spend a greater proportion of their lives in ill health and with disabilities. For these reasons, there has never been a better time to put an emphasis on women’s health.

So I am extremely pleased that, on International Women’s Day, the Minister of State for Patient Safety, Suicide Prevention and Mental Health announced in another place the launch of the women’s health strategy for England. As noble Lords have mentioned, it asked for responses across six themes, and I think it is worth mentioning them, because they are the architecture of how we will approach this strategy. The first is

“Placing women’s voices at the centre of their health and care”;

the second is

“Improving the quality and accessibility of information and education on women’s health”;

the third is

“Ensuring the … system understands and is responsive to women’s health and care needs across the life course”,

and this was so articulately explained by my noble friend; the fourth is

“Maximising women’s health in the workplace”;

the fifth is

“Ensuring research, evidence and data support improvements in women’s health”,

as was explained very well by the noble Baroness, Lady Brinton; and the sixth is

“Understanding and responding to the impacts of COVID-19”.

As has been mentioned, we had 112,000 submissions, which is an absolutely remarkable number and speaks well of the engagement that has gone on around this important issue. There have also been focus groups, and departmental Ministers have led a number of engagement exercises. I was delighted to chair two very important and revealing round tables and a series of one-to-ones with leading women in healthcare. This engagement is why we launched the call for evidence in the first place.

There are a number of challenges that cut across the area of women’s health, and I will mention two or three of them. We have a world-class research and development system in the UK, but, as the noble Lord, Lord Hunt, quite rightly pointed out, we know that women have been underrepresented in research and clinical trials, particularly women from ethnic minorities—as the noble Baroness, Lady Uddin, pointed out—older women, women of child-bearing age, women with disabilities and LGBT women.

Women are not a homogenous group, and research must continue to understand and tackle specific dimensions of inequality to ensure equitable health outcomes across the population. While researchers and regulators have historically believed this to be good for women and babies, largely due to legitimate concerns about potential risks to an unborn child, too often women have been excluded from these discussions and have not been given the choice to participate in trials and studies. I agree with the noble Baroness, Lady Ritchie: we absolutely must work hard to change this and give women the choice to partake in clinical trials.

I will say a word about women’s conditions that are not being researched enough, which was highlighted by the noble Baroness, Lady Thornton. She is entirely right: there are still too many conditions about which we know too little. A key example of this is endometriosis, raised by the noble Baroness, Lady Brinton, in her personal testimony. A number of noble Lords have articulated the key fact that it takes seven to eight years for a diagnosis, with 40% of women needing 10 or more GP appointments before being referred to a specialist. If it was a man, I fear that it would be very different indeed. Menopause, mentioned by my noble friends Lady Jenkin and Lady Altmann, is another good example of this.

This lack of understanding of female conditions has implications for the health and care that women receive. Data is key and data saves lives—I am a big believer in that. To reassure my noble friend Lady Fraser of Craigmaddie, that is why

“Ensuring research, evidence and data support improvements in women’s health”

was one of the key themes of the call for evidence, and it will be a key theme of the strategy going forward. I completely agree with my noble friend that we must work hard to ensure that women, and women’s health issues, are included in research and data collection, finally ending the gender data gap that sadly exists.

Men are too often the default, and we do not know enough about the conditions that manifest differently in men and women. This can and does lead to poorer health outcomes, as vividly explained by my noble friend—I think it was Lady Bottomley; I cannot read my own writing. A University of Leeds study showed that women with a total blockage of a coronary artery were 59% more likely to be misdiagnosed than men and found that UK women had more than double the rate of death in the 30 days following a heart attack. I completely agree with the noble Lord, Lord Hunt: this just is not good enough. I would be glad to meet with the noble Lord, Lord Young of Norwood Green, to discuss the issue of mixed wards.

Too often, women are not listened to, and unfortunately we see this at all levels of the healthcare system, whether it be reports of women having their pain ignored during gynaecological procedures—such as IUD fittings or hysteroscopies—or the sobering findings from independent reports such as the Cumberlege review or the Paterson inquiry. One of the driving forces behind the decision to launch a women’s health strategy was the findings of the Cumberlege review; this is one of the manifestations of our response. I am enormously grateful to my noble friend for her work on this report and to many others in the House who have championed its work. The report powerfully highlights how the system did not listen to women. I am aware that today is the review’s first anniversary, and a debate has just taken place in another place to mark the occasion.

The Written Ministerial Statement of 11 January provided an update to Parliament. This included that the department had accepted the report’s flagship recommendation: the establishment of a patient safety commissioner. We also announced in this Statement that we had accepted recommendations concerning specialist mesh centres, MHRA reform and the establishment of a medical devices information system. I reassure the noble Lord, Lord Brooke, the noble Baronesses, Lady Bryan and Lady Brinton, and others who asked that we are carefully considering the remaining recommendations and 50 actions for improvement. It is imperative, for the sake of patients and especially those who have suffered greatly, that we give this independent report the full consideration it deserves. In the January Statement, we announced that we would establish a patient reference group to work alongside the department to develop a full response. I am happy to confirm that the group was established earlier this year and has been working closely with officials to consider the report’s recommendations. I can assure Members that we will publish a comprehensive government response later this year.

On a positive note, can I say a few words about the good things that are happening in this area? The National Institute for Health Research is actively seeking to improve participation of underrepresented groups, and I would like to highlight the work of the NIHR INCLUDE programme. INCLUDE provides a design framework for clinical research proposals and gives examples of good practices and resources. The move towards virtual trials, due mainly to the pandemic, will accelerate that. The NIHR funds a wealth of research on women’s health and their outcomes. A couple of examples are the recently funded £2 million trial on endometriosis and the Policy Research Unit in Maternal and Neonatal Health and Care.

On long Covid, I completely agree with the noble Baroness, Lady Thornton: this is a gender challenge. The statistics are quite clear about that. I reassure the noble Baroness that the Government are doing everything we can to listen to and learn from all those suffering from the long-term effects of Covid, including women. I have heard first-hand the insights and experiences of people living with this new and debilitating condition. The noble Baroness, Lady Chakrabarti, is right: long Covid is a new challenge for healthcare systems around the world. I am proud that the UK is leading the way on excellent research, treatment and care. We are investing heavily in research. REACT Long COVID—REACT-LC—aims to better understand the genetic, biological, social and environmental signatures and pathways for long Covid. Through its efforts, supported by £50 million of research funding, we are learning more every day about long Covid. We have 89 new specialist assessment centres opening up around the country, and they are having a huge impact.

I will say a word about maternity services. The Government are committed to reducing inequalities in health outcomes and experiences of care. This was articulated very persuasively by the noble Lord, Lord Boateng, and the noble Baroness, Lady Uddin. In September 2020, the Minister for Patient Safety established the Maternity Inequalities Oversight Forum to bring together experts to address the inequalities for women and babies from different ethnic backgrounds and socioeconomic groups. We are working to ensure that, by 2024, 75% of black and Asian women, and a similar proportion of women who live in the most deprived areas, will receive continuity of care from their midwife throughout pregnancy, labour and the postnatal period.

Maternal healthcare is absolutely critical, as the noble Baroness, Lady Massey, rightly alluded to, and maternal mental health has been neglected. Five years ago, 40% of the country had no access to specialist perinatal mental health care. I am proud to say, in response to the questions on training from the noble Baroness, Lady Walmsley, that there are now specialist community perinatal mental health services in every CCG area in England, with more than 700 specialist front-line staff recruited in the last two years. We are committed to transforming specialist perinatal mental health services across England.

By way of winding up, and on a personal note, I will point to my own experiences in this area and tell the story of my mother, who was hard hit by postnatal depression. It is a condition that we now recognise to affect 15% of mothers, as the noble Baroness, Lady Thornton, said. In the days when I was born, this condition was neither diagnosed nor treated. My mother developed mental illnesses, drug addiction and alcoholism, and was therefore stigmatised by the healthcare system and separated from her children by the courts. Her treatments were barbaric, including electric shock treatment and drugs that made her bloated and sick. She had a relationship with her GP—something that would absolutely not be tolerated now and did nothing to help her then. No one listened to her, the diagnosis was flawed and the treatments were medieval. The system abused her, and she passed away in her bath. I think it is fair to say that she died of being a woman. It had a profound effect on me, and I would not want that to happen to any woman or child again.

Those times have largely passed. The world has got better, but it has not changed enough. That is why my noble friend Lady Jenkin’s debate is so important: it demonstrates that the outline of the problem definition is very clear. It is why this consultation is so important: it ensures that we really have all the details from the people whose voices have not been heard. It is why this women’s health strategy is so important: it will give us a common plan to do something about a problem that has dogged our healthcare system for too long.