Woman's Hour - Women's Health Special - Nadine Dorries, Unwell Women, Mesh removal centres, Autoimmunity

Episode Date: June 9, 2021

Women's health has long been the poor relation when it comes to medical understanding, funding and research. The government says it wants that to change - and earlier this year announced the establishment of England's first Women's Health Strategy, which will look at women's health across our lifespans. The priorities of that strategy will be shaped, they say, by the results of a public call for evidence which closes this Sunday. But after centuries of - as the Health Secretary Matt Hancock put it - 'living with a health and care system that is mostly designed by men, for men', what sort of confidence should we have in this strategy bringing about meaningful change? Emma Barnett is joined by Women's Health Minister, Nadine Dorries. Why are so many women dismissed, disbelieved or misdiagnosed when they seek medical help? Dr Elinor Cleghorn, cultural historian and author of 'Unwell Women - A journey through medicine and myth in a man-made world', says the answer lies in over a thousand years of history. She talks to Emma about the shockingly slow pace of change in attitudes to women's health, why women's pain still isn't taken seriously, and how the message that women's bodies are at the mercy of their thoughts and feelings has burrowed deep into our consciousness.In April this year, seven specialist mesh complication centres were launched in England to help treat women harmed by the use of pelvic mesh. These centres were recommended in a report by Baroness Cumberlege as a way of concentrating expertise and improving outcomes. But how are the centres working so far? And what are the fears and concerns still facing those women waiting for their mesh to be removed? Listener Judi tells us her experience, and Prof Hashim Hashim, a urological surgeon with specialist skill in mesh removal, explains why the surgery is so complicated and how medical professionals are trying to rebuild trust amid so much pain and anger.Around four million people have an autoimmune disease in the UK - so around 8% of the population. But of these four million, 78% are women. Reporter Carolyn Atkinson talks to Professor Lucy Walker about a new study into what might tie all these conditions together, and also Nina Christie, who currently lives with three autoimmune conditions.Presenter Emma Barnett Producer Anna Lacey

This BBC podcast is supported by ads outside the UK. I'm Natalia Melman-Petrozzella, and from the BBC, this is Extreme Peak Danger. The most beautiful mountain in the world. If you die on the mountain, you stay on the mountain. This is the story of what happened when 11 climbers died on one of the world's deadliest mountains, K2, and of the risks we'll take to feel truly alive. If I tell all the details, you won't believe it anymore. Extreme, peak danger. Listen wherever you get your podcasts.

BBC Sounds. Music, radio, podcasts. Hello, I'm Emma Barnett and welcome to Woman's Hour from BBC Radio 4. Today we are dedicating the whole programme to women's health in light of the government's public call for evidence to help inform England's first women's health strategy. That call for your experiences of our health system closes this Sunday so you still have time to submit. As the Health Secretary, Matt Hancock, put it, women have been living with a health and care system that is mostly designed by men for men.

Today, we're running our own evidence session, as we do here every day on Woman's Hour. And in a moment, I'll be joined by the Health Minister, Nadine Dorries. But I'd like you to feel that you can use this opportunity to share your experiences of healthcare. Did it work? Were you diagnosed? What was treatment like? The microphone is yours. Get in touch. 84844 on text. On social media, we're at BBC Women's Hour, or you can email me through our website. On a personal note, as someone for whom it took 21 years to be diagnosed with endometriosis, a debilitating painful period

disease and then adenomyosis, I can utterly relate. And I have to say there's no small irony as I sit here presenting a programme about women's health that I'm also in a significant amount of pain right now. There's no cure for my condition which affects one in ten women and takes an average of seven years to be diagnosed. But from one unwell woman to another, on today's programme, I'll be joined by Dr Eleanor Cleghorn, a cultural historian, author of The Unwell Women,

A Journey Through Medicine and Myth in a Man-Made World, and someone living with lupus who also fought for a diagnosis. And she'll tell us how to put all of this in context, why women's health has been the poor relation and continues to be so. We'll also be catching up on the vaginal mesh scandal and speaking to one of the UK's top surgeons in the difficult field of mesh removal. And take this in, 8% of people have an autoimmune disease,

but 78% of those are women. We'll hear about a groundbreaking new way of looking at autoimmune diseases from one of the people leading the research. But women's health then, the idea of it being the poor relation when it comes to medical understanding, funding and research, it's long been the case. The government says it wants that to change and earlier this year announced the establishment of England's first women's health strategy looking at women's health across our lifespans. The priorities of that strategy will be shaped, they say, by the results of England's first women's health strategy, looking at women's health across our lifespans. The priorities of that strategy will be shaped, they say, by the results of a public call for evidence,

which, as I say, closes this Sunday. Perhaps you've already submitted, maybe you're thinking about it. But after centuries, as the Health Secretary describes it, of living with a health and care system designed by men for men, what sort of confidence should we have in this strategy bringing about meaningful change? Nadine Dorries, the Health Minister with specific responsibility for women's health, joins us. Good morning. Good morning, Emma. Why now? Why have you asked for this now?

Gosh, well, I think it's probably right people in right places, uh myself and the former health minister caroline dynage were very keen that we uh no your your initial experience that you related your own experience and and that of others you know as female health ministers we're very aware of those uh those inequalities that women face when accessing health i think we've all got a story to tell. You know, I've got my own story to tell about patient safety. And so as I'm the patient minister for patient safety, I actually had patient safety put at the top of my portfolio so that that's my primary concern. And as part of that, I absolutely wanted to ensure that while I held this role that we did something about women's health and you know we've had over a hundred thousand responses from women across the UK which is

amazing. You may get a few more after this programme let's continue. I sincerely hope so Emma because what that does is gives us the mandate to ensure that this does bring about serious change for the future for women. Let's explore that. And of course, we'll give out the details at the end of our conversation. Do you think the NHS system is sexist? Well, I think there have been unconscious biases against women since the beginning of time. I think it's always been an issue. I'm going back to, you know, the whole connection between hysterectomy and hysteria and women's wandering wombs. And I think that's historically, genetically just passed through the ages.

And therefore, I think sexist is a strong word to use, particularly about a system which has a predominant number of female doctors and nurses working within it. But I think the system gets into the people who are working within the system and they become part of that system, possibly sometimes unknowingly. So busy, you know, our NHS staff are fantastic. So busy, perhaps not even aware that it's happening. But we have so many, so many examples in so many ways. The inquiries that I myself have commissioned and responded to.

Cumberledge, you're talking about Mesh today. Patterson in so many areas. Maternity inquiries. Women. It's always about women. I responded to a situation in the House of Commons yesterday. Again, it was vulnerable women being exploited. It's always women at the bottom of an inquiry or something that's going wrong within the NHS, or very often women. So the system, not the people, but the system is sexist?

I think it is. I think it is to a degree. I think it's a system which unknowingly maybe, but we've got to that situation. You know, women tell me so often the core theme of most of the inquiries and the reports that we have and the recommendations are women are not listened to. And I've experienced that myself. I know how it happens. I know how the system shuts down a complaint, shuts down a woman who may have issues with either treatment or

surgery or a wrong diagnosis i've seen it happen but you've also you know you've also got to make sure those services are available and i suppose what i when i was asking why now you've talked about the right personnel perhaps being in place there is a tendency to feel like when you announce this sort of thing, well, the Conservatives have just taken power. In fact, we've had you in charge for more than a decade. And Dame Professor Leslie Regan, former chair of the Royal College of Obstetricians and Gynaecologists, has told this programme that since 2012, 40% cuts to the funding of Public Health England, which commissions most women's wellbeing, sexual and reproductive health services, that women have been disproportionately worse off and disadvantaged by those conservative cuts. And now you want a women's health strategy. So there are two strategies running, Emma. One is the sexual and reproductive health strategy, which will report after the women's health strategy,

which is happening at the same time. so that that is being addressed the sexual and reproductive health strategy what the cuts are you going to reinstate money so um in terms of funding um emma we need to know so i'm here to talk about the women's health strategy and the reason i'm here to talk about women's health though and that feeds into it absolutely but what we need to where we are at this point now in the call for evidence, the first government ever to do this, is to find out what the issues are, the details of the issues. We have the reports about mesh, sodium valproate, primidose,

breast surgeons, maternity issues, but they aren't just it. We know there are huge issues around menopause, treatment, lack of menopause. But haven't you got to take responsibility for cutting money? Do you know what Dame Leslie also told us? She said that it's very difficult for women to access help at the moment with fertility, contraception, periods and menopause. This is the most senior obstetrician and gynaecologist in the country who's the author of the Better for Women Health Report in 2019.

These are cuts that your government did and created. So I refute that, Emma, because the evidence that we're receiving from women is not that they can't access services. What they are telling us is that when they do access services, which are there, there is, you know, all women can access contraceptive help via their GPs and all the services that you have listed. But our issue is deeper than that. It's more serious than that. It's when women are in services, when they're being seen, that they aren't listened to and they don't get the

treatment they want, not because it isn't available, because a doctor will prescribe them a course of antidepressants rather than a course of HRT. You cannot deny what one of the most senior doctors has said. You also cannot deny this fact that there have been cuts. Moreover, can you not deny between 2013 and 2018, there was a 14% real-term reduction in local authority spending on sexual health, depended on most by women. At the same time as those cuts, there was an increase in demand by 13%. You've told me you've only heard from 100,000 women or so. That's not necessarily going to tell you if they went

somewhere, couldn't get a service, is it? Well, what I do know, so sexual and reproductive health isn't in my portfolio, Emma, but what I would say is, it is not in my experience, and I haven't heard from the minister whose portfolio who is responsible for sexual and reproductive health that they're running the strategy they're they're doing their own call for evidence on sexual and reproductive health because we want to know what the problems are because we want to address them but my point is do you not need to take responsibility we want to address what those issues are because women are our priority because male is the default in health i understand that and that we want women to be our priority we know that here on women's are in our spades you really

are preaching to the converted but you still need to accept those cuts to services are you not accepting that as reality that there were funding cuts on section reproductive health i don't have the data emma so i can't argue the point with you because i don't have the data it is my portfolio but what i do know is that in women's so it's women's well-being as well i'm not just talking about sexual reproductive health that is in your portfolio so you don't know if there were cuts to it patient safety is in my portfolio and my experience is that maternity services in terms of accessing services to mental health and to the other issues that women have it is there they access the services via their gp referrals but their issues are not getting into the services but what happens to them when they get there okay

i can just make the point i can't even i can't even count the number of times women have told me that rather than being prescribed HRT, they're given antidepressants. And exactly that point is coming in. I promise you on all of these messages to do with HRT, so many of them say that. You're bang on the money with that. I was interested in the money provided. But let's talk about what you've moved on to, which is about women in a GP setting or another doctor setting being believed and getting the right treatment. At the end of last year, responding to a parliamentary report into endometriosis, you said this, I think women actually have a responsibility when they go to the GP's practice, not to take no for an answer, not to be fobbed off by a doctor. They do not push back. They do not challenge. They are not confident enough to raise an issue.

So they're very easily dismissed. Do you think it's women's fault, Nadine Dorries, if they can't get diagnosed or receive poor health care? No, but you've taken that quote out of a wider response, Emma. But no, I don't. But my point was to women, don't be fobbed off. It happened to me, Emma. I was fobbed off. don't be fobbed off it happened to me emma i was fobbed off don't be fobbed off i i believe that gps and those many women feel that a doctor is so much more qualified

so much more knowledgeable therefore he must be right and he knows what he's talking about and i must be i must be wrong being here and coming here all the time. I don't want women, I want women to be more confident when they walk in and not take no for an answer. And if you're still in pain, and if you're not being taken seriously, and if your GP isn't referring you on for consultant treatment, then ask for it, demand it, because it is your right to do so. And I think what happens when women go into a doctor's practice. That is patient shaming. It really is.

How on earth are you meant to know? I think it's patient empowering for women to go into a doctor's and know that they aren't there to be fobbed off, that they are there to be referred for services. How on earth are you meant to know that you've got a condition if you can't get a diagnosis and I'll tell you something else it is the least likely moment in your life when you're sat in a doctor's surgery in pain that you have the strength physically to do what you're talking about. So Emma not all conditions involve pain. No no but you mentioned pain. You mentioned pain. Yeah, I did.

All right, so I'm going to go with that. So if you go into a doctor's and you're perimenopausal and he's given you antidepressants and those antidepressants are making no difference whatsoever and he puts you on another course of antidepressants because he thinks it's not the right treatment or he refers you for a course of CBT and it makes no difference. Women feel, and I hear this from women all the time, they don't like to challenge because they feel

that the doctor must be doing the right thing. It's not always the case. Women can stand up and say, look, these antidepressants are making no difference. Could it be the menopause? Could it be something else? Because, you know, we all know doctors are very busy people and we're focusing on primary care settings.

They have so much time that they spend with each patient. They don't always see the patient, doesn't always see the same doctor every time. What I'm trying to do is empower women to have the confidence to go into a doctor's and challenge what the doctor is saying to them. And because that's I honestly believe that we need to take that responsibility to push back against what you described as sexism in the system to begin with. Well, I asked you a question about it. Sorry, if I may clarify, I asked you a question about it. I did not describe it as such. And you agreed with that description of the system.

Because you did also, in that same set of comments, compare endometriosis patients to the victims of Dr Ian Patterson, the breast cancer surgeon, who wounded and performed brutal surgery on his patients, was jailed for those actions, saying, we know women went back to Patterson, didn't challenge him on the treatment they were receiving, and I think women would be alive today if they did. Because in the case of Patterson, and I've recently, very recently, Emma, just this week spoken to two doctors, two female doctors who he operated on, who both went back for repeated surgery with him. And they are both GPs. Is that their fault?

And I asked them both, why didn't you kind of, if you're GPs and you're not, because he was, because he played the game. He was incredibly charming. But that just shows what you've just said doesn't make any sense. If you've got GPs. I think it does, Emma. Sorry, if I just could say this. I think it does.

And Paterson was a rogue practitioner. Yes. And so you're using the example of a rogue practitioner. I'm trying to give you the example of how rogue practitioners operate. I'm only using it because you used it. But let's talk about the greater number of women. No, no, so that's not how this works.

I'm so sorry. That's not how this works. You don't get to answer the questions you'd like to be asked. I'm mentioning him because you mentioned him and you're the Minister for Health with special responsibility for women. And on that point, a really big part of the women listening today who might want to give evidence after this is whether they trust you in that capacity

and you know trust is very important. And I wanted to ask you about something which is 13 years ago, you were front and centre of a political campaign to reduce the legal limit for abortions from 24 weeks to 20 weeks, despite that position not being supported by the British Medical Association. You are now Health Minister with this special responsibility for women. Why should women trust you with their health and reproductive choices when you've disagreed with the medical consensus so publicly? So a few parts and answers to that. First of all, the first part of the answer is I have no responsibility for reproductive health. That's an entirely different and actually sexual and

reproductive health and abortion is not part of this strategy. So that isn't anything to do with me. Do I still believe that the upper rate of abortion should be cut from 24 weeks to 20 weeks? Yes, I do. But I also believe in that in women's choice. And I also believe that there should be no requirement for two doctor's signatures. And there should be no requirement for anybody to have to have to have someone say so if they want to have an abortion in the earlier stages of pregnancy so i'm pro-choice but i at the upper limit because because a large number of those babies being aborted from 20 to 24 weeks or a number of them were female fetus at the time because if you remember at the time there was a

californ road clinic scandal and other stuff going on so so i do that still my position. But I have no responsibility in that area as a minister. And the Women's Health Strategy is not about abortion. It's not about sexual... But you know, my question, and it's very important that you had the chance to reply to that in full. Thank you for that. But my question actually was slightly different. My question was, there's no evidence

that the British Medical Association supports your position from 24 weeks to 20 weeks. You are in charge of a lot of other bits of health. And if you go against the consensus from the British Medical Association from 24 weeks to 20 weeks, even if you have the power to do, you don't have the power to make any changes. Why should women listening to this programme trust you with their health? Well, the BMA is a union, union Emma so let's be clear about that I've got only 35% of doctors are even members so I refute the holding me up against the BMA's opinion when there are many other opinions that were completely different. But it's not changed

the law though has it? It's one selective opinion to challenge my position there are many other opinions within the medical profession, including neonatal doctors who supported what I was doing. Because, Emma, there was an anomaly that we were aborting babies at 24 weeks in one room in a hospital and saving their lives in another. Can I ask you a question building on that point about trust, collecting people's health data from their GPs. A very quick question on this. Your department announced yesterday that the rollout is being delayed until the 1st of September after an outcry about this. How many opt-outs have you had? Are you able to tell us that publicly? No, I don't again, because that's not my portfolio. But what

I would say is that, you know, anybody who's been vaccinated, data saves lives and data is incredibly important. And we depend on debate. We depended on the data to run our incredibly successful vaccination programme. So you take this delay as what? Because some have said it's a sign of people's lack of trust that their data is not going to be sold off to the highest bidder through the NHS? I think it's a delay in terms of reviewing the processes that are in place. What that, again, it's not my area in health, so what happens as a result of that delay, I don't know what the objectives are, but I believe it's just to make sure that, you know,

that we can reassure people and that belt and braces and double belts and braces are applied. Nadine Dorries, thank you very much for answering that and we're going to come back to that issue later in the week on Women's Hour. If you'd like to give evidence to the first Women's Health Strategy, England's first one, the easiest way is to

complete the public survey on the government website as Nadine Dorries was just saying, more than 100,000 have completed it and we'll also put a link on it now on the Women's Hour website. the government website as Nadine Dorries was just saying more than 100,000 have completed it and we'll also put a link on it now on the Women's Hour website. Thank you there to the health minister. Now how did we get to the point where a specific women's health strategy is needed? None of the problems are new. Women for years, so many of you I should say are getting in touch and I'll come to those messages in just a moment, have talked about not being believed, having pain minimised, being

made to feel like what's happening is all in their head. But it'd be wrong to say that this dismissal and overlooking is the fault of doctors and science alone. Medical professionals are members of society like the rest of us. And the way society has historically viewed women has had a huge influence on the way women's bodies have been studied and treated. To put this into context, I'm joined by Dr. Eleanor Clegghorn, cultural historian and author of Unwell Women, a journey through medicine and myth in a man-made world. Can we start with where we are now? We just heard from the health minister with the prism of what you know about where we were, that the NHS system, as she just said, is sexist.

Hi, Emma. Thanks so much for having me. I would agree the NHS system is sexist. I think that the problem that we've inherited today and that we're trying to tackle today is a systemic one and it's a systemically sexist one. And it's the result of these ingrained sexist ideas about women's bodies, minds and lives that have really been entrenched into medical knowledge and medical culture since I I would say, the very beginnings of our modern Western evidence-based medicine. And why is that? Why has it always been the poor relation? I think women's health has always been the poor relation because historically medical knowledge and medical practice has been not only male-dominated in terms of men are the ones who get to practice medicine and also get to create the knowledge, but it's always reflected patriarchal ideas

about who women are and how they should live. And ideas about female biology in the past, so across the centuries of medicine's history, have been used to justify exploitative and oppressive ideas about women's lives. And the idea of what, that if you were saying you were in pain or something was going on with you, if I can put it as broadly as this back in the day, but you could be more specific, you were, as we've just been hearing, perhaps called hysterical, you were imagining it. There wasn't a way through that. No, I think that those ideas that when a woman says she's in pain, when a woman confesses to what is happening in her body,

that historically, back in the day, indeed, she was assumed to not be a reliable narrator of what was happening inside her body, in her organs, under her skin, because the presumed authority about women's bodies were men, were male physicians. And there's this idea, I think, throughout that resonates throughout medicine's history, that women, their organs, what's happening inside them, their reproductive organs, especially, are somehow annexed from their own control, like they have no sort of agency or autonomy over them. And men are the ones to decide what's really happening. So what we have with something like hysteria is a really profound connection between women's illness symptoms and their emotions. So hysteria was introduced in about the 17th century and it shape-shifted as

a diagnosis and really gained prominence in the 19th and it was often associated with multiple symptoms with pain with fevers with fainting and all sorts of fantasies and fictions about who women were and how they behaved when they were ill and what their illnesses were for in a social sense were projected onto that model of hysteria and a lot of what we're going to come to about autoimmune disorders certainly diseases and it mainly being women who have them. And women often having diseases where we just don't know enough about them. We don't know how to even couch them, describe them. And we certainly don't know how to cure

a lot of them as well, which in terms of the gap on research is huge. I know that we mentioned Dame Leslie Regan. She's the chair of the Women of Wellbeing Charity now, which looks into, tries to fund research. But we've got lots of gaps there, haven't we, to understand what's going on. Just to read you this email from heather which is not from back in the day it's from right now i have a lot of time for the nhs what i don't have a lot of time for

is being paraded from appointment to appointment to hear mainly men tell me i don't know my own mind just men she says sorry not mainly men when i want to be sterilized i'm 40 i've been trying to get sterilized for years are they just going to keep refusing until the menopause? You had your own experience of not getting a diagnosis. I did. I had an experience where I was diagnosed with lupus, which is a systemic autoimmune disease. 90% of sufferers across the globe are women. It's incurable. Medicine doesn't know exactly what causes it or why it's so prevalent in women. It's incurable. Medicine doesn't know exactly what causes it or why it's so prevalent in women. And I was diagnosed in 2010 after a complicated pregnancy and I developed a heart

condition. And the reason for this heart condition was that my immune system was attacking my own heart. So I was diagnosed fairly quickly after being admitted to hospital, but I'd experienced about seven or eight years of continual medical dismissal when I went to my GPs when I went to doctors when I was at university to try to get answers about this intermittent pain fevers migraines nausea and associated mental health issues that and every time I went I would be dismissed invariably as something like you're hormonal or a lifestyle thing you know you probably drink too much you need to lose some weight one doctor even said possibly you're pregnant and you don't

realize you are so there was always this sense that I what was happening inside my body wasn't valuable in terms of knowledge like my accounts of it weren't valuable that I wasn't to be believed and that my testimony wasn't worth you you know, putting me forward for any further diagnostic tests. What would you make of the minister's argument that you could have perhaps advocated stronger for yourself? I feel very strongly that the responsibility for changing medical culture should not be on women, especially women who've been through, you know, gaslighting and dismissal and distrust possibly for, before they can even have their symptoms considered as evidence of an underlying disease. So not one necessarily that you would be advocating and not one for your own personal experience. I'm also very minded to mention something we've covered a great deal and will continue to do so on the programme,

that the racism that can go on with believing women. And I know you've looked at that in particular, because as you say, those that we draw our medical professionals from are part of the society that they are in. Yes. I mean, we, in my book, In Unwell Women, I do discuss that the disparities that women experience around their health are widened. Things like the gender pain gap and the gender health gap widen for black asian ethnically diverse women who are not only you know battling against lack of knowledge about how complex chronic diseases especially affect the bodies of women of color differently but they're also facing and battling

against the obstacle that's in that doctor's surgery of entrenched and ingrained racial and gender prejudices, not just against the sort of validity of their pain, but against the existence of their pain at all. And in Unwell Women, I talk about some of the roots of this, these racist misbeliefs that black women felt less pain than white women, because they were perceived to be less and in very heavily inverted commas, civil. And these, you know, there's been research conducted in 2016 that shows that these racial prejudices are very much present in the attitudes of health professionals, not in a conscious way, but as implicit biases that as much ingrained in the medical knowledge as they are unconsciously expressed by individual health professionals. And in some of the outcomes we've seen around black maternal death and health risks, which again we have talked about

and will continue to do so. I think the other element of this, which is incredibly important to highlight, but I did just want to read this message from Neen who says, it took me a lot of courage after months of having joint pain and tiredness and being told by my male doctor, it was all in my mind to ask for a second opinion from a female doctor. Again, something you could say goes through what the minister was saying, perhaps having a different way of saying things or having asserting yourself. She persevered with tests and understanding and I finally got

diagnosed with rheumatoid arthritis, which will fit into our discussion about autoimmune diseases. Thank you Neen for that message. But the language of pain. How do men describe pain versus how women do in your research? In my research I discovered studies that show that men when they present in an emergency setting or to a doctor especially with chronic pain tend to be and not all men of, but they tend to be more stoical and more objective in their descriptions of their pain and how it's affecting them. And a similar study showed that women, when they express their pain, tend to express it in more social, emotional and psychological terms in relation to how that pain is affecting not only their lives, but the lives of people around them. And this study was conducted in 2001. It was called The Girl Who Cried Pain,

and it's a very, it's a pathbreaking study. Yeah, brilliant, brilliant name. It's a really pathbreaking study. And it really showed that these gender norms and expectations around femininity and masculinity, and the way those norms and expectations play into expressions of pain, verbal and non-verbal as well, really had a measurable effect on how women and men were treated differently when they reported pain. I just didn't know how to explain it. I've got better language now when I was going or trying to go. But I also thought, well, it's just, for instance, in my case, and I only say it because so many women are affected by both endometriosis and adenomyosis. I just thought, well, this is what happens. I'd also been taught that. So I thought,

well, I won't bother trying to describe it because it's obviously normal, but it's just a bit more. Yeah, I think there's this cultural historical tendency to normalise women's pain. And also the messaging that we receive culturally about women's pain is that we should bear it. You know, it's that we are built to suffer pain. We have had so many messages about hysteroscopies and the fact that it was already flagged actually by the campaigner Caroline Criado Perez this week on her social media feed about women not being routinely offered pain relief for painful treatments, i.e. hysteroscopies or IUD insertion.

She also posted a story from a woman who was given a local anaesthetic for egg collection during IVF, which wore off halfway through while her husband was given a general for sperm extraction. That feeds into what you're saying, I think. I mean, it's just startling, isn't it, that we are now in 2021 and there are still these sort of historical cultural stereotypes that invalidate women's pain, even at that level, even at that sort of evidence-based level. Having had a hysterectomy only on Monday, actually,

I can tell you, and not having any pain relief apart from paracetamol, it is extraordinary. Eye-watering and extraordinary. And I think it's important with this subject, as we're hearing from so many, because so many can relate to different elements of this and what

it means for them. Will women's gynaecological health and menopause be addressed? Will action be taken, reads this message here, to improve care for the results of the latest of the Women's Health Study and Survey, a question there for the government. And one here to read out Survey, a question there for the government. And one here to read out with regards to our interview with the health minister.

One here saying, as a female GP, I am listening to Nadine Dorries and I'm shouting at the radio. I can't believe she's blaming GPs, asserting it's a gender war of male GPs aggressively denying female patients the treatment they deserve of a sexist agenda. Quite apart from the fact that many GPs are female, this is sexist agenda quite apart from the fact that many GPs are female this is a neat cover-up for the fact that hospital waiting lists are getting longer and this is usually the barrier to seeing a specialist staggeringly she's also denying that

cuts to sexual health have had no impact on women's health shame on her reads that particular email that came in Dr Eleanor Clegghorn you're going to stay with us hopefully we could come back to you uh towards the end of the program author of of Unwell Women, A Journey Through Medicine and Myth in a Man-Made World. How are you today? I should have asked. I'm feeling good today. Good. Okay. Thank you. It's a great headline, Unwell Women.

I certainly relate and many, too, are getting in touch along those lines. Now, we did say we'll give you an update on life for those living with a vaginal mesh. And it's a story we've been following for years here on Women's Up. But to remind you, mesh was used since the late 90s on women as a supposedly quick and easy treatment for stress, urinary incontinence and pelvic prolapse. The mesh was placed into the abdomen to hold various organs in place, a bit like a hammock.

And for so many women, it did improve or cure their symptoms, but it was only later that other problems started to occur. In some cases, the mesh began to move, cut into other organs. It also caused extreme pain. Women's symptoms were dismissed for years. But in July last year, Baroness Julia Cumberledge, as the minister was mentioning, published a truly damning report into the avoidable harms caused by mesh and two other health scandals affecting women, sodium valproate and the pregnancy test primidos. Here's Baroness Cumberledge talking to Jane Garvey here on Women's Hour on the day of the report. I am deeply shocked. I think this whole thing has been a mega disaster.

And it's not just about looking at one rogue surgeon or a hospital that's fallen apart or whatever. This is about thousands of women in three different areas who have been ignored. And indeed, in one, sodium vulparate, which is taken by women who are epileptic and it controls that, it is still happening today. We've seen women who've had mesh inserted and we have heard the suffering in all three areas and this should not happen. It was avoidable and that is the thing we want to really put right for the future and some of our recommendations are about the future. And some of our recommendations are about the future, because the nation should not go through something like this again. Baroness Cumberledge, well, one of the recommendations from the report was to set up mesh specialist removal centres. And as of April this year, seven have opened across England with possibly two more scheduled to launch in the summer. To talk about

what that means in practice, I'm hoping to talk to Professor Hashim Hashim, Director of the Eurodynamics Unit in Bristol, who's been in surgery this morning as one of the UK's most experienced urological and mesh removal surgeons. And also Judy, a listener who emailed us about her experience of mesh and accessing those new centres. Judy, thank you for talking to us today. Good morning. Good morning, Emma. When and why did you have your mesh inserted? I had my mesh in 2009. I had no symptoms for the first seven or eight years. I was very, very lucky.

But one day I just couldn't bend down, which sounds utterly ridiculous. After, obviously, you're talking here, having had the mesh in, had it solved the issue it was designed to? Completely. Fantastic. I remember him saying, this is going to change your life. But I didn't realise quite how it was. And I'd like my old life back now, please. You say it was one day you couldn't bend down.

I know there's a very specific moment you can remember. Yes, I was tying my shoes or trying to tie my shoes. And I really, literally couldn't bend over, which is insane. Because the pain suddenly began? or what was the feeling I couldn't physically bend down but it was a ripping tearing sort of gnawing inside me it hurt I cried Judy hold that thought for a moment I think we've just got Professor Hashim Hashim on the line is he there at the moment I'm so sorry I heard a noise and I thought he'd just joined us he's coming out of surgery to talk to us. It's a very important story that you're telling. Many have been in touch with us over the years, but you were due to have your

mesh removed, weren't you? I was on the 6th of May this year and I was told 10 days before it would be cancelled and I had my treatment transferred to Newcastle. I'm so sorry how hard this is because your life, just to describe now, how is the pain? Just sitting here talking, I am in pain. Everything I do is pain. I can't sit. I can't stand. I have trouble driving.

I have trouble as a passenger i'm going to say no intimacy i was going to have to be helped in and out of the shower my husband helps me put shoes and socks on and to get dressed i really don't want to live like this it's not nice no of course you don't and you thought you were hopefully going to at least get some help that's right what happened oh i'm gonna say he rang me himself a very nice man who was due to my surgeon actually rang in person and he said unfortunately due to the opening of the mesh centers i'm no longer allowed to do this i so one of the solutions which is meant to to help has ended up with somebody not being allowed to help you yes that's right i said well what are you going to do he said well I'm not sure at the moment have you got have you got a new have you got a

new appointment at one of these centres we've got an appointment for late in July which is just for outpatients so I don't really know if I'm on the list or not at the moment maybe I can say quite often the lists are closed because there's so many people wanting the treatment. I may have to wait another two or three years. They thought it was important enough to do it immediately. I was on a priority list to have that stopped and diverted. I'm in limbo at the moment. I'm so sorry. I really am. And talking to us today, I was so struck when your email to us, your original email,

you said, I just don't even want to think about this anymore I don't want to even talk about this but you can't do anything else when you're living a life like this in such pain I imagine it's everything it affects the clothing I put on in the morning I now have gone back to having stress incontinence and urge incontinence so when you've got to go you've got to go so I have to have clothes that are very quick to take off at a moment's notice I have to think about that second cup of tea shall I shan't I I have to think about where the next toilet is just in case I have to have extra clothing in my handbag or about just in case I need it um pads and all sorts of horrid stuff that I really didn't think I'd need until I was 70 or 80 plus I'm living like an old lady and I really don't like it are you able to work

I am an event caterer so which means that where there's no been no events I'm not really hard to resurrect my business but it means standing for 10 or 12 or 15 or 18 hours a day depending on the event so I don't know how much longer I am going to be able to work. I did two or three little events, but I had a couple of days off in between because I was in absolute agony. I try very hard not to take painkillers unless it's an emergency, because I don't think that amount of chemicals in your body does you any good on a long-term basis. I use them, but I can say it really wasn't very nice and I didn't enjoy it at all. Judy, we really will try to get you some answers if we can. Certainly we'll try very hard before the programme, but if not after the programme

and to stay in touch with you here at Woman's Hour, because we do so appreciate you trusting us to tell your story. Thank you very much. I've heard fantastic things about Mr. Hashim, but unfortunately he's closed his list to everybody that doesn't live in Bristol, which is a shame. We even considered selling up and moving, which sounds ridiculous,

but I really am that desperate. Wow. That is a true sign of how desperate you must be to even think of moving, to be able to get onto somebody's list. He is extremely popular and I think that's why I can't quite speak to him at the moment. I think he's in the middle of trying to help a woman at the moment and we're hoping to get him on before the end of the programme. Judy, thank you very much for talking to us. I hope you can have

a bit of an easier morning or certainly feel like you're not alone in the company of the women getting in touch this morning and some of the issues that they're sharing as well. Thank you very much. There you go Judy one of our listeners. I was sent away says this message told there was nothing wrong with me by at least three male GPs. I remember leaving the surgery having been made to feel stupid. I then saw a female doctor she immediately took me seriously listened referred for an MRI scan and other tests. I was diagnosed with MS and at the time of my diagnosis the doctors thought I'd been living with it for at least 10 years. I know MS is a very difficult illness to diagnose but I shouldn't have been made to feel like a stupid

woman wasting male doctors time. Keep your messages coming in on 84844. They are invaluable. But let's talk about something that affects millions more women than men, but gets very little coverage, so few people know about in that sense. We are talking about autoimmune diseases. Four million people have an autoimmune disease in the UK. Three quarters of them are women. Or to put it another way, 8% of people have autoimmune diseases, 78% of them are women. Either way you listen to those figures it's jaw-dropping and currently none of the conditions which include Crohn's disease, MS as we've just heard about, rheumatoid arthritis, we already had a message on that, none of them have a cure. Could a completely new approach looking at autoimmune diseases finally help shift the dial? Let's cross to our reporter now,

Carolyn Atkinson in a radio car outside the Royal Free with someone who should be able to shed some light, Professor Lucy Walker. But before you go to her, Carolyn, let's start with what an autoimmune disease is. Well, it's when your immune system, which should protect you from infection, actually turns and attacks your own body. Now, it's very common and the number of cases are on the rise. And there are some astonishing facts about these diseases. Some fairly well known, like you've mentioned, rheumatoid arthritis, type 1 diabetes, MS, Crohn's disease, but there are more than 80 different autoimmune diseases. And some of them are very rare indeed. So of course, as we've been hearing, getting a diagnosis is even harder. And as you said, women are much more likely to get an autoimmune disease, three times more likely,

in fact. And even more alarmingly, if you've got one condition, then you're much more likely to get an autoimmune disease, three times more likely in fact. And even more alarmingly, if you've got one condition, then you're much more likely to have another or more than one, sometimes two or three, or even four or five. So scientists do know that there are underlying similarities between autoimmune diseases. And this is where this new approach to research is going to fit in. Because despite connections between the diseases there haven't been connections between researchers until now so the the british society of immunology has joined up with some of the leading charities the juvenile diabetes research foundation versus arthritis and the ms society for this breakthrough project and that is definitely how it's being seen so

i am joined now by nina christ, who has three different autoimmune conditions, and also, as you said, one of the country's leading immunology experts, Professor Lucy Walker, who is the Chair of Immune Regulation at UCL University College London. We're right outside your brand-new lab, which has just been built behind us. Professor Walker, dozens of conditions there, millions of people affected, having massive impacts on their daily lives. How big a challenge is this, do you think? That's right. I think this is an enormous problem. We know that some of these autoimmune

diseases are quite common. So about one in 100 people in the UK has rheumatoid arthritis. For type 1 diabetes, it's about 1 in 300, for MS about 1 in 500. So most people will know somebody with one of these conditions but actually as you mentioned there are many many other rarer conditions and when you add them all together it really is a significant health burden. So 1 in 16 people being affected. And at the moment it's mainly focusing on treating the symptoms rather than anything else and anything more dramatic. That's right. We're very focused on the differences between the different diseases, the symptom end rather than the commonalities. But from the outside these conditions would appear, from the layman's point of view, to be very, very different and present differently. There doesn't seem to be much similarity between alopecia, for example, and MS.

So what are the common threads in autoimmune diseases? Well, that's right. We think that the common threads really relate to how these diseases initially develop. So although, as you say, somebody with rheumatoid arthritis has very different symptoms to somebody with multiple sclerosis. Actually, the initial process of immune tolerance failing, so your immune system failing to tolerate your own body and instead starting to attack it, this process is common to all the autoimmune diseases.

But as we know, many, many more women are affected. What do we think the reason for that is? Well, that's right. It's a very striking sex bias, and it varies a little bit between the different conditions. So for multiple sclerosis and rheumatoid arthritis, for example, they're two to three times more common in women. Lupus is over six times more common in women.

And we don't understand fully why this is. We know that women have quite different immune systems to men. Women tend to make more vigorous immune responses. So when you get an infection, women will respond a little bit better. Women also respond a little bit better to vaccination but this also means on the flip side women are a bit more likely to make a stronger response to their own body tissue and women often say it happens at times like puberty or menopause or when they're pregnant so something's going on with the hormones yes that's right so there is an impact of hormones we know that many different immune cell types have receptors for sex hormones, for oestrogens and androgens,

and that hormonal changes can alter the immune response. So in pregnancy, for example, many autoimmune diseases actually remit. During that process. Well, Professor Walker, stay with us if you would. Nina Christie, you've been diagnosed with three autoimmune conditions so multiple sclerosis ulcerative colitis and psoriasis let's wind back seven years to 2014 you were 22 years old what started happening yeah so basically i presented some symptoms which at the time was my first ms relapse and they presented as in my

left arm went completely numb actually dead it was hard to lift it above my head I started getting something called an MS hug which at the time obviously didn't know was an MS hug but it was an excruciating pain across my chest I was admitted to hospital because I was so concerned about the pain and the numbness of my arm and I was kind of dismissed for it being muscular and kind of sent my way with painkillers even though you know my dad does have autoimmune diseases that wasn't kind of sent it my way with painkillers. Even though, you know, my dad does have autoimmune diseases, that wasn't kind of discussed at the time. The fact that my arm had gone completely numb wasn't really a concern to them. And I was just missed at the time as something being muscular.

And you just thought it wasn't normal, but you were being told it was just one of those things. Let's spin forward five years. What happened then? So then I had another MS relapse again. So obviously with the way, the nature of MS, how it works, you go into relapse and remission. So I recovered with the arm. I thought nothing of it. My doctor said it was muscular.

So I kind of went on as though it was muscular. And then five years later, I had another MS relapse, which again, I lost my left leg. So that caused toe scuffing, that caused foot drop. I was falling over and actually then I actually was saw a woman and she then started my diagnosis for MS which was five years later. So finally you got started getting some medications and then in the very week when you started getting medication for your MS what happened then? Yeah the week I started my MS treatment I also

started a new job and I went into my first ulcerative colitis flare. Now, this flare went on for about four months and I was being dismissed by doctors about three or four times for it being IBS. I know the symptoms can be very similar between IBS and IBD, but I was presenting some very strong ulcerative colitis symptoms and there was no discussion about the fact that I already had MS at the time, which was also an autoimmune disease. And massively impacting your day-to-day life,

running to the loo all the time. Yeah I was going to the toilet about 40 times a day by the end of it and that's when it really, I got admitted to hospital because I was so unwell I'd lost about two stone and that's when I was taken a little bit more seriously but that was after a lot of pushing with the doctor. So we heard the Minister Nadine Doris saying don't be fobbed off, we heard Dr Clegghorn saying she felt she was dismissed that's clearly what you were feeling and during your whole process of getting getting the diagnosis then you got the third whammy if you like didn't you the third one? Yeah so I'd always had problems with my scalp again it's something I'd been going to the doctors about for years again being dismissed as kind of dry scalp using different

shampoos and when I started understanding that my body was in a bit of an immune response and I was getting autoimmune diseases, I pushed again to go and see a specialist about my scalp, which then I was diagnosed with psoriasis as well. Okay, so Nina, thank you so much for sharing that with us. Professor Walker from UCL. Now, clearly the experiences of Nina are completely life-changing. They're incredibly distressing.

So this new approach to research, how is it going to work? Well, this is a very exciting new initiative. It's called Connect Immune Research, and it was launched in 2018 by these three medical research charities, JDRF, the Type 1 Diabetes Charity, Versus Arththritis and the Multiple Sclerosis Society and together with the British Society for Immunology. The idea really is to bring together specialists that work in different disease areas and actually catalyse a joint working approach so we know autoimmune diseases are connected so it makes, rather than studying each one in isolation, instead to study autoimmunity more broadly across a whole range of conditions.

And Nina, what do you make of that? Because you sort of had each condition in a silo, didn't you? Nobody seemed to be joining the dots. Yeah, I think a blended approach is really what would be needed in research, because it's something that I found really interesting that none of my specialists actually speak to each other, even though they're all autoimmune specialists and obviously within their own right and a lot of the time when I did some social media advocating and some awareness online a lot of women I actually realized there's a lot of women out

there that have multiple autoimmune diseases not just the one and again they had also had experiences of being dismissed over time with symptoms so yeah I think a blended approach would be a really interesting way to go. And Professor Walker, at the moment, would you think it's fair to say that everyone's been sort of gazing at their own expertise, but they haven't been looking further afield? Do you see this as being something that really could make some progress? I think so. I think this is going to be game changing, because really, as you say, people have been focused very much on the disease-specific differences. And we've perhaps been missing a trick about the commonality, the common themes underpinning all of these different autoimmune diseases. areas we're going to be able to make research progress much faster and develop new diagnostics

and new therapies that hopefully will be able to be applicable across different groups of conditions well ending on ending carolyn i'm so sorry but ending on an optimistic note if we can carolyn atkinson in our radio car they're interviewing professor lucy walker thank you so much for that butting in because i did promise you a chance to hear from Professor Hashim Hashim, the director of Eurodynamics, the unit in Bristol, and one of the UK's most experienced urological and mesh removal surgeons. In light of what we were just hearing from Judy, a listener who emailed us about her experience of mesh. Hashim, I'm told you are free to talk to us, having been very busy this morning.

Yes, hi, good morning. Sorry, I was between cases and operating. Please don't apologise. You're helping people with your work. And you're in huge demand, which I think speaks volumes about how difficult this is. It is, in fact, yeah. I mean, there is lots of cases to be done. And as we all know, COVID didn't really help with waiting lists so there is a lot of mesh removals happening there's a lot of other operations happening on the benign pelvic floor side. And what is it like to try and get this mesh out? It's a very difficult operation the mesh is usually stuck to the surrounding tissue in scar tissue.

And it gets even more difficult if it's stuck to the urinary tract. So if it's stuck to the urethra, which is the water pipe that drains the bladder, or if it's stuck to the within the muscles, it's sometimes very difficult to find. It has to be very delicate surgery that we have to apply sort of principles of, you know, surgical principles to. Can you understand, therefore, why women would be very nervous having just gone through something where they trusted that a procedure would have helped them and now it's left them in a very, very difficult place? And it was so emotional listening to what Judy had to say that they would then be nervous about this complicated surgery. It is and I think you know we know that you know there are centres that have been established now the surgeons in those centres are all experienced surgeons who deal with even more complex work in the pelvis. And therefore, they will be capable of removing these meshes.

So you have faith in these new specialist centres opening, I suppose, because from Judy's point of view, and I know she's only one story, but she had her case, she had her appointment cancelled because it had to go into one of these centres she doesn't live close to one of them I mean she even talked about moving to where you are to try and get on your list which is how you know desperate people are yeah I think I as far as I know in the centres that have been established now they're you know publicly it's on public on theAS website, the British Association of Urological Surgeons, where these centers are. The surgeons in those mesh centers, as I said, are all experienced surgeons.

Some of the centers have already published their outcomes and their data. So, you know, it's all in public domain in mesh removal. But, you know, these, these, the surgeons that are currently in those mesh centres are performing even more complex surgery, such as, you know, the site, you know, fistula, which is a hole between the bladder and the vagina, or a urethra in the vagina, they are performing bladder removals, bladder reconstruction, which is regarded even more complex than mesh removal. Can you get all of the mesh out? Yes. So when we're talking about mesh, so what we're talking about is the incontinence meshes. So these are the retropubics are the ones that go in front of the bladder.

And then there are ones that go in the groin. And then there's also the vaginal meshes, which are inserted for prolapse. And it is much easier to get them all out if they haven't had a previous attempt at removal. And so this is my in my opinion and my experience is that it's always easier to get the mesh all out. And yes, it's not a problem getting it all out as long as you know what you're looking for and manage and apply surgical principles to it. Do you find it's hard to get some women to trust you before the procedure, even with your reputation? It is very difficult, yes. But I think the main, you know, my approach is to be transparent.

You know, we've just, we're going to present our data at the British Association of Urological Surgeons meeting. So, you know, transparent about our data, transparent about our outcomes, and the reviews of all the women who've had the mesh with us have been very positive. I mean, as a snapshot, about over 90% of the women that had the trans-obturator tapes removed are would recommend the procedure to a friend and over 90 percent are satisfied that the mesh is completely out. Well thank you for coming to talk to us how many surgeries have you got today? Well we've got one major one which will take about six to eight hours and then three or four on the other list. So I'm running two lists today. Well, it's very, very good of you to talk to us. Professor Hashim Hashim there in between his surgeries,

talking about the removal of vaginal mesh. So many messages, people saying, talking about ulcerative colitis, people talking about how difficult it is to get diagnosed for autoimmune liver disease. A woman here has just texted in to say, my daughter suffered from this for at least five years. Also saying, you know, please, can you mention about thyroid and what goes on with that? That's a huge issue for women. I cannot tell you the breadth and depth of your messages.

Thank you so much. We'll be back with you tomorrow at 10 o'clock. That's all for today's Woman's Hour. Thank you so much for your time. Join us again for the next one. Welcome to Descendants, the series which looks into our lives and our past and asks something pretty simple how close are each of our lives to the

legacy of britain's role in slavery and who does that mean our lives are linked to narrated by me yersa daily ward we hear from those who have found themselves connected to each other through this history. Whoever you are, wherever you are in Britain, the chances are this touches your life somewhere, somehow. Descendants from BBC Radio 4. Listen now on BBC Sounds. And the deeper I dig, the more questions I unearth. How long has she been doing this? What does she have to gain from this? From CBC and the BBC World Service, The Con, Caitlin's Baby. It's a long story, settle in. Available now.