Woman's Hour - Jules Montague on diagnosis, Abortion in the US, A scratch and sniff T-shirt, Disabled children in Ukraine

Episode Date: May 11, 2022

In former consultant neurologist Jules Montague's new book, The Imaginary Patient, she looks at how they can be influenced by many external factors. Who gets to choose which conditions are "real" or not, and is that a helpful question to ask? And what implications does that have for women? She joins Emma. Michael Gove, The Levelling Up Secretary, confirmed that there will be no emergency budget to help with the cost of living, even though the Queens Speech yesterday said that the Government would help. New research says that an estimated 1 and a half million households in the UK will struggle to pay food and energy bills over the next year. Sarah Pennells is a Consumer Finance Specialist at the Pensions Provider Royal London and has been gathering data on this. How are disabled children being affected by the war in Ukraine? There are claims that thousands have been forgotten and abandoned in institutions unable to look after them. The human rights organisation, Disability Rights International, has carried out an investigation. Their Ukraine Office Director, Halyna Kurylo joins Emma. It’s been just over a week since the the publication of a leaked draft document from the Supreme Court, which suggests Justices are set to overturn the landmark Roe v Wade, ruling, which gave women in American an absolute right to an abortion. To discuss what this means for women in America Emma is joined by Associate Professor Emma Long and State Senate candidate Leslie Danks Burke.There'll be no emergency budget to help with the cost of living, even though the Queens Speech yesterday said that the Government would help. That's been confirmed by Michael Gove, The Levelling Up Secretary, this morning.We've been celebrating the emotional power of old clothes in our series Threads. Zoe, who was known as 'strawberry girl' on her small university campus in Liverpool tells us about her 'scratch-and-sniff' t-shirt.

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. Good morning and welcome to the programme. Far from Wagatha Christie, the High Court libel battle between Rebecca Vardy and Colleen Rooney over who said what to whom, which could cost £3 million, there is a cost of living crisis. And the question of how this government is going to respond to it. Representing the government this morning on the interviews round was levelling up Secretary Michael Gove, who has ruled out an emergency budget, after criticism of there not being enough to help those struggling in yesterday's Queen's speech.

We know women are typically paid less than men and according to the Living Wage Foundation campaign, almost 60% of all jobs paid below the living wage are held by women. There is also a difference between how much women are reporting their levels of worry about rising prices versus men. For instance, a recent study from Royal London, a pensions provider, found 40% of women are very or extremely worried about the rising cost of food compared to 26% of men. What Mr Gove did say this morning was that the government will be saying more

and doing more to help people. So what should or could that be from your perspective, from your view, and tell me what you're thinking about this at this moment. I want to try and capture a sense of what you think the government's response could be or should be. 84844, that's the number you need to text me here at Women's Hour. Text will be charged at your standard message rate. I imagine you've been thinking about this even if you are not directly affected, although everybody

of course will be subject to price increases and some of the issues that we are discussing, we'll continue to discuss across all of our programmes here at the BBC. But if you've got a view on how you think the response should be, I would very much want to hear from you this morning, as Mr Gove has said, the government will be saying more and doing more. What should that, what could that look like? But it won't be an emergency budget, we're told. On social media, we're at BBC Women's Hour.

Do get in touch or feel free to get in touch on there if that's your preferred choice of platform. Also on today's programme, why medical diagnoses are not always what you think they are. The latest state of play with regards to abortion laws in America. We'll bring you that more than a week on from that unprecedented Supreme Court leak. And a very special scratch and sniff T-shirt.

All to come. All life is here on this programme. I always say it and we mean it. But there will be no emergency budget to help with the cost of living crisis, even though the Queen's speech, that Queen's speech yesterday, in there, the government said it would help.

That has been confirmed by Mr Gove. The confirmation this morning comes as new research says that an estimated one and a half million households in the UK will struggle to pay food and energy bills over the next year. Rising prices and higher taxes will squeeze budgets. And that's according to the National Institute of Economic and Social Research Research also predicting that the country will fall into a recession this year. Well Sarah Pennells is a consumer finance specialist at the pension provider Royal London. I mentioned some of their research just a moment ago and has been gathering data on this. Good morning Sarah. Good morning. I mentioned about the the differences between how women and men are reporting concern and those issues to do with the rising costs of living. What have you got on that, first of all? Yeah, I think this is really

interesting because we had some sort of headline figures around people being worried about the cost of living and the changes they were going to make. And what we found was that people across different income bands were often quite consistent, which was a bit of a surprise. But there was often a big difference when you looked at gender. So I think it really broke down into three areas. So one was around how worried people were about rising costs, but then also around the steps they were going to take and whether they were going to take on certain types of debt. So to give you a few examples, we asked about food, energy bills, fuel, those kind of things. So whereas we found 17% of men said they were not worried about the rise of the cost of food shopping, only 8% of women, so sort of half as many women. At the

other end of the spectrum, if you asked who was very worried, it was 16% of men said they were very worried, one in five, 21% of women. And that was quite consistent. We looked at the rising cost of fuel. There was a sort of a doubling of the number of women who were worried compared to men. Cost of energy bills, again, a significant difference. And this isn't to say, you know, our women are worrying too much. It's just there's a difference in how I think women are looking at these costs and looking at the impact on the money that's coming into the household and actually how they're going to try and mitigate that. Because although there have been great strides in equality in many areas, it's still

often the case that, you know, in the household, women are in charge of the short-term budgets and to a lesser extent these days, but men tend to be more likely to be in charge of the longer term, you know, the long-term savings and pensions. So it's women who are more likely to make those day by day decisions of what food they buy, paying those bills, energy, fuel, and so on. And I said that was a really consistent pattern, both in terms of, you know, those who said they weren't worried, and the percentage of men and women who said they were very or extremely worried by what's going on in terms of the cost of living rise and does that is there a difference in you mentioned there about how not not just necessarily the short term um what food's being bought what decisions being made energy providers but the longer term the decision to take on

certain debts and those sorts of decisions between men and women is there a difference there yeah so we saw difference in two key areas. So as you mentioned, the short term decisions. So, you know, we, although we found, for example, two thirds of people overall said they were going to make changes in how they went food shopping, we found that there's about a 15% difference between men and women. So say 40% of men said they'd switch to cheaper brands, 55% of women, sort of 40% of men said they would have fewer takeaways, about 54% of women. It was a really consistent picture. And then we did ask about things like savings, pensions, and specifically debt. Are you thinking of taking

on a credit card, overdraft, bank loan, payday loan? Now, again, overall, the figure was about one in five people said they were thinking of borrowing. And actually, there wasn't a massive gender difference here. But where we did see a key gender difference was the kind of debt that people were going to take on. So, men and women were fairly consistent about going into an overdraft or putting everyday spending on their credit cards. But there were two big differences. One was the number of people who said they would be thinking about taking on a bank loan. So it was only a minority who said they'd take on a bank loan. It was 6% of men, but only 3% of women.

And the final big gender difference was when we asked about short-term payday loans. And here, again, only a very small minority, but 5% of men said they would think about or were considering taking on a payday loan to pay for everyday expenses. Only 2% of women, so one in 50 women compared to sort of one in 20 men. That is quite sizable, even though the figures themselves are small. It's a really sizable difference. And I think it does tell us something interesting about how women feel about debt and also their response to this cost of living. Well, I was going to say squeeze. It's not a squeeze. It is a crisis. Yeah, I mean, I'm just looking at a message that's just come in from Amanda who says, I cried when I put electric in my meter.

It has doubled week on week. Food prices have gone up. I work part time. My daughter receives disability living allowance because of her son's health disability I'm not entitled to any help as my housing association flat is in band e but Amanda they're getting in touch with what it's what it's like for her right now what I've also asked our listeners and it would be good to get your take on this Sarah Pennells is what what could or should the government do? Because away almost from the politics of it, although, of course, politics is key and it's intrinsic to it, there are concerns about not enough being done now and, you know, not being able to wait for a budget or another fiscal intervention.

What is your take on this? Yeah, I think as time has gone on, I mean, we've seen that people are getting, in a way, we've got a little bit of a lull on some sense in that, you know, the weather is better, people are using less energy. Although, ironically, if you want to pay the least for your energy, you know, the most cost-effective way is to pay for it monthly. So, there you don't see any difference. But we are already seeing people getting very concerned about the rise in October. And we're going to find out about that energy price cap rise, probably the end of the first week of August, which is not that far away. So the clock is really ticking. And as you say,

every decision that a government makes is political. It has to make political choices about spending. But there have been a range of suggestions that a number of think tanks have made, for example, that so far haven't been enacted. So while the government has announced recently or confirmed that it's going to make changes to the warm home discount scheme, there are some people who will still miss out on that. There's probably some more work to do around targeting to make sure it really does reach everybody that could really benefit from it. The other thing is, and this has been very widely reported, but we know that benefits are going up by, well, have gone up by 3.1%. Latest inflation figures were 7%. And we've got figures coming out next month, which are going

to be higher. So, we know that people who are on benefits are already, you know, losing out in terms of their income. And although the cost of living crisis is affecting everybody, people on the lowest income spend a much higher percentage of their income on the basics, on the energy, on the food, on sort of fuel for their car if they have one. So I do think that the government is probably going to come under a lot more pressure between now and certainly October or August when we get that energy price cap confirmation to put some more targeted health in place. I mean, there is one thing that maybe they could look at doing, which isn't necessarily about spending more money, but making sure that the benefits that are currently available are

claimed. So I don't want to throw around a whole load of figures, but a couple of key ones. Pension credit is a benefit for people of state pension age. And at the moment, £1.8 billion of that goes unclaimed. And that benefit is what's called a passport or gateway benefit. So if you get pension credit, then you get the warm home discount, you get money off your council tax bill. So that can make a massive difference to someone's income. Now, one of the reasons why it's not claimed is the forms to fill it in are quite long and complicated and people don't think that it's actually worth it. So I think there is definitely work that the government could do, not just around benefits for state pension age people, because we know that working age benefits are also unclaimed. We just don't have quite such good data on that. But that would in a way be a, well, not a short term win, but it would be a win that could make real difference to

people's incomes on an ongoing basis. I mean, also, just with what you were first saying in response to that question, a message came in saying, why can't it be simple and just put a cap on energy bills and the government sort it out with the gas and the electric companies? That way we can all share the burden. What would you say to that, Sarah? Well, we do have a cap on the energy price. I mean, we don't have a cap on the ultimate amount you pay because obviously that depends on what you use. One of the problems, though, is because the wholesale prices have been rising, you know, the cap has had to rise. We've already seen, I think it's about 20 energy suppliers go bust. And actually, it's us as energy bill payers who

end up paying the costs of those companies going bust. I mean, I think it is in terms of energy bills, it's actually going to have to be sort of several measures that come in. The energy price cap, the government actually just confirmed yesterday that the energy price cap, which is due to run out this year, is going to be extended for another year, so to next April. So, what I do hope, you know, is that when the energy price cap is reviewed in August to kick in from the 1st of October, that we don't see those rises that are currently being talked about of possibly another £900 on top of what we're currently paying, which people, as you've been hearing, I certainly have been hearing, are already making incredibly tough choices, too frightened to put their heating on, too frightened to use the oven, all those kind of things, never mind when the winter comes around again in October.

And as you have been finding out with some of your data and research, which is borne out elsewhere, the differences between, of course, men and women and who's taking those decisions, I suppose, and the worry that accompanies them, of course, across the board. But it's interesting to hear the differentials between men and women on that. Sarah Pennells, thank you very much. Consumer finance specialist at the pensions provider, Royal London. Keep your messages coming in with regards to what you think the government should or could do, as it's been confirmed this morning that the officials will be getting together, they will be saying more, they'll be doing more to help people, but no emergency budget. 84844, that's the number you

need to text me here at woman's hour but sticking with politics but let's cross the pond now to america to catch up on what's happened just over a week on since that unprecedented supreme court leak which suggested that women across the us could soon lose their legal right to abortion the document you'll remember published by politico in full, the website, the political website, suggested the country's top court is poised to overturn that 1973 decision which legalised abortion nationwide, Roe v Wade. Chief Justice Roberts confirmed that the leak was authentic, but is not reflective of the court's final position. He also added that the

leak will not affect the court's work going forward. A decision is expected in late June or early July. I will be talking to somebody on the ground in the US who's been campaigning with regards to this very shortly. But first, let me speak to Emma Long, an Associate Professor of American History and Politics at the University of East Anglia. Emma, good morning. Good morning. What is the latest on this in terms of the feeling about whether this is going to go ahead or not, the likelihood of this ruling? Most people seem to think that this will be the final result. I mean, Chief Justice Roberts, as you mentioned, in his statement said it's not reflective of the final ruling, but it's extremely rare on the court that the draft opinion changes the result and the final outcome in the case. You

know, the wording might change, paragraphs might come in and come out, the grounds for the argument may change slightly, but it's very, very rare that the baseline final ruling is what will change. So generally speaking, the sense is that the rose days are numbered. And in the week since this leak, which is unprecedented to get this sort of insight into the Supreme Court rulings or the thinking, surely, behind these sorts of things. What's been happening across certain states almost to get ready for this? I mean, some states were already prepared for the possibility of this. I mean, 13 states had these so-called trigger laws on the books, which are laws which once this opinion comes down, if it comes down as expected,

will automatically ban abortion in their states or heavily restrict it. And some of those states have had those trigger laws in place for more than a decade. Some are more recent. Other states have been moving to try and pass laws that would impose further restrictions on women's access to abortion than already exist. On the other side of this, you have pro-choice campaigners in many cities across the US out on the streets protesting. There were protests outside the US Supreme Court. I noticed yesterday they've now put gates up outside the Supreme Court so people can't get close to the building. And people have

been protesting outside the justices' houses. So on Saturday, for example, there was a protest that started at Justice Kavanaugh's house and walked the mile or so to Justice Roberts' house. They live just outside of Washington. You're talking there, of course, about two of the Republican appointed justices, especially people may remember Justice Kavanaugh's name, of course, appointed by Trump and some controversy about that at the time. But yes, you're right to mention those protests happening. And also an anti-abortion centre apparently was firebombed on Sunday as well.

Yes, that seems to be the reports and a couple of reports of other clinics along those lines being spray painted with pro-choice messages as well. Although we should probably point out that there's a long history of abortion clinics being targeted in the same way as well. Yes. And security, just though, because, of course, we're talking about the last week, but that is a bigger point to make. Security now being stepped up for those judges. The White House has said demonstrations should never include violence, threats or vandalism. And public opinion across America, because it's slightly different when you look at each of the states and where people are within those states. What does polling say at the moment with where the majority of Americans are on not having this legal right to abortion overturned? General polling seems to suggest about 60% of Americans support some access to abortion rights.

And about 37% of Americans say that there should be no access whatsoever. But it's slightly misleading. If you look deeper into the figures, that's driven by 80% of Democrats supporting access to abortion and only 38% of Republicans. So there is a deep partisan divide there, which is shown up when you look at these states, so that the states that have trigger bans that would come in if Roe is struck down. If you look at public opinion in those states, a slight majority of people in those states in polling suggest that they support making abortion illegal. So it's the difference between the national level and the state level. Which is, if this goes ahead, what we will see with the way that the law is then applied and carried out.

I suppose the other question of this to understand is the mood amongst the so-called pro-life campaigners at the moment. Is there a feeling there or a sense you're getting that they have won an argument they've been trying to win for years and years? Yes, I mean, you have to remember, I mean, this has been a campaign by pro-life conservatives for more than 40 years. You know, this isn't something that's just suddenly emerged. So yes, there does seem to be a sense that this is, you know, this isn't something that's just suddenly emerged. So yes, there does seem to be a sense that this is, you know, they're on the precipice of something that they've campaigned for. But it's probably also worth mentioning that in many of these states that are restricting

access to abortion even further than they had been up to this point, we're seeing even tougher laws being imposed. So some states are discussing things like what are called fetal heartbeat bills or laws which will define life as beginning at conception, which would make it extremely difficult, say, for somebody who has an ectopic pregnancy, whether the fertilized egg is implanted in the fallopian tube and not the womb, would make it, these kinds of life at conception bills, would make it almost impossible for those women to gain access to abortion, even though that situation would risk their life.

So campaigners aren't just stopping with the possibility that the Supreme Court may well hand down this decision as we expect it to, but they're pushing even further to try and put even greater restrictions on access. Well, with the tide having seemingly turned, as you've just heard some of the detail there, against abortion as a legal right, who is fighting this? Well, one of the women is Leslie Danks-Burke, one of the leaders of the abortion rights movement in New York and professor of Cornell Law School. She's also standing for New York State Senate as a Democratic candidate. Good morning. Welcome to the programme. Good morning. Where are you with accepting that this could be the reality? Not being happy about it, I'm sure of that, but where are you with thinking that this will be the reality

come the summer in America? Well, it's an absolute gut punch. You know it's coming, you see it coming, but it still just socks you in the gut and you get the wind knocked out of you, right? But then you stand right back up and you keep fighting. And that's what we've been doing in New York. And that's what we've been doing across the country for the last 30 years,

because obviously this has been a target for decades. And we've been standing up loudly over the years to try to circumvent this. And I know you were very involved in abortion rights in New York. You actually got the law changed there. We did. So Professor Long was talking about trigger laws in some states that will go into place to eliminate access to abortion as soon as this decision comes down.

What we did in New York was go the other direction and put a protection into place in New York statute so that if federal law changes, if Roe versus Wade are returned, which it certainly appears will happen within weeks, New York women and people who want to access reproductive health care are protected. Because, of course, we're just mentioning some of the laws going further as well within those states. And there has also been the suggestion that there could be the limit of contraception in some of those states as well. Exactly. And Professor Long talked about the laws that could target abortion at conception. We also see tremendous targeting of birth control. The ability not to get pregnant in the first place is being attacked by conservatives because there are these differences of the numbers who agree with what should be available. What do you say to that?

Well, access to abortion is a basic human right. And so we should have that access across the country. Unfortunately, there are some states that simply don't recognize that. And that's why we had the right to privacy at the federal level. That's why we had abortion rights at the federal level was to overcome those states that chose not to recognise basic human rights. And so what we're going to have to do is get back to that. Forgive me for interrupting, but what I was going to say was, it's not the states necessarily, it will be the majority of those people, some would argue, that the people in that state want this.

What would you say to that? They're wrong, unfortunately. There are times in human history when a substantial portion of the population believes in disenfranchising another portion of the population. And it's simply wrong. But with this, you say it's like a gut punch. It's a very visceral way for people to access how you're feeling about this. You know, people can feel like this is certainly on your side of things around the world for American women right now. If they've also been made perhaps fighting for it wherever they live or been looking at this.

But I mean, can you can you kind of can you believe that this is happening? Have you managed to get your head around that reality and how then it will affect women who do need access to these services? You're absolutely right. The people that it's going to affect most are the people who have the least. And, you know, anecdotally, if you've ever seen the movie Dirty Dancing, for example, where a baby is able to go to her rich father and get the money for an abortion, although the other woman in the movie does not have a rich father and she does not have access to that and she is left bleeding and butchered on a table. who have more are going to be able to access abortion. They're going to be able to travel across state lines to states like New York that will put themselves forward as safe havens, and people without resources will be left. Well, we've also seen that certain companies have said that they will pay for employees to be able to travel, make those journeys, but then other states have said, we will legislate against that. There are fights coming that perhaps could never

have been foreseen in quite this way. And now if you have kind of corporate America going up against certain parts of political America. Exactly. And we have seen that play out in other contexts. You see that play out in tax policy, for example, all the time that corporations and the government disagree. And I think that corporations understand that you simply cannot disenfranchise an entire section of the population. There's no way that abortion is going to be minimized. Abortion continues, even when it's illegal.

What changes is the number of people who die from it. And corporations tend to be profit-driven and they're not interested in seeing people die. How do you feel the immediate future will look in America come the summer if this is the case? We should still keep saying this hasn't been ruled yet, but this is expected in June or July. I think that you're going to see a tremendous outpouring of outrage. It's already starting here. I was a part of protests immediately the day after in my hometown in far upstate New York. I live in a part of New York that is about four hours away from New York City by driving. And it's a very rural area. It's actually a very conservative area. Donald Trump carried the area that I live in by substantial margins both times that he ran.

And even here, there is just tremendous anger and outrage about this decision. And so you're going to see that. Amongst Republicans, you're saying as well? Well, you know, you go to a protest and you don't know who, what affiliation people are. I was trying to get a sense. Because in the UK, we hear about it as a very partisan, a politically partisan issue. Of course, it's not going to be that clean cut, you know, depending on where you live, who you are, your background. So it's just interesting to hear you paint that picture of where you live. Well, I think it might be that the people who care passionately about this are

willing to take to the streets. So that 37% of people that Professor Long pointed out who are opposed to abortion, you know, they're obviously not joining abortion rights rallies, but the 63% who comprise Republicans and Democrats, they're pouring into the streets. Well, on your side of things, if I could put it like that, that's sort of what's happening. And They're pouring from the beginning. But this is still not the ruling. We will, of course, follow this story. Perhaps we'll catch up again with you. And thank you very much for talking to us today, Lesley Danks-Burke there. And also before that, I was speaking to Professor Emma Long. You've been getting in touch while we've been talking back to the politics and the costs and the economics of this country, with some of your suggestions as to what you would like to see this government do.

And we've got messages coming in around all sorts of areas of life and finance. Pearl, who's listening this morning, good morning. Increase the savings limit and the income limits for benefits. Savings limit for pension credit has not changed since it was created. Rosemary wants more help for pensioners by restoring the triple lock, which was abandoned for the first time last autumn. It meant the state pension only increased by just over 3% this April.

If restored retrospectively, the increased pension backdated to April, it would at least help pensioners with their increased bills. Pensioners use more heating because they tend to be at home during the day and it's important for the very elderly and frail to keep warm.

That's from Rosemary, as I say. Good morning to you. Michael Gove and the government talk about people on lower incomes but never once mention us on the lowest. That's certainly the vantage point of Leanne, who's got in touch this morning. Thank you for doing that. And Robin Maidenhead, charming one here. Sorry to

intrude on your women's world. No, welcome. But I have to say that men seem less likely to dramatise and catastrophise over financial pressures, partly because they empathise more with the politicians making the difficult decisions. Rob in Maidenhead, good morning. Should we talk about medical diagnoses then? I'm sure Rob will be back in touch and we'll have a good chat at some point. I'd like to go on, actually. Have you battled long and hard for a medical diagnosis? I know many of you have, actually,

because we've talked about specifically how women haven't been believed over the years and gone again and again to the doctor with all sorts of issues. Well, it is a concern and also perhaps affects how you think about medical diagnoses and how you trust them as being scientific and objective. I'm minded to mention actually a story that's in the news today, a BBC study which shows of 4,000

people, it suggests that a quarter of people in the UK are living with chronic pain, for instance, an often hidden and misunderstood condition. Well, the writer and former consultant neurologist, Jules Montague, has been looking at diagnoses and how they come about and some of the context in the history for her new book, which is called The Imaginary Patient. Good morning. Morning. Thanks for joining us today. We do hope that diagnoses are scientific and objective, but your research tells us otherwise. Yeah, we sort of think of diagnosis as this fundamental truth, I think, and actually it's

just a process of construction. And by that I mean you have an illness, you go to the doctor and they say you've got a disease and they give it a label, or else perhaps they think that you're catastrophizing, as you've heard from a previous correspondent, and you might not get a diagnosis. So the diagnosis goes through lots of stages. It's a construction from the time someone notices a pattern,

a doctor, and then puts it in a textbook, and then you get World Health Organization classification, you know, for example, or criteria. And that's how something comes into being. Yeah, and this can be highly problematic, can't it? Yeah, I think because it's so, you know, there's all these biases and beliefs that inform diagnoses. So we know, for example, one of the diagnoses I talk about in the book is homosexuality, which was a psychiatric diagnosis until 1990 from the World Health Organization. And you can see there, these diagnoses go far beyond science and medicine. And there's all of these political and financial and even colonial influences that create them. So that put people and put people very recently in a position where they were recommended for all sorts of treatment in inverted commas. Yeah, so I spoke to both Jeremy and Sarah for this book. Jeremy received electric shock treatment when he was 18

years old here in the UK. And Sarah received hypnosis in 1990, when, as I said, the diagnosis was still recognised by the WHO. And that has obviously paved the way for ongoing conversion therapy, because people who perform conversion therapy were able to leverage some of the language and the medical terminology of that time to justify what they were doing so it tells you something really about the power of a diagnosis it feels like just a name but if you can leverage it or weaponize it you know you have you have powers that other people simply don't have. I suppose coming away from that particular example, although you have others which are important, I was thinking around some of the conditions we've talked about on the programme that in particular affect women. For instance, fibromyalgia, which is a chronic pain, it's a condition in its own right.

The primary representation of that is pain and also fatigue, for which there is no known condition other than the pain itself. Tell us a bit about how you get to something like that and how that even came about as a diagnosis. Well chances are if you get that diagnosis in the UK it'll take two to six years and several visits to a doctor. The diagnosis was I suppose completely rejected until the 1980s when the American College of Rheumatology came along and gave a classification criteria. But as I said, it's, you know, diagnoses are not simple. And the Journal of Rheumatology, the editor, actually wrote a editorial and it said pain is real, fibromyalgia is not. And that very much informed conversations about fibromyalgia for a long time before the pharmaceutical industry came along and realised there was money in this and did lots of advertising campaigns. And we saw that Pfizer made more money out of this

fibromyalgia drug than almost any other drug. In fact, it outsold Viagra at the time. And so a diagnosis kind of came into being not just through patients' accounts by other external influences as well. And there's another story in the news today I wanted to bring to your attention and to our listeners, which some may have seen. US scientists say they've discovered what caused thousands of soldiers who served in the Gulf War in 1991 to fall sick with mysterious, they were called mysterious, and of course, very debilitating symptoms we now know. They were grouped together under the banner Gulf War Syndrome. You know, more than 20 years on, they've said the blame should be on the nerve agent sarin,

which was released into the air when caches of Iraqi chemical weapons were bombed. Those individuals have been living and not been living very well at all for more than 20 years with no answers. Yeah, and I think part of it is an answer and part of it is a label, but part of it is just acknowledgement

that you are suffering. And I think when we go to the doctor, part of it is a label, but part of it is just acknowledgement that you are suffering. And I think when we go to the doctor, we're not necessarily looking for a diagnosis. In fact, sometimes we want reassurance that we don't have a diagnosis. But when your suffering does not get acknowledgement, you feel invalidated. You feel you have to tell your friends and family, oh, there's nothing. The doctor says there's nothing wrong with me, for example. So having a label for that suffering is really important. And I think some of the language we use around diagnoses can be very stigmatising, particularly diagnoses which are felt to have a psychological substrate, for example. Talk to me about long COVID, because

that's a very recent experience, condition for people and the way that that has come into knowledge and some would say not been acknowledged? I think, I suppose there's a stark contrast to fibromyalgia just in terms of the speed which the terminology of long COVID has evolved. So patients were realising they had symptoms that weren't out there. They weren't part of the vernacular in the acute stages when COVID was really hitting us. And they gathered together online and found kindred spirits

and a terminology grew. And it's a lot of women, wasn't it? A lot of women. And it started with a hashtag in March 2020, long COVID. And within six to eight weeks, that term was being used by the World Health Organization.

It was in the British Medical Journal. So I think that was the quickest journey of any label I think I've ever heard of. And so it meant that patients very, very quickly became pivotal in terms of research and funding in terms of political interest. And that's not to say people with long COVID will, of course, talk about being met at times with disbelief and distrust, but they are part of the conversation. And it feels that conversation is moving more quickly than any other diagnostic conversation, I suppose, I've heard before. Are you cheered by that?

I am. I am. I'm an optimist anyway, I think. You know, I remember my brother when I was four and he was seven telling me some home truths about Santa Claus and telling me there was no such thing as the sky, there was only atmosphere. And I nonetheless hung on to my optimism despite that, although I had to reappraise my relationship with Santa Claus at one point so as a result I'm very optimistic but I think my optimism about long Covid is really well placed actually because the train has already left the station you know we've

got patients already part of that discussion and it would be unthinkable now to have a conference about long Covid and not have people experiencing those symptoms at that conference, front and centre. I'll be so aware that there'll be so many people listening to this who still feel that they're not being believed, even though the term has passed into medical recognition, as it were, you know, that when they go to the doctor, their local doctor, and also they're not being helped. So I suppose that leads to the question of how helpful is a diagnosis if the treatment isn't there? Yeah, exactly. I think part of it, as I said, is that we can have an illness, but it doesn't necessarily get recognised

by a doctor. I think what this conversation about long COVID has brought to us is there is no doubt that people are suffering and there's absolutely no doubt that people have symptoms long after they had an acute illness, for example. So the very fact that conversation is out there brings great hope. And it's messy. Diagnosis is messy. So no diagnosis is ever formed immediately. There's going to be lots of discussions about the terminology around long COVID. Who has what? Some people may not have long COVID at all. We know there are some symptom overlap with menopause, for example. So I suppose there has to be checks and balances, which is really frustrating. But that's not to say the pace that we're having at the moment won't lead to a seismic shift, I think, in how we approach patients and hopefully that they will be believed. You trained and worked as a doctor.

And I get the sense that one of the most annoying things for doctors is when people walk in and say, right, this is what I've got, doctor. They have self-diagnosed. Where do you stand on that? I mean, they could have used a test or something, of course, at home. But they're really convinced that this is what I've got, doctor. They have self-diagnosed. Where do you stand on that? I mean, they could have used a test or something, of course, at home, but they're really convinced that this is what they have. And I found in the few occasions I have been as confident to try and advance that, and in one case it was very relevant, but, you know, it's not a good way to start the meeting. I have an intimate knowledge of this because my father sometimes rings me, remember,

you know, 15 years as a doctor, and he says, Dr. Google told me this and in the last two years Dr. Google has been elevated somehow to Professor Google so I'm very familiar with this and and in a way I don't particularly feel threatened what I find really useful or did was when patients came in and they said these are my symptoms I've written them down this is what I found on Google what is good is there are reputable really decent websites on and my dad uses those to be fair to him if he is listening. And I think that helps and it allays some of the fears that people have and they can go in armed with knowledge. So, you know, it's another case of the train leaving the station because, you know, I want to feel empowered. I want to look at my symptoms online. Of course I do. And if I'm going to go to a doctor

now, I'm absolutely sure I'm going to bring them along and say what I found. And as long as there's space for that discussion, I think that's okay. Well, yes, because of course, you can really reach the wrong conclusion. You can, and there is stuff out there that is terrifying. And one of the big factors in terms of being a doctor, you know, it's a great buzz to do CPR and save someone's life. But one of the other buzzes was actually

just to be able to give reassurance. So someone had said, I found out about this. I'm worried because my friend said it could be this. And I was able to say, we can categorically outrule this condition. So I think reassurance is really important. It is, of course, crucial to go to websites that seem validated, that seem solid. But the next step is to go to a doctor who either can reassure you about the absence of a diagnosis or tell you how to move forward if you do get a diagnosis in the end. Kate's just got in touch to say it took 13 years to be diagnosed with lupus. I was labelled as hysterical, anxious, allergic to black dye etc. I've relocated and I'm unable to see a specialist. I have seen a general rheumatoid consultant who

has been second guessing everything I say and I feel dismissed once again. There is and there are many of these reports of this disconnect. I mean, the government's actually hiring a women's health specialist, a SAR almost, to oversee some of these issues that came up on a special programme we did. But I knew we would get some of these messages. Yeah, and I think if you experience distrust and dismissal very early on in your diagnostic odyssey to try and understand what's going on,

it's very hard to reset that balance, you know, and you end up sort of asking questions and feeling frustrated that you're not being believed the whole way through the journey. I also think when it comes to women, we know there's a lot of stigmatising language, and that's even more prominent for black and minority communities, as I discuss in the book. But that stigmatising language, you know, I remember having some fainting episodes when I was young as a medical student, which resolved. But my wonderful GP wrote in the specialist letter, thank you for seeing this nervous teenager. And I was both a teenager and I was nervous because I was worried what was going on. But that language was stigmatising and the GP had actually got the right diagnosis, which went away of its own accord. But that really

affected my journey through the system. And I imagine people like your listener find if they're not listened to at the very outset, that that can follow them through their really prolonged journey. Well, the book's called The Imaginary Patient, certainly made me think a bit more about what could be and has been influencing diagnosis. Jules Montague, thank you. Thank you. More of your messages, I'm sure, to come. But over the last few months, so many of you have been so kind to be in touch with your tales of love, loss, friendship and memory, all through the power of clothes. That one item that moves with you from house to house, life stage to life stage. This is, of course, our series Threads.

And today, courtesy of Zoe, I get to ask you this. Have you ever owned a scratch and sniff item of clothing? Have you? I've not. I'm gutted about this. But Zoe, you have. Good morning. Good morning. I feel I've missed out on one of life's key experiences. Tell me about this T-shirt. Tell us all. Oh, I bought it way back in 1995 from High Street Giant New Look. And I remember it was £7.99. But there was two in the range. There was a strawberry and a banana. And whilst I was torn,

I went for the strawberry. And it earned its money for me over the years. I think I wore it and wore it and wore it. And I still have it in my possession. I can't quite let it go. I love this because did you actually encourage people to come over to you and scratch you and sniff you? Yes, absolutely. I was a fresher at Liverpool Uni in 95 and I think I bought it to take up to university with me and it was always a great icebreaker.

Apparently the scratch and sniff only lasted six washes, but I never quite let on. Right. So, you know, yeah, it it lasted a lot longer so sorry to get I don't know if you listen a lot to the program I hope you do I love the detail of life so when when when someone would come up to you and have a scratch they they put their face obviously right in and have a sniff oh right in yeah okay are we talking are we talking about stomach are we talking around the boob area where are we it's Yeah, it is on the chest. Oh, lovely.

So this was a good magnet for perhaps making some friends, maybe some lovers? Yeah, well, I was at a campus that had, at the time, it was eight girls to every one boy. So competition was fierce. But I think, you know, it was pre-digital days, so we didn't have the social media connections that people have now. So it took a bit longer to get to know each other. And I think over time, I became the girl with the strawberry T-shirt. It's kind of how you recognised each other. And strawberries became a little bit of a symbol for me.

I'd get birthday cards from friends on and earrings and things over the years. So, yeah, I had a lasting legacy. I love that. I really do. And yet you can't bear to part with it, even though the strawberry is long gone. Oh yes. I don't keep clothes generally, but I just can't quite let go. And I have kept it.

It doesn't fit anymore. It hasn't fit for years, but I've got a daughter who's 12 and I kind of hope she might pick it up and put it on. Even with 90s being as trendy as it is, it's really not her style. So it might end up a cushion cover or something. I don't know.

Oh, yeah, of course. And you'd have to buy some kind of spray. You have to keep the dream alive, some kind of strawberry spray to add to it. I'm really buying into this now. You are, of course, as you say, with a daughter further along in your life, not using it anymore. But where does it live? This is what I always like asking when people keep something it lives in my daughter's chest of drawers because I've put it there with hope that you know one that she might just come across it and think why not

give it a go so that's where it is currently okay so you're not still just kind of having a little look here and there it's it's there hoping to tempt her it's amazing though isn't it we've throughout this conversation and it's been so lovely to talk to so many of you, of our listeners, of what it makes people feel, where it takes them back to in their life. You're smiling throughout this conversation. It only seems to provoke a joyful response in you. Yes, absolutely.

It was a good time of my life. And I think, you know, smell is such a nostalgic sense that even though that synthetic, quite nasty strawberry smell has long since faded, I can kind of bring it to mind really easily. Yeah. Well, thank you. You've brought it to our mind. And I'm going to think of people coming up to have a sniff of you, if that's all right to say. So lovely to talk to you. Good luck with getting your daughter to get on board with the scratch and sniff T-shirt. Love that. All the best, Zoe, all the best to you. Many messages coming in while we're having our conversations,

not least actually off just the back of my conversation there with the doctor turned writer, Jules Montague. With regards to diagnosis, I just wanted to share this one. I gave up going to my GP practice because after 20 years, I was going to scream if told yet again to go away and do my pelvic floor exercises to address bladder incontinence pregnancy childbirth forceps a dnc menopausal hormones accidental damage to my spine and pelvis have all played a part I had my epiphany when I realized that the bulk of our household waste was incontinence pads now I've done eurodynamics my pelvic floor muscles fine, but I've got an overactive

bladder and I'm on meds. The improvement has been amazing, helping to take me out of a place of dismissal and demoralisation. Well, all the power to you and all the best to you. Thank you very much indeed for that message. No name on that, but good morning to you. Now, to bring you up to date with what a lot of us spend time in our minds thinking how we can help, what is going on, what is the picture like? Let's turn our minds to Ukraine, because 78 days since Russia invaded the country, it's people, of course, trying to survive, fight, mourn the dead, as well as, of course, care for the young, old and sick. But how are disabled children being affected by the war in Ukraine? This is the question that the human rights organisation, Disability Rights International, set out to shine a light on with their investigation and have found children with severe disabilities tied to beds in overrun children's homes, unable to cope.

And these are part of their investigation, which has found that thousands, they claim, have been forgotten and abandoned in institutions unable to look after them. Well, the director of its Ukraine office, Helena Karolo, is on the line. She's been visiting the institutions where these children are. Helena, good morning. Welcome to the programme. Good morning. Could we start by talking about perhaps where these children were and how they were living before the war started or just before? Sure. Well, these children were left behind at least twice in their lifetime because in Ukraine we do have a legacy of Soviet era, a vast system of bleak and segregated institutions. So the children with disabilities, even when they have parents, usually end up being taken care of and quote unquote being taken care of in these institutions in that completely segregated and group setting that is not

appropriate to provide any kind of rehabilitation or habilitation for them. So they were in institutions all over Ukraine. When the war started, some of these institutions, and I say some because some are still in the hotspots and occupied area, but some of them were moved from east to the west of the country while partially being moved abroad. So one institution, for example, was split in two. Less disabled children were evacuated abroad together with the staff members. And then the more complex needs kids were left in institutions in the west without their staff members. So if you think about the institutions before the war, when they had one direct care staff person per 10 to 12 bedridden children, I mean, and they are only bedridden because there is not enough staff to take care of them.

Now, when they received children from the East, the evacuees, now they are even more under pressure and under load so even though there's a heroic effort going on by the staff of this institution to take care about more children that they are used to and sometimes to take care of the children that have disabilities they have not seen before i mean they have not been in contact before because they that was for example in mokacho that was an institution for women with very mild or no intellectual disabilities. Their most disability, mostly the reason for their institutionalization was that they were of Roma origin, which is like unprecedented. And so the directors and staff are used to this type of women and, well, residents. And now they get 22, I'm talking about one specific institution, 22 very difficult children who are also traumatised and stressed

from moving all the way across the country. If you look at the map of Ukraine, where Donetsk is and where Zakarpattia is, it's like the biggest stretch of the from east to west. What are you and your colleagues calling for at Disability Rights International? Well, first of all, it's like this is the most important. We need to think about these children and adults with complex disabilities from rights perspective, not from the pity perspective,

because what the system is doing right now and the humanitarian relief what it's doing right now, they are dehumanizing them and think that only medicine and diapers are needed, while we are calling for family placements for each child with disabilities and, of course, full integration to community of adults with disabilities. We believe that in the new Ukraine, the new democracy, every child was, regardless of the difficulty of their disability, should be included, fully included in the community. And the services should be built around the child. Because there was a reform, a pre-war happening. It was a de-socialization reform, which we were part of since 2015. And the reform itself left behind the children

with most complex disabilities. So that would be what you would talk about for, not necessarily the future, but how you think things should be different and should have been different already. Yes, however, even now, I mean, even now we do not, we cannot, while we still have to care about the children right there

in the institutions that are left behind, there are not so many of them because there are about 2,000 of children only with this high, high care needs. And I believe that the humanitarian relief should not be bring diapers into the institution or not even increase the staff numbers in the institutions because institutions themselves are disabling and abusive so um there is a need to to go before emergency family placements because this mechanism within you within ukraine within ukraine or abroad i mean the only reason these children were not evacuated abroad and placed into better care because it was

too difficult to move them. Not impossible, but difficult. So there was nobody willing to accompany them. Well, indeed, I'm also minded to mention last month, the United Nations put it at 2.7 million disabled Ukrainians, including children, their report said, are trapped and abandoned in desperate circumstances as war rages on. So a broader picture, of course,

not just talking about the homes that you've been into, but it has been an important point, but hasn't been made perhaps in the most urgent of ways, which is what you're arguing. Right. I mean, usually these children are invisible. They were invisible before the war, and now they're even more invisible.

The war exacerbated everything. It brought out the good and the bad in the people and systems. And those who were marginalized are even more marginalized now. Those who were vulnerable added multiple layers of vulnerability. And we believe that there is this need to make the voice of these children heard. Do you think that your report could do that? Have you seen a response from the Ukrainian people? Of course, you know, so many of them under duress and trying to survive at the moment. Well, yes, we see the response, but we see mostly the response from abroad, from foreigners.

They're ready to help and come in and volunteer and do anything they need to do. For Ukrainians, I believe that it's more difficult. We don't want to criticize the government in the wartime because it's, I mean, it is a problem, but it is, I mean, it's not. It's war at the moment. It's wartime. They're doing everything they can. And but the most important right now is to make sure these children are not invisible to Ukrainians as well. And this is the first stage. And then we can already talk about providing better care for them.

Otherwise, we will just end up even when the war ends, we will end up with other children being in the same circumstances. Because these institutions were not ready for anything, no contingency plans. They were not ready for evacuation, for example, in the situation of natural disaster or anything. Let alone war or invasion, as we've seen for the last 78 days. Helena Corallo, thank you very much indeed. Director of the Ukrainian Office for the Human Rights Organization, Disability Rights International, who have produced that particular report, looking in detail at these children's homes and making those specific calls. Now, I wanted to give the last word today to a friend of the programme and the host of the BBC podcast, You, Me and the Big C, Deborah James, who has said she is now receiving palliative care for stage four bowel cancer.

You may recall she joined me last July. I've spoken to her many times over the years on and off air. And she spoke on the programme, though, very powerfully about how her illness was going, how she was dealing with it, her fight, as she put it, and her experience with liver failure. Specifically last year, we talked about followed by sepsis. And she just attended Wimbledon only 12 hours after leaving hospital. Many people, of course, have followed Deborah's journey throughout her podcast. She's been an active fundraiser for several different charities and her own very recently set up only in the last couple of days called the Balbae Fund.

The same as her social media handle has now raised more than £2.6 million since she announced that news. I wanted to finish off our programme with her reaction to the first million that was raised. There was one thing that I wanted to do before I died. What I really want to happen is I don't want any other Deborahs to have to go through this. And I want, you know, we know that when we catch cancer early, we can cure it. We know that much more investment needs to take place in cancer.

We know that we have the skills and the passion in the UK to do so. But I just feel that we still need that reminder and that boost and that money. And so before I died, the one thing I knew I wanted to do was set up a fund that can continue, you know, working on some of the things that gave me life. I had a figure in my mind of about a quarter of a million because I thought that would be enough to fund a couple of projects across the charities I wanted to fund um but 24 hours to do a million I'm like absolutely mind blown

and I just cannot thank people enough for their generosity because it kind of it just it just means so much to me it means means kind of, it makes me feel utterly loved. But it makes me feel like we're all kind of in it at the end together and we all want to make a difference and say, you know what, screw you, cancer. You know, we can do better. We can do better for people. And we just need to show who's boss. Deborah James there. Lovely to be able to hear her voice and how well that campaign's going with

your support. That's all for today's Woman's Hour. Thank you so much for your time. Join us again for the next one. Hello, I'm Dr. Michael Mosley. And in my podcast, Just One Thing, I'm investigating some quick, simple and surprising ways to improve your health and life. From eating some dark chocolate. That was really good.

To improve your heart. To playing video games. To enhance your brain power. Oh, dear. A big slouch in our time. Or singing your favourite songs to bolster your brain power. Oh, dear. I'm being slaughtered, aren't I? Or singing your favourite songs to bolster your immune system. So, to benefit your brain and body

in ways you might not expect, here's just one thing you can do right now. Subscribe to the podcast on BBC Sounds. I'm Sarah Treleaven, and for over a year, I've been working on one of the most complex stories I've ever covered. There was somebody out there who was faking pregnancies. I started, like, warning everybody.

Every doula that I know. It was fake. No pregnancy. 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.