Woman's Hour - Weekend Woman’s Hour: Dr Hilary Cass, Meera Syal & Tanika Gupta, SEND teacher training, Sophie Kinsella, Contraception

Episode Date: October 16, 2024

Dr Hilary Cass, now Baroness Cass, led a four year review into children’s gender identity services in England. Her final report concluded that children had been let down by a lack of research and "remarkably weak" evidence on medical interventions, and called for gender services for young people to match the standards of other NHS care. In an exclusive interview Nuala McGovern gets Dr Hilary Cass’s reflections six months on from releasing her landmark report.A Tupperware of Ashes is a play which follows an ambitious Michelin-Star chef, Queenie, played by Meera Syal. It's a family drama about life, immigration and the Indian spiritual cycle of death and rebirth written by playwright Tanika Gupta. Both women joined Anita Rani to talk about the play which is currently on at the National Theatre.Mums say that the UK’s system for children with special educational needs and disabilities (SEND) is broken. An opinion poll from Opinium commissioned by Woman's Hour for a programme on SEND last month revealed that only half of mothers believe their child with SEND is well supported in school, and those in Scotland are the least likely to feel this way. Krupa Padhy takes a look at what is going on behind the scenes with Julie Allan, Professor of Equity and Inclusion at the University of Birmingham; Bev Alderson, National Executive Member of the teaching union NASUWT and Jo Van Herwegen. Professor of Developmental Psychology and Education at University College London.Bestselling author Sophie Kinsella, known for the hugely popular Shopaholic series and many other bestsellers, talks to Nuala about her latest novel, What Does It Feel Like? It is her most autobiographical yet and tells the story of a novelist who wakes up in a hospital bed with no memory of how she got there and learns she’s had surgery to remove a large tumour growing in her brain. She must re-learn how to walk, talk, and write. Six months ago, Sophie shared with her readers on social media that in 2022, she had been diagnosed with glioblastoma, a type of aggressive brain cancer. It is known for its poor prognosis with only 25% of people surviving more than one year, and only 5% survive more than five years.A new report from the British Pregnancy Advisory Service, BPAS, looks into what women want from contraception, the innovations in non-hormonal contraception, and the contraceptive options available to men. Anita was joined by CEO of BPAS Heidi Stewart and 28-year-old Charlotte whose contraceptive pill gave her severe migraines for more than two years before the connection was made.The Northumbrian electro-folk musician Frankie Archer has performed at Glastonbury and The BBC Proms, been featured on ‘Later... With Jools Holland’, and named as One To Watch! She has released a new EP 'Pressure and Persuasion’, through which she tells the stories of four women and girls from centuries past who navigate the same expectations that are put on women today. Frankie joined Nuala to talk about womanhood, tradfolk and to perform her current single, Elsie Marley.Presenter: Krupa Padhy Producer: Annette Wells Editor: Rebecca Myatt

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, this is Krupapati and you're listening to the Woman's Hour podcast. Welcome to Weekend Woman's Hour with me, Krupapati. In the next hour, Sophie Kinsella, the hugely successful author on her latest novel, What Does It Feel Like? It tells the story of a novelist who wakes up in a hospital bed and learns she's had surgery to remove a tumour in her brain. Six months ago, Sophie shared with her readers on social media that she herself had been diagnosed with an aggressive form of brain cancer.

We had to tell our children. We wanted it to feel like a normal family conversation, like this is just another challenge. We all have challenges in our life. And we told them in the most gentle way that we could. And then we played Scrabble. And it was the best way, I think, for us as a family to process it. We'll talk about the subject of teacher training

and whether teachers feel sufficiently equipped with the skills and resources to help children with special educational needs and disabilities. We'll also discuss contraception as a new survey has been conducted to see what needs to be included in a conversation around contraception innovation. We'll hear from a powerhouse duo, playwright Tanika Gupta and award-winning actor Meera Sain on their new play, which explores the story of a woman experiencing early-onset Alzheimer's. Plus, music from the Northumbrian electro-folk musician Frankie Archer.

There is lots to get through, so settle in for the hour. Dr Hilary Cass, now Baroness Cass, led a four-year review into children's gender identity services in England. Her final report, which came out in April this year, concluded that children had been let down by a lack of research and, as she put it, remarkably weak evidence on medical interventions in gender care. She called for gender services for young people to match the standards of other NHS care. Both the previous Conservative government and the current Labour one accepted all the review's recommendations.

However, there has also been criticism and backlash from many quarters. Last month, the British Medical Association announced that it will carry out its own evidence-led evaluation of the review, which it says it will approach neutrally. So what are Dr Hilary Cass's reflections six months on from releasing her landmark report? Dr Cass joined Nuala this week for an exclusive Woman's Hour interview and Nuala began by asking her if she was satisfied with the progress made so far. I'm really pleased with the progress so far. Obviously we have a long way to go but NHS England has been really proactive in implementing the report. We've got two new centres up and running already.

We've got another one coming online within the next couple of months and then there'll be a further one next year and more to follow. They have picked up on the real imperative around research so they're working with NIHR to make sure that we improve on the research base. And I think the thing that I've been really pleased about is talking to many, many clinical staff since the report was released. They feel more confident that they do have the transferable skills to look after these children and young people? It's interesting you say that because many were wondering whether recruitment and training

would be adequate for these clinics. In your final report, you said you had, and I quote, hope to take learning from these interim services, but instead you learned about the considerable challenges faced in their establishment from a highly emotive and politicised arena.

And I will just give the context to our listeners that the Tavistock JIDS clinic closed in March 2024 and the others are opening, as you mentioned, other gender clinics, London, Liverpool, another in Bristol, for example. What about that? How is the recruitment and training going, particularly within that emotive and politicised arena? We've got some fantastic clinicians already working in the new services with really broad

based skills so they've got skills in autism and in young people's health so that's the first step is treating these young people just like any other young people in distress and making sure they've got those wraparound services and recruitment is slow but steady. I think when we did a consultation with clinicians early on in the course of the review what came across is they were fearful, they didn't know what to do, it was highly emotive, they knew the evidence was weak and they needed support and guidance. And I think now they recognise that these are the same young people they're seeing every day in clinic with the same aspirations, the same fears, the same thrills and spills of growing up. And yes, they have got the capability to see them. What do you think they were fearful of? Well, it is a polarising area as we know

many of them had been told that their only role was to affirm the young person in their identified gender and refer them on to the Tavistock and so just ordinary things like treating depression, treating anxiety, making a diagnosis of neurodiversity, all the things they would do for any other distressed child, they weren't doing for these young people, which was exceptionalising them, it was treating them differently. So these young people were just getting a worse deal than other young people. And you are underlining there in your answer, but also have done in other places, that you wanted clinicians and want clinicians to look at the whole child,

not only their gender identity or expression, but this holistic approach will only work if services are available in adolescents' mental health, for example, to be able to refer them to these new clinics that you have outlined. Looking at some of the figures figures in March 2024, this is according to the Children's Commissioner, more than a quarter of a million children and young people were waiting for mental health support in England. And number one, I'm wondering how can they work in the way you want them to if in fact there is this waiting list and I do have a second part about that waiting.

Are you concerned about what the impact might be on those young people? So we are under-invested in adolescent services, in all mental health services for young people and there are multiple initiatives to try and address that gap. But this particular group were sitting on a sideline waiting list that didn't have the mix of staff that they needed. So, yes, all young people are waiting too long. That is true. But these young people should not be more disadvantaged than the rest. But if we can get services right across the piece, then we can get them right for this group.

The bigger problem obviously needs a lot of careful thought about how we make this a more attractive area for young doctors and psychologists and other staff to come into. Do you think it's not? I think that it certainly can be, but when you have shortfalls in staffing, then you can get into a vicious cycle where that's very hard for the staff in post because they're having to work so hard. But I think it can be a fantastically interesting, I'm not talking now just about gender services, I'm talking about services for young people with physical and mental health problems. It can be an incredibly rewarding area to work in and so I hope I might be able to do a pitch to attract

young professionals into it. One big change for these clinics that you have mentioned, that are in the process of opening or being opened in the future, is that they won't be prescribing puberty blocking drugs. And a ban on new prescriptions of puberty blockers is now effectively in place across the UK. The only way these drugs can be accessed now in any of the four nations is via a clinical trial, which is hoping to start recruiting participants in the new year. But children that are already on them, doctor, can stay on them? That's correct, yeah. So what do you say to children and parents who say with those moves you have withdrawn gender affirming health care?

So puberty blockers are only one part of care. But they have been a part that has been a large part of the discussion. They have been a disproportionate amount of the discussion because actually the evidence doesn't show benefit for the majority of young people who go on them and so in some senses they have been oversold to young people as being the thing that is going to make them feel dramatically better. The commonest age for young people to go on puberty blockers at the Tavistock was 15, by which time they were most of the way through puberty. And so it might have been better to start thinking about whether masculinising and feminising hormones

were the right thing for them. But as many young people felt worse on puberty blockers as felt better. But what are we looking at there when you say these figures of people feeling worse or feeling better? What what are we looking at there when you say these figures of people feeling worse or feeling better? What studies are we looking at? What numbers are we looking at? What's the evidence? So the studies are very limited, actually. There was an initial study in the Netherlands, which showed a small increase in mental health well-being. But the UK study, which had less than 100 young people in,

just didn't reproduce those results. There may certainly be a small number of young people who might benefit from puberty blockers. We just don't know who they are. And we don't know whether the harms outweigh the benefits in other young people and if I was pitching any other drug to you to give to children with that kind of data you'd say no way I'm not giving that to my child based on that evidence I want better evidence and that's what we're trying to achieve with the study. So these are for children that are under 18 at the moment. That is the ban that is in place. And a direct statement to those that are angry that these drugs have been withdrawn? Well, they've not been withdrawn.

In certain circumstances. If clinical staff feel that a young person may benefit from them, they will go into the study. A clinical trial. The clinical trial. And what I would say is we have evidence from other areas of medicine that people who are in clinical trials actually do better than people who aren't. We know that from cancer because you look after them, you know, very assiduously and very carefully. The follow-ups are very careful. So actually, young people won't be disadvantaged by going into

a trial. We'll just get better information for those coming behind. But for any of those right now who want to go into that clinical trial, will there be enough spots? Yes. I mean, there will be. There's no limit. In fact, on the contrary, the more young people who go into the trial, the better information you can get. What's the impact been on you? For the most part, I have been really pleased to have done this piece of work. I've met some fantastic people from all sides of the debate, some courageous people,

both those who are now living successful adult lives as a trans man or woman or non-binary. I've also met some brilliant clinicians and academics. So it's been a really fulfilling experience. It's been disappointing that there has been the disinformation. There should be healthy debate, but the disinformation has been disappointing. Which I think you're referring to some that came out before your report was released that you feel was incorrect about how the study and review was conducted. But you know, I did read that you were advised not to take public transport at one point due to security concerns. Yeah, that was just in the very early stages, but it's not been

a problem since I got here on the train today. Dr. Hilary Cass there. Next, an extraordinary play, A Tupperware of Ashes follows an ambitious Michelin star chef, Queenie. But when her children notice gaps in her memory, they're faced with a choice no child wants to make. It's a family drama about immigration, life and the Indian spiritual cycle of death and rebirth written by the playwright Tanika Gupta. Queenie is played by Meera Sile who bagged the BAFTA Fellowship Award last year for shows such as Goodness Gracious Me or more recently Mrs Sidhu Investigates. Tanika Gupta and Meera Sile joined Anita Rani this week and Anita began by asking Tanika what it felt like to finally see this play come to life.

It's been about four years since it was commissioned. But I was always commissioned to write a play for Meera. So although I've been writing it for four years, I've been in cahoots with Meera about what I was going to write about. And so that's been a really joyous process. So what's it about? Well you've basically told the story in a nutshell which is about Queenie who goes through the process of early onset dementia, Alzheimer's and it's the effect it has on her children but even even though that sounds very, very grim,

the story is also about her memories and about her remembering her husband, who died 20 years before, who comes back to basically guide her. And Mira, you play Queenie. Tell us about her. Who is she? Oh, Queenie's formidable.

I think she's a collision of all those incredible matriarchs that we all grew up with who were backbones of steel, very tough on their kids. But when you're living with it, you don't like it much. But as you get older, you begin to appreciate the incredible strength it took to come to this country and survive and bring your kids up. She's a high achiever. And she's not a very nice mother, to be honest.

She's been a very nice mother to be honest she's been a very hard mother to them and that complicates an already complicated family dynamic because it's hard enough to look after an ailing parent when you have a good relationship but when you've had quite a difficult one even more things come to the fore so I love the fact that she's written in a completely unsentimental way, in a real way. Tanika's gift is that she's balanced that with ultimately sympathy for Queenie as well. I understand there are hints of King Lear behind the character in the writing. Well, that was the original commission that I was going to write a version of King Lear for Mira. But then as the play progressed, I thought, no, we want to make it more modern.

We want to make it about now. We want to make it about social care and how you look after the elderly in our community. Why? Where did that subject come from? Well, it came from both me and Mira. We were both going through similar situations. My mother died six years ago. And during that time,

I was very privileged to be with her while she died. But there were so many strange things that were happening, hallucinations. And, you know, on the one hand, you could say it was the morphine. But on the other hand, it kind of felt something quite profound was happening, that she kept seeing people who were coming back for her, who were guiding her. Mira, on your own experience? Yeah well sadly I've had very personal experience of Alzheimer's my father died of it he was he suffered from it for seven years and then my mum got a very rare form of dementia in her last

few months of life but previous to that she'd been living with us and me and my brother shared care for over a decade so Tanuka and I used to hold each other up during those difficult days and share our experiences and it is a privilege but it's also very hard and you become acutely aware of how alone you are as a carer as a family carer there's so little support financially and emotionally and it's hugely expensive and it drains you on every level and millions of people are going through it and also for both of us there are added cultural expectations and pressures which are all explained in the play but when we were holding each other up and crying on each other's shoulders and crying for the parents we were losing slowly um we you know i used to say to Seneca you have to write

about this because people need to have the cathartic experience of sharing this pain and also sometimes the joy of it and i think that's why we've had such extraordinary reactions to the play because so many people are sitting there and we can hear them and see crying and laughing with us and then we know they're going through it. As you were talking about that Mira I thought that's that's that'll be why people are reacting to it because of the emotion and the experience of the two of you talking about this, holding each other up. It's all there. It's all in the writing. You mentioned there that you talk about the stigma and the taboos within the South Asian culture dealing with this.

And one of those is putting your parents into a care home? Yes, well, I mean, it's very difficult in this country to, you know, we don't have servants and wider family that will help us with that. So it literally comes down to the immediate family and sometimes that's impossible and there is a stigma. I mean, I remember all my aunties saying to me, you absolutely have to look after your mother. You cannot put her in a home. You cannot put her in a home.

And even at the end, my mum was saying, put me in a home so that I can get cared for. And then you also explore what happens when South Asian people are put into care homes. Yeah. I mean, there obviously are lots of Asian care homes now that do cater. But often it's, you know, our elderly are going into care homes where there is no recognition of their culture. So, you know, they're getting shepherd's pie and peas for dinner and that is completely alien to them and often they often they lose their language and so they revert back to their mother tongue and cannot actually remember how to speak English that that also is a big problem um so yeah I mean it's it's ongoing something that I think people probably don't even think about Mira yes um well certainly for my father he uh was in a great care home, but wasn't culturally specific to him. My mum spent her last few months in a brilliant care home, which was run by a Punjabi woman. It was her own business. There were only 20 residents. All the staff were Punjabi, spoke Punjabi, the food was.

And for my mum, it felt like she was sitting with all her friends and it was such a relief for us to know that she felt at home. So these things are really important. And as Tanika said, as you lose language, just things like the carers call you auntie. Yeah, something as simple as that. Which is what you would expect for someone from your own and the food that you eat and the music that you're listening to all of it all of it's so important

there's so much humanity in this play because you also look at who is looking after our elderly within these care homes there's an actor in there who's the one white actor in the whole show and he plays a multiple array of characters from the doctors to the lawyer but I think one of the audience's favorite characters is Pavel who's the care worker and whilst the children are worrying that their mother is in a in a care home during Covid as well so they can't even visit and nobody's looking after her actually Pavel is the one who is absolutely you know sympathetic and beautiful with her and just allows her to be who she is and he has he has definitely been very very well received as a character as an actor but also because it just shows how how important those carers are they're

the people that are looking after our parents and Pa Pavel is also not English. He is Polish. Yeah, we've had so much amazing feedback from people who work in the caring profession thanking Tanika for portraying carers and what they really do. And certainly that was the irony for me, that with both my parents, the majority of their carers were from immigrant backgrounds,

being paid very, very little and had abandoned and were not seeing their own families and parents in order to look after our parents what a privilege and we pay them so little and there is a real crisis in care at the moment in this country and there's a tsunami that's already on us one in three people in this country will be hit by Alzheimer's or dementia it's the UK's biggest killer right now more than cancer and we are not prepared for it and you are able to put on this play Tanika and begin that conversation a really important conversation can I ask you Mira what that experience is like so how did you get into the frame of mind to play Queenie? I suppose sometimes you just wait for that part where you connect on every level. And for me, this was such a personal project because I do feel I'm telling my parents' story and the story

of many other parents and children I've seen going through it. And whilst you don't have to always have personal experience of every role you play, I think with this one, it really does inform what you bring to it. I relive a lot of what I felt and saw, what my mother felt and saw every night. And while that's painful, it's also such an honour to share that story, because I know from what we're getting back from the audience that it's a conversation we need to have. And for me, this is what theatre is about and where it's at its most powerful, when we are sharing those communal experiences that need to be shared. And I hope that people come out of it not feeling grim but feeling lighter because the message of the play is love endures even beyond death love endures

Mira Seil and Tanika Gupta talking to Anita there and the Tupperware of Ashes is playing in the Dorfman Theatre part of the National Theatre if you were listening last month to the edition of Woman's Hour dedicated to the topic of SEND you'll have heard how many parents of children with special educational needs and disabilities have been contacting this programme to say that the UK SEND system is broken. An opinion poll commissioned by Woman's Hour revealed that only half of mothers believe their child with SEND is well supported in school, and those in Scotland are least likely to feel this way. Just to be clear about the language here,

SEN stands for Children with Special Educational Needs and Disabilities in England. In Scotland, the system is called ASN, Additional Support Needs. In Wales, it's ALN, Additional Learning Needs. And in Northern Ireland, it is known as the SEN Register, that is the Special Educational Needs Register. I was joined by Jo Van Herwegen, Professor of Developmental Psychology and Education at University College London, Bev Alderson, National Executive Member of the Teaching Union, NASUWT, and Julie Allen, Professor of Equity and Inclusion at the University of Birmingham, to take a closer look at what's going on behind the scenes of what is happening in the classroom.

I asked Bev Alderson what she hears from teachers about their experiences in the classroom of teaching children with special educational needs. So my members are telling me that the training that they receive in universities and then in their early years career, so they're supposed to be mentored for the first two years of teaching is very very limited and that is really probably as far as training goes in terms of new teachers and that does not cover all the needs that the teacher is going to face in the classroom um i think not all universities offer the same sort of training as well and school-based training for teachers is where the issue really lies because the SENCO

should be training new staff and new support staff but the SENCOs now are just not able to do that job because they're swamped by paperwork, they're covering too many roles, they're usually the safeguarding lead, the child protection lead and they have so much paperwork which is statutory to fulfil that their time is limited in terms of supporting any teachers or TAs and a real crux of the situation is that TAs have been made redundant in many schools because of budget cuts that schools cannot afford to keep TAs and they're the first people to go and when there is an immediate need and a child comes in who does need a TA trying to recruit somebody these days is is impossible because the pay is low the job is, the training is virtually non-existent,

and it's a really tricky job. And to be frank, TAs can earn more in working in little and older than they work doing that really difficult job. In terms of, I think one of the other issues is, well, I've mentioned the workload associated with SEND and that goes down to the class teachers because the SENCO just doesn't have the time to do it and what should be happening is the SENCO should be working alongside teachers in the classroom because they probably have had training and they're you know they've built up experience and skills but they just don't have the time to get into the classrooms to support and the other lack of training comes from the fact that when a child has SEND and they

have an EHCP it's supposed to be a multi-agency support for that child so people like speech therapists, educational psychologists, CAMHS, are supposed to support that child and be a team around the child. And often we're not seeing that happening because there are no ed psychs available. CAMHS has got waiting lists of up to two years. Speech, we just can't find them. And those people used to come in and deliver training into schools when local authorities had teams of those people. That's where the training came from.

And those services are just not there anymore. So what I'm hearing from you loud and clear is that budget issues are there, resources are limited, time is limited, and that is what Sarah in Stockport has got in touch to also say. I'm a science secondary teacher. I've taught at my most recent school for three years. Out of approximately 35 groups I've taught in the last three years,

I've had only two with learning support assistance. I definitely do not provide the support needed to the many, many students I teach with SEND needs. My understanding is that budget cuts are the reason my school can't afford to employ enough learning support. Let me bring in Jo van Herwigen from University College London. Welcome to Women's Hour, Jo. Listening there, highlighting the dilemmas, the many dilemmas facing teachers there, the challenges.

How can SEND teaching be improved in your opinion? Yeah, a lot of the issues who resonate which are what we've heard from in our research listening to teachers and there's a number of things i think that can be done first of all you know creating toolkits trusted toolkits for teachers that they can access problem is we want teachers to use evidence in informed practice or research informed practice but that means they need to have access to research. They don't have the time to go and read articles, etc. So it's about providing them with the tools, the latest research about what works in a classroom for the students with SENS, what doesn't work in a classroom. Research has moved on. And so we've created a toolkit

called Metasense. It's a database that teachers can access around what interventions have been shown to work in research and which interventions haven't for particular groups. It's free to use, it's co-produced with teachers, for teachers. It's a starting point, I know we're not the only ones, there are other toolkits. But I think it's important that we start to highlight these toolkits so that we think it's important that we start to highlight these toolkits so that we can support teachers as much as we can, not expecting them to do a lot of research. I think the other point that has been raised here as well is the fact that looking again at that initial teacher training. And I think what is happening in a lot of European countries

is not only that they're being educated to a master's level but that they also have more knowledge around child development and that means that they can better understand why a child might have difficulties with for example mathematics for very different reasons and therefore start to understand what might work better for certain children compared to other children and so that teachers are incredibly creative problem solvers but you need to understand the problem first before you can solve it and it's kind of giving them the tools to do that that is required let me just pause you there and bring this message in from allison because it's related to what you've been saying um I'm a retired teacher, current school governor

and a grandmother to a child with autism. From my experience, the biggest gap in training is at preschool level. Some preschool SENCOs are brilliant, but a lot aren't. The earlier children are identified as having extra needs, the better their chances in life. Also councils need to process applications for extra funding far quicker than they do now

because that's a good point from Alison. It's just about the school it's not just about the classroom it's about all of these pieces of the web I imagine coming together. Absolutely and this is where I think a third solution is required is kind of having more short courses outside of teacher training that allow not only teachers but the TAs we've been talking about also the SENCOs also the other people involved and sometimes that is still professionals as educational psychologists through for example short courses that can be done online at their own pace when they are free and they can be provided in a very cheap and effective way really to upskill people and I don't

think they've been utilized a lot and actually this is where the government could make a change by for example making some of their training maybe mandatory within EHCPs to making sure that when staff are working with a child with special educational needs and disabilities, they are required to have a couple of minimal criteria or at least have looked at a video or a handbook or a toolkit to help support students with special educational needs in the classroom. Jo van Herwegen and Beth Alderson, a Department for Education spokesperson said, for too long, children and young people with SEND have been let down by a system that is not working. But this government is determined to deliver change.

Urgent work is already underway to ensure more children are getting earlier and better support to thrive in education through our curriculum and assessment review. Ofsted reforms and new early years SEND training. Still to come on the programme, we'll be talking about changing attitudes about contraception, music from the Northumbrian electro-folk musician Frankie Archer, and remember, you can enjoy Woman's Hour any hour of the day if you can't join us live at 10am during the week. Just subscribe to the Daily Podcast for free via BBC Sounds. The author Sophie Kinsella is known for the hugely popular Shopaholic series and many other bestsellers. Her latest novel, What Does It Feel Like,

is her most autobiographical. It tells the story of a novelist who wakes up in a hospital bed with no memory of how she got there and learns she's had surgery to remove a large tumour growing in her brain. She must relearn how to walk, talk and write again. Six months ago, Sophie shared with her readers on social media that in 2022 she'd been diagnosed with glioblastoma, an aggressive form of brain cancer. It's known for its poor prognosis, with only 25% of people surviving more than one year

and only 5% surviving more than five years. Sophie joined NULA this week. She began by asking her why she had decided to go public about her diagnosis in April this year and how difficult a decision it had been. It was. It took me a lot of strength to go public. And I think anyone who's had any kind of news to deliver will understand that it's

a difficult thing to do because of the reaction you get. And my husband and I had got used to telling just one person at a time. And that was hard enough. So it took quite a lot of guts to go out and tell, you know, a shed load of people all at the same time, this, you know, dramatic thing has happened to me. But I was actually tired of keeping it under wraps, because there's being private, and then there's being secretive. And it was becoming harder and harder to hide. I'd lost weight in my face. And I was due to do an event with my readers to publicize another book of mine, The Burnout. And I realized that I couldn't go up there and do an event without being honest. I've always had a really kind of close connection with my

readers. And this is part of who I am now. I was about to say, I just think people have taken you to their hearts before this diagnosis with your novels. And I can't imagine what was the response like? It was overwhelming. So much love poured out at me, so much support, so many messages, some just wishing me well, but others sharing their own stories, which was very moving, good stories. And it has to be said some not so good stories, but you know, it's all part of the reality of this situation. And I just felt blown away, really. So in the book, our protagonist is Eve. She is an author. She writes about shopping at times. No spoilers, but has whatever, an epiphany at times. So it is fiction, but it is also autobiographical. And I just wondered when I was reading it, why is it fiction, number one? And how do you walk the line, number two?

Oh, I love that. Well, yes, the clues are there. Novelist. She also has five children. Yes, I noticed. And a very nice husband. A lot of coincidences there. I fictionalized it because I write fiction is the simple answer.

I knew I had to write about this experience, even as I was going through it. It was the most surreal and powerful and kind of extraordinary experience that had ever happened to me in my life. And I've always I've always processed my life through writing, whether it's shopping too much or falling in love or having babies. It's all gone into my books somewhere or other. And I knew I wanted to write about it. And at first I thought, well, shall I write a memoir? I've never done that before, but I could write about this experience. And I realised that I didn't want to. I like making it up. I don't like facts. I don't like being held down to facts. I didn't want to feel that it's got to be completely accurate every single day, every doctor's name, everything. I like making up a narrative. So I decided that this was the best format for me to do a book. And as you say, it's my most autobiographical book. It's basically me. So part of your diagnosis means that you have short term memory loss at times or have had at

times. But the detail, it's excruciatingly perfect. And I'm wondering how, as a writer, did you do that? Do you remember those aspects of waking up in a hospital, for example, I wanted to make notes about what was going on. I knew that it was just so bizarre to wake up and you can't move your head, to wake up and you thought you could walk, but now you can't walk, to wake up and realize that you've lost days of your life, never mind the diagnosis itself. So I took notes. I couldn't write. My writing ability had gone. I couldn't hold a pen properly, but I could talk and I could turn the dictate function on my phone and I could talk into my phone. And that's what I did. It's like, I think when I was reading that there are innate parts of our personality. You are a writer. And so that bit stayed solid, let's say.

Your love for your husband, you wanted him to come around so you could see him when you couldn't move your head, is solid as a rock. And your children, you know, and that you wanted to, you had that maternal,

where are they? Are they okay? It's so interesting, the rocks that are there even when everything else is floating. It is interesting because so much of me seemed to drift away. But you're right, the things that matter. And I think that having now been through the diagnosis and the kind of the horror of learning what was happening to me, I have really realised what is important to me,

what is solid and what doesn't matter anymore. How are you today? I mean, you look well to me. Oh, thank you very much. I feel good. I feel well. I mean, that's what's so bizarre about this illness is that you can go about the world. People say, oh, but you look so fine and you look so well. Is that helpful or not? Well, no, I'd like to feel I look well to be honest the doctor always says how are you feeling so i always think well if i feel well and look well that's that's got to be a good sign that's you know

something to cling on to let's talk about some of the adaptations that eve made maybe you have made maybe you haven't uh such as the bucket list. She doesn't want to travel the world. Instead, she's more interested in normal plus, which I loved, like good marmalade instead of the cheaper variety in the supermarket. Yes, that's very much from real life. So, I mean, the narrative is you're diagnosed with a terrible disease and you put on your lycra and you climb Everest

there there's this sort of narrative that you're going to do extraordinary outlandish things to celebrate life to create memories and anyway I'm afraid that that narrative didn't speak to me I just kept thinking well do I want to do this not really Do I want to swim with the dolphins? Not really. And I realised that what I'm valuing more and more is just normal life. And the normal plus comes about when you just add a little treat, you just give yourself a little treat. And it turns a normal experience into a just a slightly more fun experience. And I should probably say as well about the book, surreal is a good word, because you're kind of going through this dreamlike, nightmarish at times situation. maybe this is normal plus as well, a game of Scrabble with the children that Eve uses to introduce normality, but also talk about what may or may not happen.

Yes, that again, I have to say is from real life. So we had to tell our children, we had to choose a good time when we had a lot of days free to process the news. I should say they're between 12 and 28. Yes, 12 and 28. Five. Five of them.

People kept saying that to me in the hospital. Five. Five, got it. And we wanted this to be, you know, dialed down in terms of drama. We wanted it to feel like a normal family conversation, like this is just another challenge. We all have challenges in our life. This is bigger than some of them, but we're going

to deal with it in the same way that we do. And we told them in the most gentle way that we could, you know, not being deceitful, but not over-dramatising it. And then we played Scrabble. And it was the best thing to do because everyone could kind of talk about the Scrabble, but talk about the news. And we blended it all together. And it was the best way, I think, for us as a family to process it.

And being together. But talking about being told this terrible truth, I guess, Nick in the book, Eve's husband, has that job, but has to tell Eve again and again because of short-term memory loss. Yes, yes, and this was us. So I would forget. I would wake up every day and I'd forget. I'd forget who the nurses were.

I would forget why I'm in hospital. And I had been told that I had cancer and then I would forget. And my husband had to tell me again. And then you would have to go through all those emotions again of hearing that news. Yeah. And what about him? I think it was really hard for him. Really hard. He showed his love for me at that time more than he ever has because he would just patiently tell me again and tell me again and wait for me to react. I don't know how we got through it, but we did just with love.

Sophie Kinsella there. Next, how do you feel about contraception? Do you or did you take it? I wonder what your experience was and what you would change if you could. These questions and more are what the charity, the British Pregnancy Advisory Service or BPAS, are asking in a new report that is hoping to start a conversation around changing attitudes to contraception and what could be changed in the future. Of course, hormonal contraception has been and remains revolutionary for women, not only in terms of controlling fertility, but also enabling women to regulate their periods, alleviate symptoms like period pain and manage conditions like endometriosis. Anita was joined by Charlotte, who is 28. Her contraceptive pill gave her severe migraines more than two years before the connection was made with what was causing the problem. And joining them was Heidi Stewart, the CEO of BPAS. Anita asked Heidi why BPAS wants a

national conversation around contraception. Quite simply, women are being let down. We've got too many women falling through the cracks in our healthcare system. They're struggling to access the contraception when they need it. And there's been no major innovation in contraception since the 1960s. BPAS has prided itself on always having women's backs. And this report continues in the BPAS way. We want to start a real national conversation, one that really listens to women and pushes for those changes. Charlotte, do you agree? A national national conversation is that what needs to happen? Oh absolutely I'm so used to having this kind of stigma around it and not discussing things I think a really interesting example is when I was on so this is separate to even the migraine incident it's just thinking back over every time I've had

contraception there's always been something that went wrong So I was on the progesterone only pill for a short period and it was the most depressed I felt consistently over about two weeks. I describe it as I was stuck on a three or a four out of 10. I was either on the verge of tears or just wanting to hit someone. And it was actually really interesting because my brother's reaction, we were on a family holiday and we just said, oh, I'm really sorry I'm acting like this, etc, etc. And he just his reaction to me talking about it wasn't like shame or don't ever talk to me again. It was, I'm so sorry that this has happened. And all of a sudden it opened this door in my mind of going,

this isn't something we should be ashamed of. This is something that's happened to me, and it really didn't need to. Heidi, Bee passed a survey with more than 1,000 women aged 18 to 45. You've probably heard stories like that, numerous stories like Charlotte's, because you're asking them about their use and attitudes to contraception. So let's find out what were the key findings? We were looking at the current contraceptive landscape, what women were using, what barriers they faced in accessing, and crucially what appetite there was for further innovation so that we didn't have to hear stories like Charlotte's.

And the results were really telling. We found that nearly half of women at 49% faced barriers to even accessing the contraception they wanted, whether that was from being unable to get a GP appointment or to families and partners blocking access. 49% said it was a huge concern. And I think on top of that, what we noticed was there was a real dissatisfaction with the side effects that Charlotte's talked about around hormonal methods. 84% of the women that spoke to us had switched their methods at least once. It is only a snapshot, but it does show a clear need for better options, more access for women. And a lot of women just don't want the same old hormonal contraception choices that they've been given since the 1960s.

How did the answers change depending on the age of women? Because, you know, 18 to 45 is quite a range. It was quite a range, but actually we found commonality through all of it. The biggest issue was around the hormonal contraception, the side effects. And Charlotte's touched on some of that range from hair loss, some range from depression, anxiety, and also weight gain. So Charlotte, what did you choose to do? that was almost made for me when I was on the combined pill which is the one that I'd had for years the progesterone only was only because I changed DP and every time you change DP you have to go in and they have to check your height and weight again and then you can go back on but I remember sitting in the doctor's surgery saying right okay you've got my height and weight can I go back on the combined pill it's been working just fine and then he said you just told me you get migraines and I said well yes and he, there's no way you should be on this. You should never have been on this.

And I just sort of looked at him and I went, well, I don't, I don't really know what to do. And sort of out of the options, I went, I'll go with coil, which is a whole conversation with itself. But I remember just feeling that I'd been let down. Why was it up to me to know that my migraine stopped? Like all of my issues were related to this as soon as I came off the combined my migraines dropped about tenfold and I just thought that's so many days of my life that I just could have had. And what kind of conversations have you been having with your friends? Have they gone through similar things? Honestly quite often it's worse I thought it was interesting when I was sort of discussing this and I had a friend only yesterday just brought up

that when she had her coil in it took them about four times and I just thought it was horrific the first time so I couldn't imagine her going through that I had friends who like me they were just feeling really headachy and ill and they would go into medical professionals and say oh I really think it's tied to this and you know every time I take this I feel like this and just being told that they were wrong it was in their head also just being told things that just weren't true like oh it's no link to depression at all it's no link to how you're feeling and I was like well notoriously I know my cycle even if I wasn't on anything impacts how I'm feeling so why would taking a hormone not impact how I'm feeling it just doesn't make any sense. Heidi how many options

do women actually have when it comes to something like the pill? So in terms of options, you've got the combined, the hormonal, but there's been no innovation at all in the last 60 years in reality. I mean, there are a number of other contraception options out there, but they are limited. And what we've not seen is any investment, any innovations, any research into that whole area for so long now. I mean, of course, I must mention that there are plenty of women who have no problems with their contraceptive pill at all. But of course, it's good that we are discussing the issues that arise. What are the side effects? What can they be? So the majority of women that spoke to us said that those included anxiety, mood swings, obviously changes in weight. But we also had women talk to us about quite severe depression and hair loss.

These aren't minor inconveniences. For some, they're actually quite life-changing impacts that make it really hard to stay on hormonal methods long term, which is why we're calling for more choice and innovation in the non-hormonal contraception options for women. I want to talk about something else that comes up in the report, contragestives. What are they and how do they work? What's a contragestive? A contragestive is a bit of a hard sell, let's be honest, because contragestive is not known as a word and nobody's actually heard of them. So what you're saying is what most people say to us but in in essence a contragestive is a non-hormonal pill that can be taken regularly whether that's

weekly or monthly it can also be taken on demand or to either prevent implantation or to shed the wound lining once implantation has occurred and what they do is they put the fertility in the hands of women. They offer a new way for women to control their fertility without relying on synthetic hormones. Crucially, though, they offer a huge amount of flexibility. What about putting fertility in the hands of men? I saw that in the report women were overwhelmingly supportive. 76% of their male sexual partners

using long-term acting reversible contraceptives and trust them to do so reliably. Were you surprised by that? Not at all. I think women are tired of carrying the whole burden of contraception alone and they're ready for male partners to share that responsibility,

especially those in long-term relationships. And it's quite a shift that I think we've needed for a long time. When you think about it, women are only fertile for a few days a month, and yet men are fertile every day of the year. So it is time to share the load, really. Is it something you'd consider? What about your friend, Charlotte? Oh, absolutely. It was quite funny chatting to friends about this, because a friend did say, she was like, well, a guy can get someone pregnant 30 days out of 30 in a month and I can't really do that um but yeah it's something and yet it's our responsibility yes it always is funny that um yeah um it is something I've actually talked about with my

like previous male partners and things because it's just I want to know their opinion on it and what have they said oh well I didn't tell them I was like I would treat it as a red flag if they say oh absolutely not um but no they have been like sort of a bit cautious because what's interesting then is actually, I think, with a few of them, they notice for the first time they go, oh, well, you know, you say there are side effects, but what are they? And I was like, so you weren't interested before or you were just kind of nodding along. But now you actually are interested because it might impact you. And that I think is very telling. I should say my current partner was very, very good and he was very, very supportive. But yes, it is something that I just thought,

it's always seen as effectively, it's your dirty little secret, you sort it out in your magical, mysterious female ways, which is very odd. How close are we, Heidi, to those being available? So there has been exciting progress with male contraceptives, particularly with the gels. And the gel is applied daily to the shoulders. And what it does is it combines two hormones, which effectively reduces sperm

production. It's totally reversible, which means fertility can return to normal after stopping use. It is in phase of trials where the results were expected in 2025. So watch this space. Heidi Stewart and Charlotte, thank you. And of course, it's important to say that if you have any questions or concerns about the method of contraception you are currently using, you should always see your GP and seek medical advice before making any changes. That's it from Weekend Woman's Hour on Monday's programme. Nuala McGovern will be joined by the director Shiori Uto to talk about her film Black Box Diaries, which opens up talking points about the Me Too movement in Japan. And glossy magazines, looking back at editions from the 70s, 80s and 90s

and their fascinating insight into the way women and girls lived then. That's it from me. Have a lovely weekend. 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.