Woman's Hour - Respite care in NI, Pregnancy loss language, Sex workers and banking

Episode Date: September 24, 2024

BBC Northern Ireland's Spotlight has spoken to mothers who are struggling to cope with sons whose complex needs can lead to aggressive outbursts – often leaving themselves and other family members injured. The NHS used to supply respite care that would give those families a break of one or two nights per month. But that care has been evaporating in Northern Ireland due to a number of factors – including the loss of facilities and an increasing number of children who have gone into full-time care. Spotlight presenter Tara Mills and Julie Tipping, one of the mums featured in the documentary join Kylie Pentelow.Women working in the adult entertainment industry are being put at risk by banks not allowing them to open accounts or denying them financial services. That’s what industry representatives are saying, and why the Financial Conduct Authority recently issued new guidelines for banks around allowing sex workers to access their services. To find out more we hear from Clio Wood, a women’s health advocate and co-founder of CensHERship, Jessica Van Meir, co-founder of MintStars and Cindy Gallop, founder and CEO of MakeLoveNotPorn.The language used by healthcare professionals to describe pregnancy loss exacerbates the grief and trauma experienced by some individuals. Words such as incompetent cervix, products of conception, and empty sac to name but a few. That’s according to a study published this month by University College London. We hear from Dr Beth Malory, Lecturer in English Linguistics at UCL who led the study.Romalyn Ante is a Filipino-British poet who also works as a nurse in the NHS. She has just released her second poetry collection, Agimat, which looks at how we keep safe that which we hold most dear. Romalyn talks about what the new collection means to her and why she wanted to combine Filipino mythology and tradition with her own experiences of fighting against Covid.Presenter: Kylie Pentelow Producer: Kirsty Starkey

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.

Hello, this is Kylie Pentelow and you're listening to the Woman's Hour podcast. Hello and welcome to Woman's Hour. Today, how legal sex workers and business owners are being put at risk because they can't get a bank account. I'll be hearing from women in the industry who've been repeatedly refused. Also, suffering pregnancy loss is a harrowing time for any woman. We'll be finding out how the language used by healthcare professionals like incompetent cervix or empty sack can make their experiences so much worse. I know it's difficult to talk about

pregnancy loss, but if you feel you can, we'd like to hear your thoughts on this. Words that made you feel cared for or supported, or language that was harmful or traumatic. You can text the programme. The number is 84844. On social media, we're at BBC Women's Hour, and you can email us through the website. Or you can send us a WhatsApp message or voice note using the number 03700 100 444. Also, the Filipino nurse who's turned her work in a COVID ward into a collection of poetry. But first, BBC Northern Ireland's Spotlight has spoken to mothers who are struggling to cope with sons whose complex needs can lead to aggressive outbursts, often leaving themselves and other family members injured.

The NHS used to supply respite care that would give those families a break of one or two nights a month. But that care has been evaporating in Northern Ireland due to a number of factors, including the loss of facilities, increasing number of children who've gone into full-time care. I'm joined now by Spotlight presenter Tara Mills and Julie Tipping, one of the mums who was featured in the documentary. Now, Julie has been unable to secure overnight respite for her 11-year-old son, Theo, who has autism. Welcome to both of you. Morning. Morning.

Tara, I just want to start with you. Can you just give me a bit more information about why you wanted to give these mothers a platform? Yes, it's very interesting. I mean, at the outset, just even hearing you mention Theo's name and Julia's mum sitting beside me here, he is the most gorgeous boy. He is hilarious. He has fantastic moves. He loves music. And it has been an absolute joy to get to know Julie and Theo and the other mums that we have filmed really since the start of April. And I think we're all aware because of the COVID inquiry

that the services that used to kind of keep families together and really offer vital support for families of children with learning disabilities and autism, that kind of combination that can sometimes lead to this very difficult and challenging and distressing behaviour. And of course, it's not intentional. None of these children is trying to intentionally hurt themselves or their parents, but it comes with the conditions that they've been diagnosed with so we were aware that the services were disappearing so we thought actually we really need to take a closer look at this dig into it and we met with Julie and Claire and Carly and Laura and her featured in the film and we sat and had a conversation around a table and said

well look how do we highlight what is going on? And I think Julie could speak for herself on this, but I think they decided to do it because they were all going to do it. I don't think any one of them would have taken this really extraordinary step to allow our cameras into the house. And it was a very small team. It was John O'Kane, the filmmaker. So he was the film to produce and edit and directed it. And it was just the two of us, back and forward, and I'm sure Julie got sick of the sight of us coming. But we came to see the family, both in good times,

but very often in very distressing times. And Julie kept us informed, along with the other mums, various different pieces of video and photographs, and we were gobsmacked and I know that John and myself many many times left the houses feeling really guilty feeling that we hadn't you know could we do more obviously we can't cross the line we're there as journalists we're not there to help but that doesn't stop you being a human being and thinking oh my word that the weekends the the long days, the weeks over the summer, because obviously the children are at school,

but during the summer holidays, and we have very long summer holidays in Northern Ireland, it really did reach crisis point. Julie, can you just tell us a bit about your son, Theo? Theo is 11 and he is autistic and he has severe learning disability also ADHD and he look he's amazing we absolutely adore him I love him and he's very funny and when he is his His needs are being met. He's the happiest, funniest boy. But his condition and his wee body sometimes just gets completely overwhelmed by his environment and by, you know, maybe excess noise, different sensory issues that he has.

And when that happens to him, he really can struggle to regulate. And that just leads to him having, you know, these meltdowns that are difficult for him to control. And it's hard for us as parents. And, you know, our job is to try and teach him how to regulate himself and to co-regulate with him. But sometimes we just can't. And sometimes it's just, you know, too difficult. And that's heartbreaking as a mummy and as parents to be in that situation. And it's obviously very difficult for Theo who, you know, can't control what's happening to himself. It must be so hard for you as, you know, you obviously love him tremendously and you want to help him, but there are times when he might have caused you pain.

Yeah, that does happen. And, you know, he'll also injure himself and it's just, it can be heartbreaking. You know, it's not something you ever want to witness as a mummy and um and it can get scary and it's scary for us to see him hurt himself but you know also you know he has a sibling and you know if he is um so overwhelmed that he does lash out at us it can be sore and it can be distressing for everybody. And, yeah, we do our best to help him in that situation, but we don't always have the answers.

And, you know, honestly, we're so exhausted most of the time that it's hard to come up with the answers and be creative and come up with ways that will help him um to help you know himself to to try and overcome those difficulties tara was saying that you spoke out with with the other mothers too it must be hard to talk about this to tell other people that your son is potentially hurting you and himself yeah it wasn't an easy decision to take part um i think you know we felt like we had nowhere else to go we'd tried everything we'd pleaded and pleaded for years for help from the health and social care system. And we had gone down the legal route.

We, you know, ourselves, as parents, had read up on everything we could read up on. Neuroaffirming, trauma, you know, related advice. And we just were at a loss, you know. We just felt like nobody was listening. So this was like the only option we had left. We said that you've been unable to secure overnight respite care for Theo. What does that overnight care mean for you?

It gives us a chance to recharge and it gives us like often we don't get very much sleep Theo's sleep would be disrupted and just the daily caring activities for somebody like Theo with very high support needs so there's the physical side of the caring, but, you know, you're just always on high alert because sometimes his behaviours are quite risky and he can be a risk to himself. often get maybe when they're at school is taking up like fighting for services and going and trying to get the help. Nothing is easy, nothing is provided without absolute you know fighting all the time for the very basic needs that they have and that they're entitled to and that they have a right to um as vulnerable children it's you know it's exhausting being a mother in itself but taking on all of that as well tara what have the belfast health trust in the health ministry in northern ireland had to say about this i mean there are individual

health trusts that um that look after the children but the kind of general picture is that they the health ministry in Northern Ireland had to say about this? I mean there are individual health trusts that look after the children but the kind of general picture is that they have recognised how difficult this is for families and we have a new health minister in Northern Ireland and he has said the current situation is unsustainable so that's something that we will now be looking out for you know what happens what happens. But it's also worth, you know, mentioning another aspect. And I know this does happen to families in GB as well. But the difference is the, you know, the water between us. What is happening more and more, we don't have a residential facility for children with complex and challenging needs.

Now we don't have them for short break respite, but we don't have full time places either. So what parents and you know I'm sure Julie doesn't mind me saying this has been offered and a number of other parents have been offered what they call out of jurisdiction care. So this is where the health trusts come and say well look there isn't anywhere you're in crisis but the only place we can send your child is you know across to GB or to the Republic of Ireland but there's a kind of growing amount of concern among the parents that we've spoken to but also the wider autism community um in Northern Ireland about the distance then and and how unsuitable this is for

children and the potential harm it could cause to them because if you I mean we speak to one mother whose child is currently in one of these residential facilities that used to be used for short break respite but she's sort of 15 minutes away in the car she goes every evening she goes for big chunks at the weekend so she still has the contact with her son and the difficulty is with this increased use of out of jurisdiction care it's very costly very expensive indeed if all these families were to, you know, to take use of that. It would be a colossal amount of public money that would be being spent. But also it's harmful for both sides of the equation. You know, I can't even imagine

what it would be like to maybe only be able to get to see your child who has these complex needs once a month. I mean, that just feels very cruel. What would you feel like, Julie, if Theo is, you know, hundreds of miles away? I just can't explain to you the extra trauma that would cause two already traumatised families and children. He is so loved by us and you know his extended family and he loves his school and he loves his friends that he has there and it would just cause so much more harm. And, you know, it might be a solution for those that aren't, you know, meeting the needs locally, but it's not the right solution for us. It's not the right solution for

the children involved. And it's certainly, I think, not the right solution for the public purse. Tara, you said that you spoke to a number of mums for your documentary. Do you think this is a wider issue? Yes, I think there's no doubt about that. I mean, we know now that 44 children across Northern Ireland, if you think, you know, that maybe doesn't sound like a huge number, but in a population like Northern Ireland, 1.9 million-ish people living here, that does seem to be a very high figure.

And if you think of each of those families, they were in the main emergency placement. So it was, you know, a kind of, we have reached the absolute point of no return. We have got to have something in place. And in fact, one of the mums that we've interviewed for the film phoned the child's school, dropped him off and then came home and phoned the social worker and said, I'm not going to pick him back up. And again, you know, the reaction to that has been one of absolute horror that you would ever put a family in that position or a family would ever feel that that is the only option to get the care that their child needs. And Rita, who's in the film, you know, talks about feeling trodden into the ground

over two years of dangerous behavior and she was so concerned for her son's mental state as well that she felt that actually an emergency placement was the only answer because then at least he would be with professionals would be closer potentially to medical professionals who would you know try to look at the medication try try to find some way. But in effect, now she's in limbo as well. He's still in that residential facility. He's been there since March and she too is being offered out of jurisdiction care as the solution to the problem that she finds her family in. Julie, just finally from you, what is the key thing here that needs to change for you?

I think probably a change in culture, you know, within the organisations that are meant to be helping families like ours. I've no doubt that they're under massive pressure and they need the support and the funding. and greater understanding, I think, generally from everyone as to the challenges that are faced by families like us and by our children who are often not in the public because of their issues, because of how they present and families just trying to keep them safe. It's not always safe to take them out and about. So I think, you know, just awareness that those difficulties are there and that, you know, we can't be hidden anymore,

that we need to speak up on behalf of all the families like us who need that support, understanding, and, you know, just generally for our children's rights and their needs to be met Julie and Tara it's been lovely to speak to you, thank you so much for your time I Am Not

OK is on BBC iPlayer now and will be aired on BBC1 Northern Ireland at 10.40 tonight Now last and will be aired on BBC One Northern Ireland at 10.40 tonight. Now, last year, the adult entertainment industry was valued at just under $60 billion. That's according to researchmarkets.com. A Free Speech Coalition report states that 55% of this industry is female and 9% are non-binary.

But women sex workers and business owners are being put at risk because of the financial discrimination they face with applications for bank accounts being rejected and insurance being denied it means they're forced to use methods that leave them open to harm such as blackmail all for work that is completely legal. I'm joined now by three women who can help paint a picture of the real life impacts of this and what they say needs to change to keep women safe. Cleo Wood is a women's health advocate and co-founder of Censorship, a UK-based campaign that's aiming to end the routine censorship of women's health content online. Cindy Gallop is the founder and CEO of Make Love Not Porn, a human-curated site that promotes communication, consent and education. And Jessica Van Meer, who's the co-founder of Mint Stars,

an adult content platform that gives back autonomy to women, and a PhD candidate at the Harvard Kennedy School of Government. Welcome all of you to Woman's Hour. Good morning. Cleo, let's start with you if I can. Can you tell us a bit about what censorship is and about the report that you've recently carried out into women in the adult entertainment industry? Absolutely. And thank you for having me. So censorship is an organisation that I set up

earlier this year with my co-founder, Anna O'Sullivan. And we really exist to tackle discrimination in online treatment between men and women. And as you rightly say, we started with the onus on social media censorship of women's health and sexual well-being content, which is surprisingly rife and incredibly hypocritical. And the data that we collected there also led us to evidence of women being refused access to financial services. And that is largely within the sex education and sex worker sector. It led us to try to gather more data around these instances. And we've found that people are being refused bank accounts, insurance, and even being kicked off their payment platforms or e-commerce platforms

when they're in these, in inverted commas, divisive and vice-adjacent sectors, which is incredibly unfair. As you rightly say, these are legal industries. Sex work is legal in the UK. Of course, solicitation, running a brothel, pimping, all of those are not legal. But for me, it really paints a picture of women not being allowed autonomy over their own bodies and the way that they use them and the way that they earn money excuse me. I wonder what it actually means then for people if they can't get a bank account? Yeah and I think the impact of not being able to get a bank account is actually a

little bit more far-reaching than you might realise of course on the surface it seems inconvenient but actually the mental health ramifications are quite huge as well. I know from personal experience, I hate the bureaucracy around bank accounts, tax returns, any kind of business administration, whatever that might be. several times or be refused credit or take have your credit card taken away and have to rely on work around solutions is actually incredibly damaging in terms of the time that you lose and in terms of your mental health and your approach to yourself your self-identity because you are being told all the time you are wrong you should not, we can't have anything to do with you, because you sort of exist on the edge of what is deemed acceptable. And really, it's a woman's decision as to what she does with her body and how she earns her money. And if that is a legal way of doing it, you know,

that should be reflected in the way that banks are approaching these potential users. I just want to bring in a statement here that we've had from a spokesperson from UK Finance, that's the trade body representing the banking and finance industry. They say that banks must comply with strict legal and regulatory requirements. And while banking the proceeds of adult entertainment work is not a criminal offence, the potential related risks are very high. Individual banks will make a decision about this based on their own risk appetite, but only after extensive review and investigation. Well, let's bring in someone who's had experience of this and was actually one of the respondents in your survey, Cindy Gallop. So, Cindy, you founded Make Love Not Porn 15 years ago. Can you tell us a bit about it and why it's different?

Sure. Make Love Not Porn came about because I date younger men and therefore experienced for myself very personally, 16, 17 years ago, that when we don't talk openly and honestly about sex, porn becomes sex education by default in not a good way. So Make Love Not Porn is essentially a real-world sex video sharing platform. The way to think about us is if porn is the Hollywood blockbuster movie, Make Love Not Porn is the badly needed documentary. We're a unique window onto the funny, messy, loving sex we all have in the real world we're literally sex education through real world demonstration so how did not being able to access easily access bank accounts have an impact then on your business i have to tell you um it's been a battle to keep Make Love Not Porn operational every day for the past 15 years. I was entertained listening to the financial industry spokesperson quote because I can tell

you that whenever I applied for a bank account there was no exhaustive review investigation. I was just told flatly no the moment they found out what my business was. So for the first four years of Make Love Not Porn's existence, I was running a business and I had no access to a business bank account. And, you know, I can't talk too much about how I managed to keep going through that because I did that in ways I wasn't supposed to. but it makes life extraordinarily difficult. And while I did, after four years, find a bank that would accept us, I can tell you that all of these challenges exist right up to the present day. And I'm still encountering bias and prejudice in every aspect of my business in the financial area. So you were just just told no you weren't given any clear explanation

well well you know basically there were you know sharp intakes of breath and you know the the people i spoke to practically fainted dead away on the carpet the moment they find out you know what make life not porn is so it was literally knee-jerk um you know you have a business that has to do with sex we don't want to touch that. Let's bring in Jessica Van Mare. Jessica, you've done a lot of research on the adult entertainment industry. Can you tell me about your experience on this and also why you want to improve the rights of sex workers and businesses? Yes, I think that Cleo and Cindy put it very well. And we've experienced this ourselves at Mint Stars. So Mint Stars is a sex positive content platform built for the very purpose of protecting adult content creators from financial discrimination and censorship,

and enabling them to keep more of their earnings. Because since 2018, I had followed many adult content creators and seen the immense impact of financial discrimination on them personally. Essentially across the board, every single adult content creator has lost not one, but the majority of their payment apps. PayPal, Cash App, Venmo, all of these apps that you and I rely on every day to send money to our friends, pay someone back, pay our rent, they are systematically denied access to those platforms. And I believe that financial services should be a human right. It is unequivocally wrong that banks and payment apps are denying services to people simply based on the type of work that they do and the stigma that they have against it. And I've seen not only how this can be inconvenient, as was mentioned earlier, but how it can really threaten people's lives.

So I started out my research career doing research on human trafficking. And one of the number one ways in which sex traffickers control their victims is by controlling access to their finances. And so what can happen in cases where a sex worker loses their bank account is they may have to trust their partner or a third party to hold their money for them. And that puts them in a vulnerable situation where they can then be taken advantage of. And I personally know at least one adult content performer who was put in a very difficult situation with a partner because she had to take out a mortgage in his name because she wasn't allowed to take out a mortgage herself because of her profession. And when they got divorced, she essentially had no

line of credit or bank accounts to her name. There will, of course, though, be some people listening who don't agree with the career choice that these women have made to work in the adult entertainment industry and might think, well, you know, it's it's their fault that they can't then get a bank account. That might be a perception of some people. What would you say to them? I would say that's a very misogynistic view. Every person should have bodily autonomy and the right to do with their body what they want. And secondly, many people across the world cannot do the type of work that they ideally in their dream life would want to be doing. The majority of people in the world do labor because they need to put food on the table and they need to pay rent. And many people end up in the sex industry because it pays them more than their other job options and it offers them more flexibility. And that's really important for people like single moms who need flexibility to take care of their kids.

It's really important for disabled people who may not be able to hold down a nine to five job. So sex workers rights are human rights, they are women's rights, they are disabled people's rights. If you care about any of these social justice issues, you need to care about sex workers rights. Cleo, you found in your report also that there were some mental health issues that people were having because of this. Yeah, absolutely. I mean, I think the burden of having to justify yourself on a daily basis, simply for as Jessica so rightly put, trying to feed your family and putting food on the table is incredibly wearing. And so, you know, anxiety, depression are all things that can be side effects of this situation. In our survey, which is ongoing, and so we haven't released the full data yet,

the sex workers that we have spoken to, more than a dozen, 100% of those individuals, have been refused financial services in one way or another. And I can tell you now that it's not just them. It does go much further than this as well. And I think it's just reflective of the real lack of guidance that banks make available. Currently, it is a little bit of a black box. You know, you might get a refusal, as Cindy said, straight up. You might get, oh, it goes against our corporate values.

And when you ask for those corporate values to be made known, you are told, and this is verbatim, oh, they're not written down. So what the FCA has asked the banks to do in quite strong language is to provide clearer definition of what that reputational risk might be. Can you understand, though, that banks might be concerned about their reputation? And that there might be other customers who may judge banks on who they choose to invest in? I can totally understand that. But the issue is that it's hypocritical because they are providing those banking services for larger pornography sites or people within the sex industry who are coming at it from a male perspective. So the male gaze sexualization of women's bodies, that seems to be OK and allowed, whether that is because of scale or the patriarchy, I know which I would come down on the side of, but it is in a hypocritical situation when you have men who exist within this space

who are allowed banking, but women who are not. If I can just bring in Cindy finally, can you tell me briefly, if you can, what you actually think needs to change here? Absolutely. We need investment to build our own solutions. Every obstacle you've heard us talk about today is a huge disruptive business opportunity in itself. I am actually working right now on something I've had in the pipeline for years, which is a payments and payout solution for MakeLoveNotBorn. We're a revenue share model. And I'm talking to a number of partners because today in 2024, there are actually banks and tech platforms that are opening up to understanding what a massive financial revenue generating opportunities this is. So we are working on building our own payments payout solution,

proof testing it on MakeLoveNotBorn, and then turning it into a standalone product that we want to make available to everybody else in this context. Because as you can hear, A, that's badly needed, but B, I would say to the financial fintech industry, what an opportunity for investors and you can find a holding page for this at block3.us because i want to free all of us from the blocks of financial and fintech injustice okay we'll have to leave it there jessica cleo and cindy

thank you very much for your time now i just want to bring you some comments that we have had. We were asking for your thoughts on the language used in pregnancy loss by health care professionals. And we have had an awful lot of your comments coming in. This first one here says, I have experienced three losses in the last year. And each time I found the language used by medical professionals upsetting. Not viable, cells, empty sack. The last time was made much harder by the sonographers, nurses, midwives and doctors asking for my history. It may be normal practice to ensure women can tell medical professionals their history themselves, but it felt lazy and like they hadn't looked up my file before seeing me. Having to go over previous losses again and again whilst dealing with another one was horrible.

This one here from Pearl. Pearl says, after a miscarriage, I was told by a doctor, better luck next time. That phrase is scored into my heart forever, she says. I went on to adopt a beautiful daughter. However, the scar on my heart has not disappeared. We will shortly be speaking to the woman who has carried out a study into this, and she also has her own experiences of it too. 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.

But next, a Filipino-British poet who moved to the UK when she was a teenager. She now works as an NHS nurse specialising in young people's mental health. Her debut poetry collection was published in 2020. Now she has a second collection out called Aggie Mat. I spoke to Romalyn earlier and she told me about what it was like to leave her home at the age of just 16. So my first poetry collection is called Anti-Ematic for Homesickness. Anti-emetic, a medical term which basically means anti-sickness and I think that's really the heart of what I felt when I left my homeland back when I was 16 years old. I was always dreaming of leaving because I think as a child

from a background that wasn't really, I would say from a working class background, we were ingrained with an idea that when you grow up, you must be a nurse and then you should go abroad and make money and help your family. I thought I was always ready to go and conquer the world. But for a 16 years old, the world is such a big place. I mean, our little town was a big place for me. So there was a lot of homesickness, but there was also a lot of struggles, adapting, assimilating to a new culture, and also trying to find my own path, not only as a future nurse, but also as a person. So where did poetry come in then? I think poetry has always been ingrained in me. I grew up not surrounded by books. So we weren't really, we couldn't really afford to buy books. We couldn't really afford to buy television either. But I would say that I was rich in a culture where whenever it's brown out or black out, my grandfather would gather us all and he would tell tales, legends and myths about monsters or goddess and old gods and goddesses of the Philippines.

And I thought that I've always had that musicality, the storytelling, the narrative, the myth within me. But when I came to the UK and I started working as a carer and then eventually as a nurse, I thought that there wasn't much difference between being a nurse and being a poet. As a nurse, I learned to pay attention to the world, to what's surrounding me, to my patients, whether they are telling me that something is hurting or should I read their body language or sometimes it's the silence between us that I learned to read and I thought that's really grounded me almost into poetry. At first it was just a kind of journaling. Sometimes I would write a line or two on the back of my hand over notes and then copy it somewhere else after I finish my shift. But

eventually I learned that actually it sounded like poetry and of course when I came to the UK I was blessed with a better opportunity. I was reading at the local library, I was learning new things. I was becoming more acquaintance with new books and English poetry as well. So I guess it's more of a natural thing that happened, but it's always been there and I just didn't realise it. So tell us about your new collection then, Agimat. What's it about and what does that mean? Agimat is a Tagalog word which means talisman or amulet. I came from the clan of healers. My mother's side were all nurses, midwives, carers but my father's side, my grandparents specifically, they were all shamans and shamanists and witch doctors. So I've always had that inclination to explore what it means to heal and what it means to fight through the painful world because

it's true, our world is quite an incredibly painful world. But also Aguimat looks into two specific wars. The first war is the war that nurses fought in during the COVID-19 pandemic. And the second war is related to the Japanese occupation of the Philippines. Before my grandfather became a shaman, he was first a guerrilla. So he was fighting for our province of Batangas. And there was a legend that says that he was called Tagaliwas. Tagaliwas is basically an agimat, an amulet that is meant to deflect bullets. So apparently, a long time ago, he was fighting all these Japanese and no bullet can hit him. And at one point, he was deemed dead and he was thrown into a well, but he woke up. So there was that legend that was going around within my family.

And really, this collection attempts to bridge those two wars. But also, I was using mythology, specifically the goddess Mebuyan, who is this goddess of the underworld. She has many breasts, and she nurses the children in the underworld, so the dead souls of children. I use that symbol as my alter ego when I explore about my work as a specialist nurse within the CAM setting, within the children and adolescent mental health setting in the NHS. And even though they are inspired largely by my experiences, I would say that this is still a work that contains quite a lot of imaginative energy. It is a work that is about pain but also hope

and love and it asks questions such as how do we protect the people that mean so much to us and also what kind of talismans do we pass down to the next generation. You're going to read a poem for us, Can you tell us what we're about to hear? Yes, I'm going to read a poem called Magatama. Magatama is a ceremonial object in the Japanese tradition. It's a pendant that is quite curved and it looks like a coma. In my book, I try to explore falling in love with a man of Japanese heritage and the problem and intricacies that involved in that. But also I try to explore someone who takes care of other people's children, of young people, but also someone who wanted a child herself. So there are a few conflicting thoughts that I wanted to navigate when I was writing this poem. Magatama, this pale green jade from you, love, hangs close. Its polished curves with patches of turquoise glisten, sharp water overcoming the shore, wind incising tides. May this pendant

live on, an heirloom in waiting if luck is on our side. I wake up from a dream to a midnight thunderstorm. The magatama on my chest, a waxing moon, a coma, shared breath that fills the space at our dinner table. Beyond the waves, where selves are lost, the Itoi Gawa coast appears. It's sure a mosaic of blue and green. There, our child bright-faced plays, laughs as she picks up pebbles scattered like syllables. That's beautiful. It's so interesting because you go from mythology to then being a nurse within a Covid ward and I actually felt like some of the poems about COVID were particularly painful to read in parts. There's just part that I wanted to read here that you wrote.

The full moon outside A&E, rising above the orbs of streetlights on this ordinary October night, is surely beautiful, but I just can't feel it anymore. And just that sense of hopelessness that comes across that you that you were feeling you said you were making notes on the on the back of a handover sheet so you were kind of writing these that things down was it was it kind of cathartic to you getting these things off your chest I would would say yes, yes it was and I think all our experiences

when we write them down they become a sort of release. In my book especially the agimat or an agimat is not just a material object, it's actually power, magic within language, in what we write down, in what we say. And I think in my reality, that's how I make sense of my world as well. A lot of writing down, of speaking it, reflecting on it. What would you most like people to get from this collection? What I'm hoping for people to get from Aguimat is actually hope. I think that there can be healing on anything. I've always believed that healing is painful. I mean, and I'm speaking metaphorically and literally, when we break a bone, there'll be a lot of pain, inflammation, perhaps some analgesic that we need. But I want them to read this book and realise or perhaps rediscover that actually we can heal our own hurt and other people's hurt because ultimately we are our own talisman.

Romalyn Anter there, and that collection is out now. Now, a new study has found that the language used by healthcare professionals to describe pregnancy loss exacerbates the grief and trauma experienced by some individuals. Words such as incompetent cervix, products of conception, an empty sack, to name but a few. Dr. Beth Mallory, lecturer in English linguistics at University College London, who led the study, is here with me in the studio. Thank you very much for your time. Just a warning that we will be talking about some of the language used which some of you may find upsetting. Beth can you just start by telling me why you decided to research this? Yeah of course

thank you so much for having me. I mean this work really came out of my own experiences so I suffer from a condition called chronic histiocytic intervillositis, which is a kind of rare but really significant cause of recurrent pregnancy loss, often causing recurrent stillbirth. In my case, my losses were in the first and second trimesters. But as a linguist, I really felt that the language that was being used in the pregnancy loss kind of space was really problematic. I mean even miscarriage we use it really frequently but to me it felt really jarring and I kind of wondered if that was because I'm a linguist and I think about language in a way that maybe other people don't but what we found in this study is

actually lots of people experience miscarriage in that way. One of our participants in the study said, you know, it's synonymous with failure. The only other time we hear it is miscarriage of justice when something has, you know, gone seriously wrong in the judicial system. Why is this being used to describe how women's bodies work? And that was really my experience as well. And I think I also found it very difficult with my second trimester losses when I lost my daughters. Later on in the second trimester, I found it very difficult, the kind of dehumanizing language that was used around them.

I think in wanted pregnancies nowadays, we're encouraged from kind of the word go to conceptualize them as babies. You know, you have apps saying your baby is the size of a lemon, your baby is the size of an avocado. And then as soon as, and this was something that participants spoke to in the study as well, as soon as there's a question mark or as soon as there's an impending loss, there's a shift in the clinical language that's used. So it goes from, you know, your midwife checks you and says oh baby's doing well baby's heartbeat is strong and then as soon as there's a loss or an impending loss it's all fetus and products of conception and that that

shift and the dehumanization of something that was very much humanized and is in our culture very much humanized until that point is very jarring and is very difficult. And that's certainly something I felt myself. So I wanted to see, you know, how widespread that is and how it affects others. So who did you speak to for the research? We spoke to 339 people in total. We had focus groups with 42 individuals. 32 of those were people with lived experience of pregnancy loss in the last three years, so since 2021, because we wanted to make sure that this was language that was contemporary, what's being used at the moment and is also fresh in people's minds. And we also spoke to, in the focus groups, 10 healthcare professionals who have experience, who routinely in their day-to-day jobs support people either during pregnancy loss or with pregnancy loss after care and we also invited written contributions so that accounts for the

for the remainder of the participants and they were from both healthcare professionals and people with lived experience since 2021. So what were healthcare professionals saying about why this language will be used? Was there defence of it? Yeah, I mean, I guess there was to some degree. It wasn't so much defence because it's not an accusation. We're not intending to attack. We're intending to kind of support and trying to support clinicians to support women as best they can. But there was a lot of kind of nuance around, you know, some of the words that

people in our lived experience cohort found the most difficult were things like feticide and products of conception and pregnancy tissue. And these are things which are often kind of legally required to be on consent forms. They have to be something that these women and birthing people are exposed to in order to give their legal consent to a surgical process or a medical intervention. And what we heard from medical professionals was, well, we can't do anything about that. We can't stop that exposure. So one of the recommendations that come out of the study is if you can't avoid that exposure, frame it in a way that is helpful. So we heard from a lot of our participants that having somebody there to mediate really difficult

language, so say feticide on a consent form, feticide is the process by which the baby's heart is injected to stop it during a termination for medical reasons. And we heard from participants who said, you know, it was really hard seeing that word, but actually, you know, they talked me through it and they said, we have to call it that, but what it actually means is, you know, you're making a compassionate choice so that your baby doesn't suffer.

And that framing really helped that particular participant, whereas others said, you know, I hated foeticide. Nobody kind of framed it for me. It was very, very difficult. so what we're recommending is that if you have to um expose patients to really difficult language try and frame it in that way and that was something that we heard happens a lot more commonly at later gestations so people having these really difficult language experiences in earlier pregnancy didn't have that framing they didn't have have that kind of attempt to mediate between the difficult language that has to be there and the language the way that they want to think about their experience.

We've had a comment come in from a GP who says it's exhausting at times in consultations with patients with the upsurge of offence and trauma associated with words not everything can or should Yeah, I mean, I don't think this is about telling people how they should speak. It's about making sure that you don't undermine someone's conceptualisation of what's happened. So our recommendation arising from this report is to ask how somebody wants their pregnancy loss to be spoken about. And I don't think that needs to be exhausting. If that's just a routine way of speaking, just to say, oh, I can see that you've had a previous pregnancy experience, how would you like me to speak about that? That avoids any kind of question marks over sensitivity. The thing is that there is no one size fits all with pregnancy loss. We had participants who lost babies in the first trimester who said you know that was my baby um i i hated it when people said fetus and embryo and products of conception but equally we had people who'd experienced termination for medical reasons

at 20 weeks and who had said you know that wasn't a baby i hated it when i was delivering and the midwife said the baby is coming because there was no baby coming for me i didn't get to take a baby home i didn't want baby i wanted fetus i wanted was no baby coming for me. I didn't get to take a baby home. I didn't want baby. I wanted fetus. I wanted the and I didn't want parents. I didn't want to be conceptualized in that way. And I think it's an integral part of patient care. I don't think you can say as a clinician that an aspect of your job, an aspect of providing care is, I mean, is something that you can forego, I think, especially in this kind of very traumatic context. And it shouldn't be exhausting. This should be a toolkit for making this easier, if anything. We've had a response here from Dr. Rani Thakkar, the president

of the Royal College of Obstetricians and Gynaecologists. And in it, they say using the right language when caring for women and families that experience a miscarriage is really important. Whilst we're not prescriptive about the exact language that must be used, our clinical guidance

on pregnancy loss do emphasise the need to be sensitive when counselling women and to take their lead on whether and when they wish to talk about what has happened

and options for next steps. We've also developed information for women and families to help explain the care they will receive if they experience an early miscarriage or recurrent miscarriages. Is this, Beth, more about tone? I don't think it's about tone as much as it is about just making sure that you, so there's a lot of talking kind of talking kind of social science around um health communication now around reflective listening and making sure that you not just in in um obstetrics and gynecology but across health care make sure that you reflect what the patient is is saying

and and you use the kinds of language that they are using themselves um and it And it is about that to some degree, but it's more about making sure that you don't undermine their conceptualisation of their pregnancy. And I think that's because there are, as I said, there is no one size fits all approach to this. And because there can be, you just can't tell until you ask somebody how they want to talk about their experience. And, you know, some people might really strongly, we had one participant who really strongly rejected the word stillbirth, because she said it wasn't a birth. My older child, I had given birth to him, I had taken him home, we had a birth certificate. With her stillbirth, she didn't get a birth

certificate, she just got a death certificate. She said wasn't birth and the word birth just triggered lots of trauma for her so in that kind of context you you you can't tell without asking what somebody wants it's not about tone it's about the specific words but it's about making sure that you understand what somebody's conceptualization of their experience is so that you can use appropriate language and not create further trauma or exacerbate that trauma. I feel like sometimes I have thought that I would react in a certain way to a situation, a stressful situation, and I have reacted very differently. Isn't it part of the problem that many women just don't know how they'll feel until they're in that situation or until that word is used.

Absolutely. And I think that's why our short term recommendation is that clinicians ask and say, you know, do you know how you would like me to talk about this with you? And, you know, give women the space to say, I don't know, you know, this is all too much, I have no idea. But our long term aspiration is to create some kind of formal framework, which allows us to say to people, you know, what language do you want to use, and for that to be replicated across their notes or across their medical records. There are precedents for this kind of thing. So the Royal Berkshire NHS Foundation Trust has a document called Know Our Story in their pregnancy loss service. So they say to people, you know, we've got this medical record for your experience,

if we want to hear in your own words what's happened, and for that to be something that is kept in our records too, so we know how to talk about this with you. It's not an impossible task. It's something that we just need to scale up and make sure that people have the ability to do that. And that kind of document gives women birthing people, their families, time to process and to think, OK, so actually what language do I want to use? Because for some people, as you say, it's a knee jerk reaction. It's a reflex. It's that's my baby or that's not my baby. That's a fetus or, you know, I'm a parent or I'm not a parent.

But for other people people it might need that time and that processing and some participants actually told us that you know that would be that would be really helpful for them that time to process and that space to say oh actually okay that the language that I use here is really important but I need I need time to think about it and to talk about it with my partner. I just want to bring you this statement from the Royal College of Midwives they told us nothing can take away the devastation parents are experiencing follow the death of their baby but how they are spoken to can support them or if done poorly can add to their pain. That's why the language that midwives and other healthcare professionals use when

communicating with bereaved families matters including ensuring that bereavement care is sensitive to and respectful of diversity including cultures and beliefs. They go on to say in 2022 the RCM worked with maternity service users, including cultures and beliefs. They go on to say in 2022, the RCM worked with maternity service users, pregnancy charities and other healthcare professionals on the Rebirth Project to develop language that you were just talking about there that's more respectful, not just in bereavement care, but throughout pregnancy, labour and birth. They say we continue to urge trusts and health boards with maternity services to take this guidance on board. And we've just actually had a message from a midwife who says,

as a midwife who works extremely hard, long hours that are physically and mentally exhausting, I can honestly say we are doing our best. I have the utmost sympathy for these women who have experienced loss. We might not always get the language right, but there's never, ever any malice behind our words. We're doing our best. And a lot of people, for a lot of people, that still isn't good enough. And I think that's a really good sentiment there, isn't it, Beth? Yeah, I mean, that's kind of heartbreaking, isn't it? Because it's not about that this isn't intended to criticise at all the really hardworking clinicians.

It's about supporting them and about making sure that, you know, we had midwives and obstetricians involved in the creation of this report. And, you know, they articulated a need for guidance. Often, I think they expect that guidance to be use this word, don't use this word. But we can't give that guidance because not there isn't a one size fits all approach, as I've kept saying. But if we are able to implement this kind of framework, which says, you know, ask, make sure that you go into that room and say, or, you know, in the future, if there's just something on the front of someone's notes that says this is what they need from you, that shouldn't add a burden, that should take away a burden, a burden of concern. Dr. Beth Mallory will have to leave it there. Thank you very much.

Join me for tomorrow's programme. That's all for today's Woman's Hour. Join us again next time. I'm Helena Bonham Carter, and for BBC Radio 4, this is History's Secret Heroes, a new series of rarely heard tales from World War II. None of them knew that she'd lived this double life.

They had no idea that she was Britain's top female codebreaker. We'll hear of daring risk takers. What she was offering to do was to ski in over the high Carpathian mountains in minus 40 degrees. Of course it was dangerous, but danger was his friend. Helping people was his blood. Subscribe to History's Secret Heroes 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 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.