Woman's Hour - Clea and Joanna from The Home Edit, Dame Carolyn Fairbairn, Menopause report

Episode Date: July 28, 2022

Friends and business partners Clea Shearer and Joanna Teplin have become stars of pandemic feel-good TV, with their Netflix show Get Organised with The Home Edit. They go into someone’s home – be it a Hollywood celebrity or a stressed family of five - and transform a cluttered space into something beautiful and functional. The emphasis is firmly on giving busy women back some time and headspace through better organisation of their homes. Clea and Joanna join Emma to give some pro tips and explain how they got the business off the ground with a little help from Hollywood actor and exec Reese Witherspoon.Women with learning disabilities die on average 26 years younger than the general population. This shocking figure is contained in a new report which investigates health inequalities for people with learning disabilities, and the resulting premature and, often, entirely avoidable deaths. In her first interview since taking up the role of Chair of Trustees at the Learning Disability charity Mencap, the former Director General of the CBI Dame Carolyn Fairbairn tells Emma about why the life, and death, of her sister Diana Fairbairn, who had learning disabilities and cerebral palsy, and who died last December, has inspired her new campaigning role to improve support for people with learning disabilities.As the Women and Equalities Committee in Parliament releases its final report into the overlooked impacts of the menopause, Emma speaks to the Chair of that Committee, Conservative MP Caroline Nokes, about the actions she wants the government to now take up. These include consulting on making menopause a protected characteristic under the Equality Act – meaning employers would have to make reasonable adjustments for menopausal women in the workplace.Last month, we asked listeners about the matriarchs in their lives, the redoubtable women whose stories deserve to be told. Today, listener Kate from Cambridge tells her Grandmother ‘Babushka’s story.

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

BBC Sounds. Music, radio, podcasts. Hello, I'm Emma Barnett and welcome to Woman's Hour from BBC Radio 4. In the debate about who becomes our next Prime Minister, one policy area has yet to rear its head, or you may be feeling quite a few haven't. But perhaps today's report by a cross-party group of MPs may change that. Menopause and the workplace. MPs on the Women and Equalities Committee are arguing that women going through the menopause should be given greater rights

and protection where they work. They want menopause to become a protected characteristic like pregnancy because they say a lack of support in the UK is pushing women out of work and they want more from employers and better legal rights. How do you feel about this? You may have gone through the menopause. You may be in it at the moment, in the trenches, if it's affecting you in the way that we'll hear a little bit about in this report.

You may be thinking about it in the future. In a moment, I'll be talking to Caroline Noakes, the chair of the Women and Equalities Committee. But I know from previous discussions that there is a variety of opinion on this about whether you would feel comfortable talking to those that you work with about any such symptoms, whether it is the conversation

you've ever had with your boss before, or you feel like you would be able to, or is this a push perhaps, I should say the report covers other areas as well, but this particular area, do you think is a push in the wrong arena? It should actually be about better provision with doctors, doctors the medicine side of things and less so about work because if you fix that perhaps things would be easier in the workplace i don't know you tell me

that's how this works you can text me here at women's on 84844 text will be charged your standard message rate on social media we're at bbc women Hour, or email me through the Women's Hour website. Also on today's programme, the two women Reese Witherspoon cannot get enough of. Queens of the home edit on Netflix. You may have got into this during lockdown, millions did. Clea Shearer and Joanna Teplin. I've been talking to them.

Would you, if you could, pay someone to organise your house? They've got a lot of systems. And they tell me that there is no part of their homes that they are in charge of that are in a mess. Do I believe them? I think I do. One of them is very upset about the state of her daughter's drawers, though. We'll also be hearing the story of one amazing matriarch, courtesy of you, one of our listeners' grandmothers, we've heard the story of on email, and now we're going to talk about it on air. And I'll be joined by the former boss of the CBI, the Confederation of British Industry, Dame Carolyn Fairburn, on her latest role and why it's a highly personal mission. All that to come. But a new report released today says employers' lack

of support for menopausal symptoms is pushing, quote, highly skilled and experienced women out of work with knock-on effects on the gender pay gap, pension gap and the number of women in senior leadership positions. The cross-party House of Commons Women and Equalities Committee is calling on the government to amend the Equality Act to introduce menopause as a protected characteristic, as with pregnancy or maternity, meaning employers would have a duty to provide reasonable adjustments for menopausal employees. The MPs also urged the government to remove dual prescription charges for oestrogen and progesterone as part of hormone replacement therapy, HRT, nationwide, replacing it with a single charge for all women. And it comes, just to give you a context,

as the number of employment tribunals citing menopause has risen 44% year on year according to court records. Caroline Noakes, Chair of the Women and Equalities Committee that's produced this report, good morning. Morning Emma. The implications of introducing menopause as a protected characteristic, what are they and how do you think this could make a difference to some women's lives? Well, what we know at the moment is that women are finding it very difficult to bring cases to a tribunal. And in many cases are using disability discrimination as their go-to piece of legislation. Now, look, we all recognise that the menopause is not a disability. And we're saying two things about the Equality Act. The first one being being make it possible for people to bring cases using two protected characteristics. So in this case, age and gender.

And that covers off the fact that this happens to women and it happens to usually, and I'm always very quick to emphasise it can happen much younger, but it usually happens to women in their late 40s and early 50s. So that would be an immediate change the government could bring. And secondly, consult on making a protected characteristic. And I'm sure that there are legal pros and cons. We heard some of them in the committee. But we just felt that the overwhelming evidence was that there were good grounds to make menopause a standalone protected characteristic. And that would help women who wanted to go to tribunal now look I recognise actually going to tribunal is a failure in the first place isn't it if we had decent workplace menopause policies in place implemented being used then you wouldn't need

to go to tribunal but that sadly isn't the reality so look I think there are a lot of steps that the government could take and we're encouraging them to do so but you you know, or we seem to know, with this present government, of course, you're from the party of government, it's constantly changing at the moment, who's actually in charge. But what we do know is from one of the business ministers that changes to the current legislation are not supported. Your suggestion isn't supported. Scully said, Paul Scully said,

it may well provide an unhelpful distraction for employers from what they should actually be doing, which is complying with the existing law and familiarising themselves with the guidance, i.e. it already all exists. It does exist, but it's proved impossible for women to use. And although the number of tribunal cases have gone up 44% year on year, actually, they're really struggling to bring cases and they're using disability discrimination legislation now look my message to paul who i think is a great guy and you know has been a good minister is please think again on this let's and i think he he now has uh a new minister jane hunt has taken over that brief from him does that make a difference having a woman in charge i do hope so um and and think again and look at the evidence you don't seem to to think so. You're not supporting Liz's trust. You're going for Rishi Sunak, but we'll get to that.

Let me, it's very interesting from your perspective. Judy has messaged in, and I think this is a much bigger message, and you even saw it in your own survey, which is some of the uncomfortableness that women have with singling out menopause in this way. So Judy says, my problem with this whole issue around menopause is that it will stigmatise older women even more than they are at present and make them even more unemployable than they are considered to be now. What do you say to that, Caroline Oakes? have policies in place that support older women. There are 4.5 million older women in employment in the UK at the moment, between the ages of 50 and 64. So they're absolutely the most experienced members of the workforce, and we want to make sure that they're supported. I think the taboo

question and whether older women will be, it will be a barrier to employment is one that we have to address. And actually, what I'm seeing from employers is a willingness to sign up to things like the Menopause Workplace Pledge. They're really gripping this issue. I've been inundated with employers asking some really straightforward questions. First and foremost, how can we help? Because they don't want to lose talent. And every employer, whether male or female, has a sister, a mother, a relative, a friend, a colleague that they actually want to be able to keep working. It's just when I looked at the survey within your own report, less than a third of respondents who were experiencing menopause told anyone at work.

And the main reasons given for this were privacy followed by concern over people's reactions. I suppose it's what's got to come first to allow women to feel comfortable to do that, because they perhaps just want to be private. They don't want their menopause to be company policy. And, you know, that's an absolute choice in itself. And I think what we're saying is, please support those who want support. Make sure that it's not a taboo so that people don't feel awkward about talking about it if they want to but don't force them to talk about it and I think we all recognize that different women will experience the menopause differently and some will sail through with no symptoms at all and others will have a whole range of symptoms that as we know from research up to 900,000 have felt obliged

to leave work altogether so that we're saying we Which we shouldn't, you know, we should pause on that to say that's not an insignificant number. It's a huge number. And that's bad for their personal, financial, emotional, physical well-being. And it's bad for the economy. And it's bad for business. And that's, I think, the single message that I have is that this all comes together in a perfect storm whereby not supporting menopausal women in the workplace is costing

them money, it's costing their company money, and it's costing the government money. So let's find some practical solutions that might actually work and make this better. A message from Tracy says, I think this is important. Many older women do experience these problems and employers and customers are rarely sympathetic. An anonymous message there. Just to try and clarify something with this anonymous message, I don't know if it's from a man or a woman. Why are you so intent on making issues for women from stuff we've coped with for generations? Menopause for most is not a problem.

If you're unwell, take some time off as if you had a migraine, damaged leg, whatever. Women's Hour is increasingly trying to turn women into a special breed. We need to stand up alongside decent men and prove we are capable and resilient. Just to clarify something, this is not Women's Hour's report. This is a cross-party group of MPs. We have the chair of that particular group here. And this is the findings of that report. And some of what you say there is directly contradicted by some of the findings of the report if you say that most women are absolutely fine with this because your data shows something different. Most women are not and some

will be and it's absolutely right that we recognise that there are a range of symptoms some will be mild some will have none at all and some women will literally not be able to work for years menopausal and perimenopausal symptoms can go on for a decade so this isn't about taking the odd day off as if you had a migraine. It's about saying, look, we need to put in place some practical steps that are going to make working women's lives easier. That's all I want to do. I don't seek to set them apart as some sort of special case. I want to be able to see women flourish in the workplace and older women as well. And I think that's really important that we shouldn't underestimate the impact that this can have in undermining confidence, provoking anxiety,

both menopausal symptoms, and stopping women from playing a full role in the workplace. And last year, Standard Chartered did some research that showed as many as 50% of women had not taken on additional responsibilities at work because of their menopausal symptoms. Now, look, that's a promotion gone. And I don't want to see that for any woman. A message here. I agree that this could make things harder for women at work. Not all women have problems, which we've talked about with menopause anyway.

The important thing is to make HRT more readily available. Now, if my memory serves me correctly, Caroline notes, the last time you were on, you were having some issue with your own provision or rather being in receipt of the drugs that you needed. You were having to trade or swap with someone and a fellow MP. Absolutely. Carolyn Harris, who is a fellow member of my committee and an absolute legend and co-chair of the menopause task force. And I were trading HRT because she had a couple of bottles spare. So she lent me one. And when I managed to get my prescription filled, I paid her back with a bottle of HRT. Now look, you shouldn't be forced to do that. And I know you were not advocating for people to do that. But your party of government having

some issues with supplies at the moment. I know it's not just the government, the world's having supply issues, but we could also debate more at length when we have more time why that is. An HRT SAR has been hired, a so-called SAR, if you like, somebody to coordinate this, to improve it. I have made some overtures to try and invite that individual onto the programme, not yet successfully. We have had a Minister for Health last week with the Women's Health Strategy. Has it got any better? Well, I think it's still patchy. And that's the problem, isn't it? We need consistency of supply across the whole country. And I think that Maddy McTernan as the HRT SAR should come on and talk about it. But also, we need to hear from people like Dame Lesley Regan, across the whole country. And I think that Maddy McTernan as the HRT czar

should come on and talk about it. But also we need to hear from people like Dame Leslie Regan, who's recently appointed Women's Health Ambassador. She was on the programme last week. She's brilliant, absolutely brilliant. But we do sort of need to get this sorted, don't we? Yeah, absolutely. We were talking about the provision.

So have you got your stuff sorted now? Well, if you don't mind me asking. No, no, we're three months on from that. So I've suddenly looked at my supply and thought, time to get my repeat prescription and see what happens. So I am anxiously awaiting to see what the supplies are going to be like in Hampshire because at the time there wasn't a single pharmacy in Southampton that had any of the oestrogen gel that I was using.

That you were using with that particular supplier. A message here, I had to retire sick from teaching age 45. I didn't know how I was going through the menopause. I didn't know I was rather. I was instead diagnosed with anxiety, depression and later fibromyalgia. It's only in retrospect as my period stopped when I was 46 that I realised it was menopause. I've never had menopause treated as it was never considered a factor. My life was destroyed, losing my work, home, as I could no longer afford the mortgage, and friends as I had to move away to a home in a cheaper area. So I'm sure you will have heard stories, very difficult stories like that. Thank you for sharing. I'm so sorry that that happened. But, you know, in contrast to some of those getting in touch this morning, some of the women in particular saying they don't feel comfortable about this. Your point, I suppose, is to some of those other stories that you will have been hearing.

There's a message here. Menopause happens to women, Caroline, adult females, not someone identifying as a woman. Women's rights very depend on the recognition in law and life as a sex class, not a gender. I wanted to ask you today, having thought about the realities of biological sex for this report and the negative impact menopause can have on some biological women's lives, has that made you reflect on your support for self-ID and what some people think, as you're hearing in that message, could be wider ramifications of that in the fields of medicine and employment law? Well, there are some wider issues because there will be some men, some people, men with gender recognition certificates who will go through the menopause as well. And it's important that we recognise that. I also was incredibly touched by the number of people

in the trans community who reached out to me, who of course are using oestrogen gel, and saying to me, look, you know, I've got a spare bottle, do you want one of those? So look, I think it's really important that we reflect that menopause happens predominantly to biological women, of course it does, but there will also be some men that go through it that is acknowledged in the report i just wanted to understand if it had changed any of your thinking around your support for self-id it sounds like it has not no it hasn't which is the last report this committee put out absolutely is and i think it's really important that we don't allow women's rights to be undermined but at the same time we have to respect trans people's rights. You made an off the cuff remark a few moments ago,

at the beginning of our interview, that perhaps a woman now in this position in the business team with Paul Scully might make a difference. It is striking as the chair of the Women and Equalities Committee, you're not going for the Women and Equalities Secretary of State as your choice for next Prime Minister, you're going for the man, you're had where Rishi has demonstrated a really broad understanding of some of the issues that women are facing. Do you think he was mansplaining when he cut across her 17 times, I believe it was, versus her 10 in that debate? Shall I tell you what I really hate in all political debates is when we all feel obliged

to interrupt each other. I'm one of those people that when I take part in some sort of panel show on the radio, I'm really bad at doing that because I just think it is clunky and awkward and I hate doing it. So look, I think- He loved it indeed. His ratio was much higher. And I think, unfortunately,

the debates that we've seen during the entire leadership contest, sort of going back from when there were many more candidates than there are currently, didn't help raise the tone, didn't shed shed much light although there was an awful lot of heat and I think we can do better as a party I wanted to see a leadership contest that showcased all of the talents that we have and the brilliant experience and expertise of some of the candidates and I just feel a little bit left cold by the entire experience. Well those accusations if you

like of mansplaining came from the Trust camp. It's, again, if I need to clarify, it's not a view of women's out here because we don't have the views. We're trying to reflect and debate them. But also, I should say, the Sunak camp, as it were, said he was just being tough and trying to get his views across.

Of course, we've got a long summer ahead, folks, on this. So we'll be hearing more from the Trust side and, of course, the Sunak side with all that to come. we'll talk again about it caroline notes though thank you very much for coming on to talk about your latest report chair of the women and equalities committee and just on that uh particular report a government spokesperson gave it a statement this morning which said we have put women's health at the top of the agenda by publishing a women's health strategy for england appointing the first ever women's health ambassador, Dame Leslie Regan, and taking action to increase supply and reduce the cost of hormone replacement therapy.

The UK-wide menopause taskforce is seeking to end the taboos surrounding the menopause and considering the role workplace policies can play in supporting menopausal women. And the government's health and wellbeing fund is helping expand and develop projects which support women experiencing the menopause to remain in the workplace now let's move to something else which we move to tidying and organizing friends and business partners clear shira and joanna teplin

have become stars of the pandemic feel good television series on netflix get organized with the home edit the two series are based on their organising company, which started in Nashville and has now spread to eight other US cities. The TV show, if you've watched it, you'll know, but if you haven't, follows a tried and tested formula, pretty satisfying, I have to say. They go into someone's home, be it a Hollywood celebrity or a stressed family of five, and transform a cluttered space into something beautiful and functional. That's key, using their finely honed systems and a shed load of matching containers. The actor and executive producer, Reese Witherspoon, liked what they did so much she actually bought their company.

And I spoke to Clea and Joanna on a video call and asked Clea if she'd always been this organised herself. The games that I would play with myself or with other people when I was a kid always revolved around setting a game up, but never actually playing it. Like I would, you know, I would I would set up an animal veterinary clinic with all the supplies, but never actually be the vet. I was always into just the sorting and the categories and arrangement and the organizing aspect of it. Even in college, I lived in New York City, so I was short on space. So I had to get pretty creative and I would hang up all my handbags on the wall like art. I would just find different ways to creatively store all my items. And that's just the way I've always been. And I think that the

older I got, the more people did comment and think it quite weird, all of my, my methods. But they were perplexed by it. And I just thought it was so normal. So I think, you know, eventually, if somebody tells you, you're good at something after a while, you should believe them. So that's kind of how I, how I found my niche. Your background in that. And you said niche, a lot of Americans say niche. So I was excited to hear that. Does that mean I'm British? You're in, you're in, that's all it takes. Let me, let me just ask about when this began for you. Was it always a way of life? I very much emulated what Clea is describing. I loved organizing my room. I had all these little tiny collections that I'd always move around and shift shelves and make sure that they were arranged just as I saw them fit in my brain. And then I took a different turn in high school and

college and was a total slob, just an absolute mess. And then I came back around to the other side of my coin when I was really in my late twenties. And especially when I was pregnant with my son, I became obsessed with organizing my home and making sure that everything had an exact space. And I think it was like more of a control thing when I was pregnant. Do you think just before we get to the method and perhaps explaining, you know, your business, do you think that it stops you or has stopped you over the years, enjoying your home, enjoying hosting and actually making a mess that you then have to clean up? Clear? Not at all. I love having people over and I pride myself in the fact that, you know, my systems are really,

really simple. And even if there's a mess in the meantime, I can get it right back to where it needs to be in, you know, 15 minutes. So it hasn't stopped me at all. I think it just proves that being organized makes living in your home that much easier. Okay. I agree with that. I mean, we both have two kids separately, obviously. And it's not that they don't make a mess. They are kids. And it's not that our husbands, you know, don't make a mess too. It's just that we know the systems are there. So it's so easy to put back in place. So it never stresses us out to see the mess because we know exactly how it's going to get put back. What's stressful is when there's no system. Are you always the one to put it back, Joanna though? Cause that's what a stressful is when there's no system are you always the one to put it back joanna

though because that's what a lot of our maybe female listeners might feel which is that they have their own version of a system maybe it's not that sophisticated but they certainly know where everything goes but they feel they're the only ones as women retracing objects well you know what we always say it's either you have to decide if it's a you problem or a we problem. And you want to make the system so simple that anybody can put it back so that it's a we problem. It's not just about you. I get it. I was wondering, I mean, Claire, you've got some golden rules, haven't you? rules. But I would say the top of the heap is if you want to maintain an organized home for the long term, you should never have a space that's more than 80% full. You want to leave that 20% of room very similar to how one is supposed to eat. You don't want to eat until you're 100% full because that's really uncomfortable. If you're maxed out, it doesn't leave you any room

for dessert. It doesn't leave you any room for feeling very good in your body or in your home. And if you get something new comes in the door, whether it's in your closet, your pantry, your kitchen, whatever it may be, there is some room for it. And you're not in a dire straight situation where you have to then remove something to allow something new to come in. I mean, I love what you said about food because some people listening to thinking, well, I do like to eat until I'm incredibly full and then I stuff a dessert on top of it. But you're right. I don't feel good. Joanna, have you ever gone into someone's home, famous or otherwise?

And, you know, if you want to name names, that's cool with me because I'm a journalist and just thought, I really think this is just disgusting. I do not want to even put my left hand in here. So there are places are not typically dirty. If you, if that's what you're kind of alluding to, if something's very messy, it then can be underneath. It's not how to clean. That's true. But we welcome a mess. I mean, when we get into a house and we see a total mess, it actually excites us because we have so many ways to improve the space. So it sort of invigorates us. I know that sounds so

crazy, but it's just the truth. Were you guys friends first? What came first, the business or the friendship? The business. Really? Yeah. It was a blind date. A friend set us up for lunch and we sat down we had never met before and we just we both had kind of ambitions for starting a home organizing business in Nashville but four hours into our lunch we sat up and we were business partners so we went into business the same day we met. Wow that was a good blind date. You sound like some, some would say the whole work wife thing and the partnership thing. It sounds like it was a good way to start for you because sometimes people do start businesses as friends and that's not always the easiest either. It's true. Joanna famously said in an interview once, um, what do

you think your secret is to your success? And Joanna said, well, we've just never been friends. And I was like, what are you talking about? I thought we were friends, but what she meant was we, we didn't start this business as friends. We started as business partners and we became probably, you know, closer than friends now, but it served us because we didn't come in with all that baggage. You know, we came in to make a smart business. And then it turned out that I think the business has been successful because of the friendship, which is just a miraculous, beautiful thing in my mind. Come on, Johnny, you're trying to make it back up to clear now, having said you'd never been friends. I hear what you're doing. Oh, yeah, I owe her for the rest of my life. I wanted to just

touch on Reese Witherspoon, who explained to our listeners what she means to you, the relationship there, and of course, her role in the television side as well as this. Reese is our producing partner. Hello Sunshine's produced our show for the last few years. And Reese, again, did find us on Instagram. And she just thought that we were a couple of funny, talented ladies on Instagram. And we couldn't believe it. Obviously, you know, when Reese Witherspoon wants to talk to you, you certainly say yes. So we ended up working together on the TV show. But then in November, we began conversations for an actual acquisition. And in February of Hello Sunshine formally acquired the home edit. So Reese is more than just a producing partner. She's our partner partner in business. And we're incredibly lucky to be inextricably

tied to her. Well, it sounds like an amazing relationship that, as you say, came from her seeing your work on Instagram. And also she's spoken a lot about her mission to have women at the heart of audiences and at the heart of content that we see. And I just wonder how important you think it is having more high profile women like her, you know, being these players in entertainment, if you like, deciding what we see, editing what we see in some ways. Yes, we are so aligned, obviously, from a female storytelling point of view, and from a female business owner point of view, you know, I think that in order to really forge a way for women to be taken seriously in all

different aspects of whether it be media, business in general, all of it, you know, we've had to do it ourselves. And I think that Reese and Hello Sunshine, they feel the same way. You know, it's in if you want to have a part in Hollywood, for instance, sometimes you have to produce that part yourself. You know, we take our mission very seriously, all of us and try and lean into our roles as women whenever possible. You know, we don't just own a company. We, we take it really seriously. We're, we're a female founded company. So I think that it's a part of our origin story, but it's a part of, you know, what we do every day and what we bring to the table. Claire, just if I can to stay with you for a moment, I know that you've had a pretty tough

year in a different respect. You discovered you had breast cancer and I know you're having treatment at the moment. You're 40, I believe. Is that right? How are you doing and how has that been trying to process that? I am in the midst of chemo right now. So I have a few more months left and then I move into radiation. And I would say mentally I'm doing pretty well. Some days are definitely harder than other days. I've ended up in the ER. I've needed a surprise blood transfusion. There are definitely certain hiccups that come along with treatment, but I'm so fortunate. I have the world's best team that surrounds me at work. I have the most supportive people and friends in my life.

I have the best doctors and medical care. I mean, honestly, I consider myself the luckiest person in the world. I wish I didn't have cancer, but put that aside, you know, I don't think that there's anyone luckier. So I am feeling relatively strong. I'm just plugging away and doing what I know how to do, which is keep my life organized and compartmentalized. And I'm checking off every day, every week, every treatment, and I hope to be cancer-free by Christmas. That would be amazing. I sincerely hope the same for you. I really do. You know, John, I imagine it's great to have clear positivity there, but it must have been also,

you know, worrying for you to see your great friend and colleague go through this, your partner. Yeah. It's awful to see anyone that you love have to deal with this. And especially Clea, who's just always such a, I mean, there's no one like her. So to see her being tested in this way, but I would say tested and not, not run over, you know, Clea is, I, I don't, there are not enough words to even describe how I feel about her strength and positivity and fortitude to get through this in the way that she has. I'm just amazed, honestly, utterly amazed by her every single day. And she's so inspiring. I just, I'm inspired. Well, you two do a lot of inspiring of your own. You make a lot of people happy.

My only other question was, Joanna, do you have a dirty corner of your house that you want to confess to or is everything sorted? No, everything is very, very organized. Again, not that it doesn't get messy. It absolutely gets messy. But it's important to feel like I've created a space where you can share because that's what I do. So clear. Anything you want to confess? Every single corner of my house, everything as a home, everything is in its organized place. But my daughter's drawers are just wild. I don't know how she gets dressed every day. There's no way to keep them folded. She just tears through her drawers. It's embarrassing. How old is she? 11. Oh, right. I love it. A wild draw. It's bad. And if she wants to live like a maniac,

then that is her choice. Like a maniac with a wild draw. I was talking there to Clea Shearer and Joanna Teplin, the founders of The Home Edit. I've seen not many takers or certainly you maybe just have been enjoying that and get in touch afterwards. 84844 is the number you need. But Leslie says, I know my house is old fashioned, lots of brown wooden furniture and books on every wall and a radio in most rooms. Well, I like that, Leslie. I don't care. There you go. You might not. But for those who do, you've been watching this programme, or perhaps you will now, and maybe you've been thinking about those systems. Now, a new report is out this month, which contains a shocking figure.

In fact, it contains many shocking things. But let me give you this one. Women with learning disabilities have a life expectancy that is 26 years less than women in the general population. That figure is part of an annual report investigating premature and avoidable deaths amongst people with learning disabilities. learning disability charity Mencap has a new chair of trustees, Dame Carolyn Fairburn, who's on a personal mission inspired by her sister, who had learning disabilities and cerebral palsy, who died at the end of last year, to change this reality. The businesswoman, and you may know her as the former Director General of the CBI, the Confederation of British Industry, she started her new role at the charity this week. And I'll be talking to her in just a moment in her first interview about the job. And it will be the first time she's spoken publicly about the loss of her sister. But first, though, I'm joined by our reporter, Carolyn Atkinson, who can tell us a bit more about that report and those statistics that I mentioned.

Carolyn. Well, they're from something which was known as the Learning Disabilities Mortality Review, and it's just been renamed the Learning from Life and Death Review and that pretty much sums up its aim. So it investigates the deaths of people with learning disabilities and so far they've investigated more than 10,000 since this whole process began about six years ago. It looks at the health inequalities that people can often experience

so things like not having investigations carried out or diagnoses made, and so therefore not getting good timely treatment. So it overall aims to improve the care that people get so that these health inequalities can be reduced so that overall premature and avoidable deaths can also be reduced. And what do they find what they found happening at the moment? I mean, I mentioned there's many shocking things in there, but it is really startling, particularly about women, isn't it? It is. That figure with women with learning disabilities is dying on average 26 years younger than women in the general population. It's incredibly disturbing. So it's a much shorter life, more than a quarter of a century shorter. And the fact is, that is actually an improvement on how things were about four years ago, when then the difference was 29 years shorter. And the fact is, that is actually an improvement on how things were about four years ago, when then the difference was 29 years shorter. So that goes on to explain another

shocking revelation in these findings, which shows that overall, people with a learning disability have much shorter life expectancy than the general public. So one in 10 people, 10% of the general population die before they're 65. But that figure for people with learning disabilities soars to six in 10, 60% die before they're 65 on average. And half of all those deaths of people with a learning disability are deemed to be avoidable. So again, much higher than the general population, that figure figures only a quarter of deaths are seen as avoidable. And so sadly, the most common cause of death, as we know, no surprise probably, last year was COVID. But when it came to excess deaths, so that means more than you'd usually expect.

Again, people with learning disabilities, there were double the number of excess deaths compared with the general population. There was also a lot of anger about reports of blanket use of do not resuscitate notices, DNRs, for people with learning disabilities, wasn't there? And that was, you just mentioned COVID, but during the heights of the COVID waves. Was that reflected in this report? It was because that very much made headlines. DNR notices or the official thing, do not attempt cardiopulmonary resuscitation, made headline news.

The government actually ordered an urgent review because it was hearing too many stories where seemingly just having a condition or indeed a learning disability did result in someone getting a DNR notice as opposed to maybe the way it should be done assessing for example someone's frailty or their medical chances of having a successful resuscitation. According to this research, there's still a long way to go. 64% of people with learning disabilities who died in 2021 had a do not resuscitate notice in place at the time of their death. But the investigators who were at King's College London, they led on this research.

They found that only 60% of those notices were correctly followed. Is there a government response? Yep, the Department of Health and Social Care told us they know that people with a learning disability do face barriers getting good, correct health care. They say they're working on it. They say also there are multiple reasons for reduced life expectancy, including specific health conditions that affect people with learning disabilities. They say the government's bringing in mandatory staff training

and they also say that everyone with a learning disability over the age of 14 can get an annual health check. So a lot of this really is about communication, it's about making sure people with learning disabilities, their families, their advocates, are all aware of what's going on and what should be going on. It doesn't always feel like that. I've been speaking to a woman called Vanessa.

She has a learning disability and she has been involved in this learning disability death review. She and her husband were both hospitalised with COVID and very sadly, her husband died. But Vanessa says people with learning disabilities need to be better listened to and she is training professionals to do so. I'm proud to be better listened to, and she is training professionals to do so.

I'm proud to be a learning disabled adult, and I like fighting for different corners to make a change in society and improve people's health and lives, because that's what I do a lot of. I'm classed as experts by experience, by all what I've known in learning disabled people. And I like trying to make a big change to everything. I try and make it powerful enough so people do listen and to show them why it's important that we do have voices for people who haven't got their voice. I do a piece of work for learning disabled people so what we do

we train up newbie nurses to learn to work with learning disabled people because there's not enough nurses to go and work with learning disabled people in hospitals like if you've got appointments and or you're in a ward and you need someone to come and help you communicate, there's not enough nurses to do that on the wards. It's like we've got a communication book and it's usually at the nurse's main desk and I say to them, then why aren't you going to get the communication book before that learning disabled person because in that communication book it's got a lot of good information for the hospitals but nine times out of ten I didn't see it being used while I was in hospital because I had Covid and so did my husband last year.

I never saw it being used. They should make learning disabled people priority, get proper care properly, because there wouldn't be premature deaths happening in LD if we had the proper support. Vanessa, talking to our reporter, Carolyn Atkinson. Joining me now in the studio, as I mentioned, is someone whose sister's death is very sadly included in those statistics. Dame Carolyn Fairbairn. Many of you may remember her as the former director general of the CBI, the Confederation of British Industry. In fact, we heard a lot from her on the airwaves during Covid, but not about this. She starts in her new job this week as the chair of trustees at the learning disability charity Mencap. And Dame Carolyn, I should just start by saying how sorry I am for you and your family's loss.

Thank you. That means a great deal. And I know that we're going to share this online as well. You've given us a picture of your sister, your late sister, Diana, who died at the end of last year. And just before we get into everything else, just tell us a bit about her. Well, I have brought a picture because I think it's sometimes so difficult to actually imagine somebody when you're talking like this. She was somebody who absolutely lit up a room when she came in.

She had profound learning disabilities. She couldn't speak. She was in a wheelchair, really profoundly disabled from birth. But she had a smile that lit up a room. She absolutely loved life. Everyone who knew her adored her. She smiled all the time. She went swimming every week. She wanted to join everything in. I think there were four of us, four children in our family. And she was the most extrovert by far. And actually during COVID, Emma, she loved being with the family. My mother couldn't visit her, but she used to read her murder mysteries down the phone. And we'd hear her laughing at the other end. She was an extraordinary vivacious person who loved life.

And a big part of your family, you know, the fact she was living away from the family still, but still a big part. Oh, we were incredibly fortunate that she was able to live in a wonderful residential home just near our family home. And she used to come every week to our house. She had a wonderful carer called Bridget, who was with her for 15 years. She was a huge part, a huge part of our lives. She died at the end of last year in what you have described as a violent death on her own. What are you able to say about what happened? So it was a devastating tragedy.

She went in hospital in the middle of October with what turned out to be a gallbladder infection from which she recovered. She caught COVID in hospital. That was not connected with her death. She recovered from that as well, Emma. But then she was going to be discharged in time for Christmas, and we were getting ready for that.

We were incredibly excited the week before Christmas. She had to have a minor operation just before she came home to help her with her feeding, but we weren't anticipating any problems. But on the Tuesday before Christmas, there was a minor issue with a spike in her temperature, but again, we weren't worried. But on the evening before she was supposed to come home, we got a call to say she had died. And what we discovered, unfortunately, through the post-mortem is that she had died of asphyxia on her own in a side room of the hospital. She had choked on last days of her life.

And the fact that she died on her own in such a dreadful way, I'm afraid, absolutely haunts us. And we do feel that, you know, we do feel that her death was avoidable. Yes, which I know. I mean, I should say, and I'll share this, that we have a statement from the hospital, not naming the hospital. If I may share this, it just says, we continue to send our deepest sympathies to Dame Carolyn Fairburn and her family at this difficult time.

As well as sending our sympathies, we'd like to thank her for raising her concerns about the care of her late sister, Diana, that she received. We take all concerns raised about the patient care provided at our trust very seriously and investigate all issues raised to us. Following Dame Carolyn's complaint to the trust, we conducted a comprehensive review of Diana Fairburn's care whilst with us. We're confident the review did not find any significant concerns with the care provided to Diana. And the details

of the findings were included within our letter to Dame Carolyn. We would welcome the opportunity to meet with you to discuss the conclusion of our review and provide any further assistance in relation to this complaint. I know that you as a family will also be processing that, but you'll also be processing the grief, the loss. There's a lot there. But you have chosen to take this particular role at this time in your life. You're a woman who's been incredibly busy. I think I've interviewed you in at least three different guises. I know you actually gave up one of your other commercial roles to take this on.

Why does this matter so much to you? It matters so much because what I have realised, what we as a family have realised, is that the tragedy that happened to us and to Diana is happening almost on a daily basis in our hospitals. And I think that is what the leader numbers show, that there are problems in our hospitals around unconscious bias, around lack of understanding of the needs of people with learning disabilities coming into hospitals. And I really felt when I discovered the tragedy in our own lives, that I wanted to try and prevent it happening to other families. And that these things are preventable. There are some very, very concrete issues here around the use of do not resuscitate orders.

My sister had a do not resuscitate order placed on her the day she arrived in hospital, despite not having our consent for that. I was very surprised about that. She was placed in a room on her own because she made noise, despite the fact that she couldn't communicate. She could not press the red button and say, despite the fact that she couldn't communicate. She could not press the red button and say, I'm in pain, I need help. And she was put on a three-hourly observation round. So these were issues that we felt very keenly. And I feel that we can really make a difference to them. And when I began to do my research and find out who are the organisations that are really campaigning to overcome some of these inequalities, I came across Mencap again and again and again.

And they produced a report actually exactly 10 years ago called Death by Indifference. And I read it very shortly after my sister's death. And I thought, this is happening to so many families. And we are not solving this. And we are not being fair to some of our most vulnerable people in our society so when the opportunity came to to take this role at Mencap I felt this is absolutely what I want to do it's what I can commit myself to to do and as you said this is my first week and I'm I'm delighted to be here and commit myself to this.

I mean, you mentioned a few areas there, of course, in the intervening 10 years, certain things have changed. The government have accepted the Care Quality Commission's suggestions about, for instance, do not resuscitate. There's now an oversight body to review how they are used. There's also in terms of, I know you're also passionate about staff training. And there's the Oliver McGowan mandatory training is now laid down in law, also happening. You could argue it's not happening fast enough or how it should be happening. I mean, you're first week in the job.

So there's a lot to look at what's said is going to be done and seeing how it's actually implemented. But I mean, is it the first time you've taken a role based in quite such a personal uh reason rooted in that way i wonder how that is for you so it it is i mean i i was fortunate enough to be a trustee of marie curie um there has been cancer in my family so that meant uh something a lot to me as well but nothing quite like this um uh i there is i do think it is a measure of our society how we treat the most vulnerable people

and I have an awful feeling that the pressures on the NHS and the challenges we're facing there is some research showing that actually the use of do not resuscitate is increasing the use of clinical frailty scales to be applied to people with learning disability that is growing despite advice from NICE against that. So I just have a sense that unless we get really concerted action here, bringing together all the people who can make a difference,

the health professionals, organisations like Mencap, people with learning disabilities themselves, because they can change perception. I am so struck by the fact that we all have unconscious bias, that we don't look beyond the disability. We see the disability first and foremost. And actually, perhaps our first emotion is pity rather than this person actually loves life and has a wonderful quality of life, as was the case with my sister. And so it's deep rooted. And there has been progress, Emma, and I think it is

wonderful to see that. But there is so much more to do. And so it is the first time I've taken on something which I feel quite as passionate about on personal grounds. But I want to use what I have learned, because it's been so personal, to try and bring people together to make change for so many other families. And also, you know, for those who perhaps at times think Mencap itself could do things better. They look at the charity world sometimes and they don't necessarily think it's doing everything it could or could be better. I'm sure some of your lessons and learnings, not that business always gets it right, but some of your experience in the business world may also come to bear in that. Is that what you're hoping? Well, I hope so.

I'm cautious because I think probably the business world has a lot to learn from the charity world as well. But, you know, there are some things I'm very struck by from the world of business. I think the power of collaboration. I think what we've learned is that businesses working with other businesses and with government can really make a difference. You know, the vaccine was a classic example of that. And I think I would like to see how we can bring different parts of society together. I don't think medical professionals, nurses and doctors, they are trying to do the best they can.

These are systems problems. And so I think that sort of business lesson about bringing people together, and again with government. There's also something about measuring things. One of the questions I will have is the Oliver McGowan training, absolutely fantastic, and it's involving people with learning disabilities, and it's about all the things we've talked about, quality of life and making allowances for people

so that they heard Vanessa's story, very powerful. But let's measure how many doctors and nurses are being trained. I think it's eight and a half thousand so far. That's fantastic. But there are one and a half million people. So what gets measured gets done. Exactly. Measurement and accountability. Measurement and accountability, I think, is something the business world does well. How do you want to remember Diana? How should we remember her? I was actually in touch with Bridget this morning. Her carers said that they miss her laugh. They miss her joyful approach to life.

They miss her spirit. And I will always remember her like that. She always wanted to be part of things. She was just a wonderful character. Her life was cut a little short, but it was a wonderful life nonetheless. And we miss her every day. So thank you for talking about your family as well today. Dame Carolyn Fairburn, new in the role at the Chair of Trustees, I should say, for Mencap, the largest learning disability charity. Now, some time ago, talking about family and women in families, I asked you about matriarchs, those women in your lives who left a major impact on you and those who crossed their paths. Many amazing responses came in and we tried to air as many as we can. And today I'm joined by a listener from Cambridge, Kate, who got in touch to talk

about, as she describes, her force of nature, late Russian Jewish grandmother, Esfera, who they called Babushka or Baba for short. Growing up, as she did in the early 1900s, living in the shadow of Russian pogroms, anti-Jewish riots her grandma fled Russia became a scientist who was taught by Albert Einstein before eventually settling in England my goodness what an introduction Kate welcome to the program hi thanks Emma well she said yes I can hear you and loud and clear she certainly sounds like someone I think all of us would like to meet. How was she in person? She was larger than life. My early memories, she always had a very strong Russian accent and it was overlaid with the English that she'd learnt.

She used to call me her little Polyanovsky. She kept her short hair all through her life she didn't really care about her look she never had false teeth so she had sort of one toothpick in her mouth she one of my earliest memories is uh sitting in the bathroom while she had a bath and she must have been in her 60s i I suppose, or 70s, 60s, because I was about six and she was teaching me my times tables. Of course. Not bothered at all.

Why not? And she was somebody, she had a completely different, so she was very emotional. So if she talked about something that she cared about she cried which was quite alien to me growing up in um england and um i think that gave me license to be emotional without it being a big thing you didn't do anything she cried and then she stopped crying and then she went on talking. Well, I mean, also with emotion, you know, wrongly, we can sometimes equate it with weakness.

She sounds anything but weak. She sounds incredibly strong and also incredibly well educated. You know, just thinking about when she was around and when her youth was and how interrupted her youth sounds. Yes. Yes. And she, she, I mean, I read about, I read her first book. She published four books and I read the first one, which she published in 1932. She'd come to this country when she was 25. didn't speak any English at all and my grandfather helped her in writing it and it was about her experiences of the Russian Revolution and getting out and how

she because there there was a civil war that followed the Russian Revolution and the Jews were caught up in the attacks when the armies took her town. And so a civil defence force was formed and she cut her hair off and learnt to use a gun and joined the civil defence force so that she could patrol the streets. And to me, as a teenager, reading about a teenager, I was a tomboy. I wanted to have short hair and have adventures. And here she was doing these amazing things. And also, I'm sorry to get to this next stage quite quickly, but if I can, the teaching of science to her by Albert Einstein was also part of an incredible youth. It was.

She had been about to go to university when the revolution happened and obviously she couldn't go. And then when she got her family to Palestine, she wanted to go to university. She went to Berlin to study physics and he was her tutor. It's pretty good timing in some ways.

There's some awful timing about to happen as well. Well, yes, because then when she finished her degree and wanted to go further, he said she shouldn't stay in Germany because it was the 20s and it was already turning bad. And so he wrote her a letter of introduction to Rutherford at the Cavendish in Cambridge. And that's how she came to be here and how she came to meet my grandfather. That's incredible.

What a way to meet the man you're going to marry. Yes. Inadvertently via Albert Einstein. Well, his father helped to fund Jewish students who were coming here to study. And that's how she met my grandfather. Your grandfather, yes. Yeah. And I suppose all of that, then, you know, you get to meet her as a grandmother, you know, in a completely, I suppose, different way. Did that come out, you know, her science, her fighting, all these different teenager, so I interviewed her about the book. I'd read the book at that point, so she talked about it. She talked about her life, so we all knew what had happened in her life. when he died, a sort of memorial piece which was published.

I think she was from a generation of academics who had very broad interests. So she was a scientist, but then she gave up science to become a writer. And that also made me feel that I could, I didn't have to stay in one box. And I think it made me braver in my choices of what I did in my life because I've always done things that were not traditionally things that women did. And that made me feel if she could do it, I could do it.

What an amazing impact and legacy. What an amazing woman. Thank you so much for bringing her to us. She sounds incredible. I think this matriarch question is just going to run and run because we've got some amazing women out there and we want to hear their stories. Kate, it's really lovely to talk to you as well. And to you. Thanks very much. Thank you so much. That's all for today's Woman's Hour. Thank you so much for your time. Join us again for the next one. 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's 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.