Transcript: Living while dying

This is a transcript of Living While Dying as first broadcast on 28 June 2019 and presented by Kate Monaghan and Simon Minty

KATE - Hello, and welcome to BBC Ouch. I'm Kate Monaghan.

SIMON - And I'm Simon Minty.

KATE - BBC tech correspondent, Rory Cellan-Jones, only had to whisper that he had Parkinson's disease for us to label him 'disabled' and adopt him as one of our own. That's okay, right?

SIMON - Lucy Watts MBE, has outlived every prognosis and is very much alive and making her mark at 25. She's managing a life limiting condition and a plethora of medical needs. Hello.

LUCY - Hi, nice to be here.

SIMON - She's also brought in her lovely assistance dog, Molly, who's in the studio, and plus we have mental health expert Mel Halacre, who is back in the room. Hi there, Mel.

MEL - Hi, again.

KATE - Hello, Molly. Can you make her bark?

LUCY - Yes, I can.

KATE - Go on, bark.

LUCY - Molly, can you speak? Speak, go on. [Molly barks] Good girl.

KATE - Ah, amazing! You are of course listening to BBC Ouch with Simon Minty and Kate Monaghan. It's a disability thing, you know. Here us through your smart speaker by saying, "Play Ouch disability talk from the BBC".

SIMON - BBC journo, Rory Cellan-Jones, is down the line from the conference where he's reporting on the latest technology. But he's been in the news himself recently after he revealed he has the neurological condition Parkinson's. His diagnosis came about after a neurologist who was watching one of Rory's live TV reports noticed his hand was shaking. The neurologist wrote to the BBC with his concerns, and that email found its way to Rory. So, did that message come as a shock, or did you suspect there was something unusual going on, Rory?

RORY - Well, it came sort of last autumn when I was already beginning to think something was up, I'd been dragging my foot for quite a while. My wife feels slightly embarrassed about this now, but she used to walk behind me going, "Foot, foot, you're not walking properly!". We gradually got to grips with the idea that not everything was right, and every now and then I noticed a slight tremor. Actually, by the time that neurologist wrote in it really was a wake-up call, but I had already arranged to see my GP and was waiting, three months as it turned out, for an appointment with the consultant. So, I had my pretty strong suspicions that something was up.

KATE - When they said the word, "Parkinson's" to you, is that where your mind had already gone, or was that quite a shock?

RORY - Well, she said, after putting me through a bunch of tests, which my GP had also done, you know tapping your knee, stretching your arms, making you open and close your fist. The consultant said, "Well you do show the symptoms of Parkinsonism". It didn't come as a shock because I'd had a look online and it did seem to all add up to that kind of diagnosis.

SIMON - I like the 'ism', that's quite a new one. Also interesting the fact that sometimes it is family or friends or people around us that spot something and give us the nudge. I mean we joked at the top of the show, we were slapping the disabled label on you, Rory. How do you feel about that word 'disabled' being used in relation to you? I mean could you see yourself that way?

RORY - It's interesting, isn't it, I mean you don't see yourself as disabled and it is an unfamiliar label. I honestly haven't really thought about that. But interestingly, I got a contact from a government department the other day saying would I like to be part of some campaign called 'Disability Confident' aimed at employers.

KATE - Wow, they do not waste their time!

RORY - They don't waste their time, do they? I thought, 'Why not?'. But yeah, it's...

SIMON - Well I suppose the question are you confident around it, or do you feel you're still...? Because sometimes it's a learning process, isn't it, it's a kind of an adjustment.

RORY - It's very much a learning process. It's something that creeps up on you. I mean I am getting to the age where lots of us have various aches and pains that you think are just part of the ageing process, so it takes a little more rethinking to understand that it's actually in my case something a bit more serious than that. But I suppose I am disabled.

KATE - I love how quickly the government are happy to label you with that term when they want something out of you. But when we're trying to get our benefits they spend their whole... they take forever and are always trying to tell us we're not.

RORY - Yeah. To be fair, these were good folks running an interesting campaign aimed at employers. The idea of it is good, I think there are some stats on how many people with disabilities lose jobs and so on. I'd also recounted on air, and they may have heard this, this tale a Parkinson's nurse had told me, about somebody who was diagnosed at 33 and was in a really high pressure job, very high tempo job, and was fired because they weren't quite performing at capacity. And they'd never told anybody, they'd never told their employer what their condition was. So I can understand that it is important to raise awareness there.

SIMON - In my day job I speak with companies and they say, "How do we recruit more people?", and I say, "Well, don't mind about recruit, you keep the ones you've got because you've probably got them". How do you feel about the future and work and your career and so on?

RORY - Well, I think I'm lucky to be with a big employer like the BBC which shows every signs of treating me right. I've had a little bit of help in terms of they've come to look at my desk set-up, because one of the things I'm finding more difficult is typing. But generally I'm feeling reasonably confident. I did send a joke email around colleagues when I sort of told close colleagues about my diagnosis, and said I won't be carrying the tripod any longer, because the tripod's this piece of really heavy annoying kit...

KATE - Yeah, quite right too.

RORY - ... that reporters over the years get used to lugging around and grumbling at the cameraman about carrying it. So, yeah, I'm not so keen on doing that anymore. But at the moment, apart from getting maybe a little tired, I think I'm doing okay.

KATE - I feel like you were almost... I don't know if you were planning it, but you were almost forced to come out by people mentioning on Twitter that they noticed that you had a tremor, and then that day you said well maybe now's the right time. Do you feel that was a good thing for you? Was it a relief to be able to tell people? Or did you want to do it more on your own terms?

RORY - No. I'd been thinking about it. I'd been thinking about coming... In fact, I dropped a hint interestingly a couple of days' before, because I was taking part in a research project at the Charing Cross Hospital where they're trying to look at genetic links of Parkinson's, and it basically was great, I went along and had a two hour chat with somebody, which was the longest I'd talked about Parkinson's. As I left the hospital I took a picture of the poster which was sort of publicising the research project, and just put that up on Twitter, and nobody quite got it.

So, a couple of days later I had a chat with a very good producer I work with, we were on the train after I'd done this live broadcast, and she just said to me, "Have you thought about going public?", and I had, I'd very much wanted to and wanted to find the right moment. So it was the right moment, and the reaction was very positive, so that was good.

SIMON - This is quite a serious question then, go where you want with it. What's your biggest fear? What are you very nervous about?

RORY - Well, I suppose the biggest fear of anyone with this kind of condition is whether it will affect one mentally. I had to do a memory test as part of this research project and I found that quite intimidating. Luckily I just about got it. I've got a terrible memory anyway, I have over the years. So that is I suppose my biggest fear.

And I'm cautious about: a) researching too deeply, or looking too much at Doctor Google; and b) looking too far in the future. Because I was diagnosed with a melanoma some years ago, a malignant melanoma behind my eye, Googled that and was immediately terrified. Then found myself in the health system with brilliant doctors at Moorfields Hospital, and things were nothing like as bad as Doctor Google would have made them seem. So I'm cautious about looking too far into the future and doing the right kind of research about what the condition involves.

KATE - What does it feel like for you just on a day-to-day basis?

RORY - It feels just like I'm not as fit as I used to be, that I'm dragging myself from home to the tube and then from the tube to the office. There were times until recently where I'd notice it at first and then I'd forget it, but now I'm feeling more and more I'm dragging my foot, it's a bigger effort walking than it used to be. But I've got to stress, I have got pretty mild symptoms at the moment, I'm not having the quite dramatic stuff that some people have. I've got a very elderly relative who has the condition so I know how debilitating it can be, but it's not that for me yet.

KATE - Well, when you need a bit of help you can come to us, we can give you all the top tips on getting all the support you need. You can get a taxi to work through Access to Work. There are many things that are available to you which we can give you the inside scoop on.

RORY - Excellent.

SIMON - I also think sometimes what we do is we carry on trying to live a certain life when it gets more difficult, and that's where you kind of go, 'Okay, there are things that are set up to help'. Mel, you're a therapist and sometimes with a progressive there are milestones and little moments. How does one stay steady mentally when disability goalposts kind of keep changing?

MEL - I think it varies. We're all individuals and we all have different backgrounds, so we all have different ways of being resilient, if anybody likes to use that word, where we're brought up in a way to overcome challenges. What messages do we get about bodies changing and things like that. So all of that plays a part, our early experiences.

But very much having a space to talk about your concerns. What I often hear is that the person who's acquiring a disability, for want of a better word, sometimes feels silenced, or there might be an initial period where people want to know and ask lots of questions. And I guess similar to what people say when somebody dies, that then they hit this kind of silence and people feel awkward and don't know what else to ask, especially if the condition's not improving.

SIMON - I'm coming back to Rory because we haven't got you for that long. I remember when my dad had a stroke and he said the biggest issue was everybody else. I mean how has it been for you, Rory, telling...? Your wife was already spotting things but now feels a bit guilty, but other people, friends and family, how have they been?

RORY - Friends and family have been absolutely fine. I think people don't know much about the condition. I didn't know much about it at all. One thing that kind of makes me laugh but also I find slightly irritating, people's instant reaction, and it's meant to be helpful is, "There's amazing things they can do with Parkinson's these days, wonderful treatments". Actually my doctor was pretty frank with me, "It is not a curable condition and the most we can do is alleviate the symptoms".

KATE - But you have been going to some trials?

RORY - A good friend of mine is the BBC's Health Editor actually.

KATE - Handy!

RORY - Yeah. Said to me, "Great to get on trials", and he's absolutely right. I found there were no actual medical trials that were suitable for me, no different treatments to take at the moment. But the one trial I'm on is basically a research trial where I don't think I'm going to have to do much more, they did a two hour interview with me on every intimate aspect of my health and health history and that of my family, and that was it. But what was good about that as I've said is that it was the longest that I've been able to talk about Parkinson's to a health professional. That strikes me as the benefit of trials, you get the attention. Because the consultant's great and everything, but you always walk out and think half an hour later, 'Why didn't I ask that?', or, 'Should we have gone deeper into that?'.

SIMON - I think that having that space to talk about it, I always think as well as the medical people other people that have got the condition, that's going to be a whole world where you learn so much more. I'm wondering, I'm a big tech fan, I watch you a lot, when you're looking at tech now do you look at it slightly differently? Do you think, 'Oh, would that be useful for me?', or do you ever think about the Parkinson's in relation to technology?

RORY - Well, in the past I've done quite a few stories about inclusive technology, but here's the really ironic thing, and funnily enough I've just met the guy concerned with this experiment at this conference I'm at. Last autumn I did a story about the use of artificial intelligence to diagnose Parkinson's.

SIMON - Wow!

RORY - Now this was before I'd been diagnosed. It involved a Chinese company called Tencent and a London company called Medopad doing a collaboration. What they were doing was filming somebody opening and closing their hands as fast as possible, which is one of the ways you sort of detect the condition. Obviously accumulating vast amounts of data, then training a machine to say that is Parkinson's, or that's stage X Parkinson's, and that it's not. So I filmed that, and it was at a time when I was worried about it but hadn't been diagnosed, and I did think, 'Maybe they should film me". But I didn't act on it at that stage.

SIMON - Goodness me.

RORY - Yeah. But yeah, companies are coming to me. There's a company called I think GyroGlove, which has shown off some innovative technology to help people stop the shakes. There's a lot of work going on in this field, so I'm hoping to explore it.

KATE - Yeah, well you'll be the one to follow, won't you, for sure.

SIMON - And the cliché, are you following Michael J Fox on Twitter yet?

RORY - Do you know, one of my great friends in technology, a guy called Stuart Miles called me up, and he's a big Michael J Fox fan, and he sent me a link to the biography. I'm most of the way through his autobiography, something I would never have bought in the old days, and it is fascinating.

SIMON - I can recommend a podcast as well, Clear and Vivid, with Alan Alda from MASH days, and Michael J Fox.

RORY - Oh yeah.

SIMON - It's a lovely listen. It's a really good listen with Michael J Fox talking about where he's at now.

RORY - Right.

KATE - Oh, and Ouch is a pretty good place to listen for all your disability needs.

SIMON - Well yes as well, listen to our show.

RORY - Yeah, obviously. And of course the essential weekly podcast is the Tech Tent on the BBC World Service.

KATE - Ah yes, of course.

RORY - Yeah, that's one nobody should be without.

SIMON - I feel we're kind of losing the plot. [Laughter] It's so lovely speaking to you, Rory. I hope we maybe can get you back later on and see how you're going. Thank you so much for being on the show.

RORY - Well thank you, that was great.

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KATE - Lucy Watts was just 22 when she received an MBE for services to young people with disabilities. By then she'd already outlived numerous life expectancy markers given to her by her doctors. She's 25 now, has lived through 12 bouts of live threatening sepsis. 12! And has all sorts of complex medical stuff going on, which I am sure we'll get into. Lucy is also one of the most highly respected voices in the UK and internationally on palliative care, patient choice, and the transition from child to adult services. Blimey, that's a lot.

LUCY - It is, I like to keep myself... you know lots of work, keep varied, keep busy. I often say that the more my disability takes over my body the more my brain kind of picks up. It's a bit like with Stephen Hawking, the more disabled he became the more his brain almost developed. I swear it's the same for me.

KATE - Tell us about your history then, what happened to you. You were okay until you were 14?

LUCY - I had health problems and my mum used to think there was something wrong when I was a little baby, so I had a lot of treatments and interventions, but never a diagnosis. And me being me I just kind of got on with it. Didn't complain when I was in pain, didn't complain when I hurt myself, just dealt with it as you do as a child. But obviously growing up in pain, if you've never known any different you don't know that pain's not normal. And I had a lot of gastro problems and problems with my joints, weak muscles, but I lived a normal life. Then by 14 it progressed to such a stage that I was now seriously ill and physically disabled completely, and I was needing 24/7 care.

In the years since then, so it's 11 years since then, it's been quite a journey. I found out when I was 17 that I was life limited, but they skirted around that conversation for quite a long time, so I should have known a couple of years beforehand. My first prognosis was, "You won't live 'til 18". Then it was, "You won't live 'til 23". And obviously now I'm 25. I have a lot of complex needs, so I'm hooked up to drips almost 24/7, I have various bags and tubes and interventions. Obviously I use a wheelchair, have an assistance dog, and I have 24/7 care at home. But I get to live an amazing life, and it's not despite my disability, it's because of it.

KATE - Did you ever get an actual diagnosis for what is causing the problems?

LUCY - This is the interesting bit. So I was diagnosed at 15 with a condition called Ehlers-Danlos syndrome, so the connective tissue disorder.

SIMON - Oh yeah. Kate has this. Yeah, yeah, yeah.

LUCY - And then last year I had a muscle biopsy and I found out in the November that it's almost certainly a mitochondrial disease.

KATE - What does mitochondrial disease mean?

LUCY - In your cells you have like power packs that make all your energy for your body. My power packs don't work. My body doesn't produce enough energy to run its cells, so then its cells become defective and they die. So obviously I've got respiratory problems, I've got complete gastro failure, bladder failure, pancreas problems, so many problems all round my body, but you know it's just life, you get on with it.

KATE - But how did they give you a kind of, "You won't live until you're 18", if they didn't really know what was going on with you?

LUCY - We knew it was degenerative because it was obviously progressing rapidly, but it was due to the complications. I was so poorly, and no matter what we did I just seemed to be on this massive downward slide, and they basically said to me, "We do not know how long we can keep you alive. We do not know how long we can keep your body going". Obviously when I was 17 I'd had a heart attack, I was under seven stone, and I'm six foot one so I was really tall, and my gut was failing, and even though I was now put on total parenteral nutrition, so intravenous nutrition, they did not think I was going to live. "But prognosis is our best guess, and we've got no benchmark to go by, so it is at best a guess". Obviously when you've got cancer people can generally by their other patients tell what the future holds, but with me there is no rulebook.

KATE - Who told you that your life was limited and they don't think that they can keep you going forever?

LUCY - Two of my consultants have had as we call it 'the talk' with me over the years, and they've been really good. My first conversation my consultant kind of spat it out while he was talking to me that I wasn't going to live a long life. But I just think maybe he had some anxiety over telling us or something, he built it up in his head and obviously it all just came out. I had a second conversation with one of my other consultants and he was so... he sat on the bed next to me and he talked to me on a level and he answered all our questions, and I still look back on those as positive conversations.

But I've also got palliative care. The hospice came onboard when I was 17 and I've had a lot of palliative care, and they have been fantastic with my consultants. Because a lot of consultants feel if they can't give you a cure that they're failing you. But palliative care have been able to tell the NHS consultants, "Focusing on Lucy's quality of life is still a success. Just because you can't cure her doesn't mean you can't care for her".

SIMON - Bedside manner is a really important thing, we know that. We will bring Mel in, in a moment. Being 14/15 that's a tough time anyway. What was your reaction?

LUCY - I think I'd been struggling more and more. All through my childhood I'd had interventions. So I think my life didn't suddenly stop, it's slowly kind of faded away, so my friends started to drop away. At 14 I was becoming more dependent as they became more independent, and that divide between me and my peers just grew and grew and grew. For me I suppose that first year I was grieving, I was grieving the life I'd lost. I wanted to be a doctor, my whole life was geared up for that. I even had my retirement planned out when I was 11. [Laughter] So I was a big planner. But I just really wanted my life back and I knew that wasn't going to happen, so I had to grieve for that. I had someone say to my mum once, "You can't grieve if it's not a bereavement", but actually I did lose a life. I didn't lose my life but I lost that life.

SIMON - You're nodding.

KATE - Did somebody help you with that?

LUCY - I did have some psychological input but not very much. I suppose the most time I've had psychological input which has been very good has been through the hospice. But obviously when we talk through the counselling all this kind of 14 year old/15 year old stuff comes up, because actually even now 11 years on it still affects me.

SIMON - This hospice is for children. There's 54 of them in the UK?

LUCY - Yeah.

SIMON - That's a tough place to be. Or is it not, is it quite a happy place to be?

LUCY - It's a very happy place. I'm supported by a young adult hospice, so they use the children's hospice model for 16 to 40 year olds. I've been to two different young adult hospices and they really are about living. People think hospice they think death, and actually hospice is about living, it's about living well until the end and having the best quality of life. I do feel children and young adult hospices get it so right because they focus on the education, the social, the emotional. They focus on the whole thing, and it's built around the individual.

The other thing for me about my prognosis is, with the sepsis it's actually 14 times now. I had two more bouts last year of sepsis so it's now 14 times I've survived it.

KATE - Wow!

LUCY - My consultants regularly have this conversation, "It's likely an infection's going to end your life". And I've got an advanced care plan so I want to die at home, and all the support is written down in that plan. But the chances are I'm going to be in ITU, ventilated with multiple organ failure, I'm not going to get the death I want, and that's really hard. But also you kind of think when you've got a life limiting illness you get this slow progression, you get to say goodbye to everyone and have all these lovely conversations and it's all romantic like they show it on the films, and actually it's not going to be like that, it's probably going to be a very sudden unexpected end to my life. That's probably harder for me than actually thinking about dying is thinking about dying in a cold, noisy, clinical hospital ward. Or my mum being faced with the decision to switch my ventilator off.

KATE - Mel, disabled people I guess we have to think about death more than others.

MEL - I think that disability in a way gives you an opportunity to think about death more. So I think a lot of temporarily able bodied people, as we like to call them, avoid the topic through any means they can. I guess disability can bring that to our front. Like you're saying, Simon, if you've grown up being disabled then you might have a lot of disabled friends and you might lose them along the way. Certainly it's something my younger clients often talk about.

Another common theme is thinking about when parents become ill. I can hear Lucy talking, you have a really strong relationship with your mum, and often that's a very difficult thing to talk about if your mum or dad has a terminal illness themselves, or is just getting older. It's almost like that back-up plan might not be there forever. We all have different relationships with our mum and dads and sometimes it can be good and sometimes it can be fraught, but at the end of the day it's familiarity and you're used to that support. As we know care is patchy, and it's something I talk about a lot, and I have personal experience, we've had to get rid of our own PA yesterday because there wasn't that rapport there.

KATE - That's for your husband?

MEL - For my husband, yeah. So if you are in a fortunate position to have friends or family, that can be your Plan B. I think then it makes thinking about death and all that conversation easier. If you're dependent on healthcare professionals then it can be a very scary topic.

SIMON - Lucy mentioned it, and Rory perhaps is going through it, that sense of grieving without death, so there's a transition in your life.

MEL - Yeah. And also what Lucy says that people say, "You can't be grieving, you're still here". I see it in different ways. When I've worked with someone who's had a brain injury and I worked with the partner thereof, they say there's no rituals for that. People are saying, "Well your partner didn't die, they're still here", but yet they're saying to me, "Yeah, but it's a totally different new person and they might have a different cognitive age now", and we don't really know what to do with that.

And likewise for the person whose body is changing it's like, "You should be grateful you're alive. You should be working harder to get better". We have this kind of myth in Western society that you should be always getting better. Like Rory was saying, wasn't he, "There's fantastic research out there, and look at this cure, and look at that". I'm sure you can all relate to friends and family, or maybe more acquaintances saying, "Newspaper articles about this latest treatment". People do that to my husband as well. Then you go and you look at it, and actually all the study is something totally different to what the headline is, and it's 20 years away. But I think it helps people have control over death to say, "Yeah, keep fighting, keep trying". But then sometimes you just feel so fatigued and exhausted you don't want to keep trying.

SIMON - Well also the catch is then I hear people go, "I'm not going to give in, and I'm not going to use a wheelchair, I'm not going to use that bit of kit". And that really saddens me because I think you're making your life really hard. That's not giving in, that's just being smart.

MEL - Yeah, there's kind of a balance, isn't there. I think we all have a natural resistance to want to keep fighting which is healthy, but it can like you say Simon sometimes knock over into actually sometimes when people make that transition from like a walking stick to a wheelchair, they come back and say, "I wish I'd done this 15 years ago, I've been living in so much pain". But the stigma of the wheelchair was more than the stigma of the walking stick. I remember my husband talks about his long walk of freedom.

SIMON - That's a Mandela type... [Laughter]

MEL - So he went from a manual wheelchair and now he's got power assisted wheels. He went out for this long walk in the country lanes, and he said it was amazing to have that sense of being able to go where he wants to now and being able to push up steeper ramps and things.

LUCY - It's that independence of movement, isn't it. Non-disabled people don't think about sitting up out of a chair or walking to the fridge to get a drink, but actually for us it's a big barrier. But if you've got a wheelchair you can get around your house and it is freedom. To me my wheelchair represents my freedom.

SIMON - And there's a real balance. 14 bouts of sepsis. I know one person who had it once and everyone was worried that person was going to die. So the fact that you've been through that 14 times I mean that's pretty full on.

MEL - Yeah. I mean they've caught it early, but that doesn't mean that I haven't been in ITU on a massive amount of medication, on IV antibiotics. I'm very fortunate Molly, my assistance dog, although she wasn't trained to do it will alert me three hours before my temperature spikes. I get that very late in my presentation of an infection. So she'll give us three hours' warning when I'm getting poorly. Of course I can drive up to London, go to A&E to my specialist hospital and get treatment.

KATE - How does she know and what does she do?

LUCY - There must be some kind of scent that I give off when this is happening.

SIMON - Wow!

LUCY - She worked out that: a) when this smell or whatever came, that I was getting poorly, and she licks me, she licks my hands and my arms. But you know when a dog licks you it's very gentle, she is like in a trance, you can't stop her. If I take my hand away she'll follow it, if I bury it under a blanket she'll dig it out. Then she'll run between my mum and my nurse, or me and my nurse. It's like she wants them to come in.

SIMON - It's like Lassie.

LUCY - Yes. Yeah.

KATE - But she's not like a specialist dog.

LUCY - Obviously she's a disability assistance dog, so she does the physical tasks that she was trained to do with help from Dog A.I.D. But that medical alert is something she's picked herself. But I think that's because I've had her since she was a puppy, and I've had sepsis so many times and so many infections, in a way she's just picked it up. But funnily enough, I've got a colleague on one on my boards that I sit on that's got diabetes and she'll alert her to her diabetes as well.

KATE - Wow! What else does she do?

LUCY - She can pick up dropped items. She can undress me. She can load and unload the washing machine, which everyone loves.

SIMON - What do you mean undress you?

LUCY - She'll put my sleeves of my jacket, take my jacket off, pull it out from behind me.

SIMON - When you came in the studio I thought she was playing tug of war.

LUCY - No.

SIMON - Oh, that was quite helpful, she wasn't just trying to... [Laughs]

LUCY - Yeah, she was taking my coat off. She takes my socks off and everything like that. I still need help to get dressed, she's not that good. And she can't cook, she can't clean and she can't drive. [Laughter]

MEL - Damn it.

LUCY - I know. But she does so much. But it's not just the physical, it's the confidence they give you. People talk to you when you're out.

SIMON - I sense from your back story Molly coming into your life was one of the real opening up...

LUCY - It was. I'd been ill five years before I got Molly, and I'd been mostly bed bound, I was trying to work with physio and I was trying to... But I didn't have that motivation. I was being told I was going to die. I had no quality of life. My symptoms weren't being managed. Then Molly came into my life and it was like I worked hard with physio, we got my treatment more under control and my conditions more under control. Then I was able to start sitting up in my wheelchair and going out with her. But it was feeling part of society again. I wasn't overlooked, and I wasn't that girl in the corner that everyone stared at. I was the girl with the amazing dog that everyone wanted to say hello to.

SIMON - Plus companionship, there's someone right beside you all the time.

LUCY - And she doesn't see a disabled person, she just sees her mum.

MEL - Yeah.

KATE - Mel was talking earlier about the importance of relationships with our parents and that parents can become carers. Your mum was your carer for a long time.

LUCY - When I first became poorly she was working full-time and caring for me single-handedly.

KATE - Whoa!

LUCY - By 2009 I was on tube feeds and obviously I couldn't be left because obviously I could aspirate and things like that, so I had carers while she was at work. Then I had various different packages. Then in 2014 I got a personal health budget and I was able to employ my mum to do some of my IVs, because they wouldn't give me nurses so the only other person to do it was mum. I employed her to do that. That worked out quite well. It meant she could give up work, she could look after me, I could still live my life, and everything worked out. Obviously I wasn't going to be put in a residential home, which was the other option. Then in 2015 inconsiderately my mum developed a brain tumour.

KATE - Oh no.

LUCY - It was a benign brain tumour, but it was very big, and the type of brain tumour it is it normally sits on the surface of the brain, but hers had grown down between the two hemispheres, so it was quite a big operation. We got told I think it was on something like the end of April, and her surgery was on 21 May, I didn't have a full 24/7 care package. So we battled. They said, "Residential home" and it was like, "No, I'm not going", so I battled to get a care package, and they said, "Right, you can have it for six weeks". So my mum would have gone back to caring for me single-handedly basically six weeks after major brain surgery.

But then mum suffered a brain haemorrhage and a stroke and developed epilepsy, so that package had to be permanently extended. That was a really traumatic... And I will say it's far harder being the carer than it is being the patient. That helplessness of just sitting there and watching and not being able to do anything is horrendous.

KATE - What was it like to flip those roles?

LUCY - I don't know. It was nice that I could actually do something for mum in a weird sort of way, but I'd rather have not been... and I had to do it. The hospital were really good, so they would move mum's bed over so I could get next to her, and they'd help me to look after her and stuff like that. That's when I really feel I grew up. I didn't even know where my bank cards were, what the pin number was, because my mum had always done it. And it wasn't that I couldn't do it, you just carried on doing it as an adult. Suddenly I had to find my bank cards, guess what the pin number was, start doing my own banking, all the organising.

The interesting thing is, when mum started to recover... she was in hospital six weeks, she was unwell for quite a long time. When she started to recover she came back to a different daughter, and our relationship had changed, and she found that really hard. She felt pushed out because I didn't need her. I had 24/7 care, I was doing everything else for myself, I suddenly didn't need her.

SIMON - You'd become independent in some way.

LUCY - And suddenly she felt her role had gone.

KATE - God, that must have been really difficult for her.

LUCY - Yeah. So you don't think about the carers. You think about carers getting a break as a positive thing, but for mum that was her sense of identity. Looking after me was how she viewed herself and what her life's work was, and to lose that is really hard.

KATE - It's like when parents look after their life limited kids, which is exactly what's happening here, but then they sadly die, then they have this exact sense of loss. Not only have I lost the most important thing in my life, but I've also lost my identity because I was the person who they needed all the time.

LUCY - Yeah.

SIMON - Mel, you've got professional and personal experience of this presumably?

MEL - Yeah. And I think it's right, I think disability happens to the whole family. Yes it happens to the person who has it, but sometimes the carers or the partners are ignored in the support process. So I'm passionate about looking at the whole picture. And yeah, you have certain roles that you negotiate, and again it's quite common that I'm working with one person and they're talking about how their roles have shifted, or their partner has become temporarily ill, particularly what Lucy is saying, and they've had to communicate and discuss now I'm looking after you, and what happened, you were the looker-after, and everything that that evokes. We're quite habitual beings, I think humans, so we're like, "Well I liked that role". [Laughs] It can be a challenge to say, "Now you're going to have to just do a different role and find a way".

KATE - I find that with Holly. Both Holly, my wife and I, have many varied health problems, and it feels like we switch all the time between who needs the other one more, who's in hospital today, who's at home today.

SIMON - Is it seamless, you just kind of know, or do you lick each other's hands? [Laughter]

KATE - Yeah, I wondered why she was doing that, but now maybe it makes sense.

SIMON - I made a joke, but I actually meant it seriously. Do you just kind of pick up the slack, it's a kind of very natural part of the relationship?

KATE - Yeah. I think I am better at caring for her than she is for me.

SIMON - Does she listen to the show? [Laughter]

KATE - I think she'd say the same, she finds it very difficult having the pressure all on her.

SIMON - Okay.

KATE - We do switch. But I find it a lot easier. I'd rather be the one going through an operation, I'd rather be the one having the health problems, than watching her go through it, because you are so helpless and it is awful, and you're just like, 'Why can't it happen to me?'. I'm sure your mum would have been thinking to herself when she was caring for you, 'I'd much rather have all of this on me than any of it on you'.

LUCY - Yeah. And she still says that now, she'd rather be able to take everything away from me. But likewise I would have done anything to take the brain tumour and everything away from her. But it's nice that my mum can sometimes just be mum and not carer.

SIMON - So as I sing a lot, 'Let's talk about sex, baby'. Lucy, you're a member of the Open University's Sexuality Alliance, which works with young people who are life limited. What does it do? How are you involved?

LUCY - It was set up in 2014. We're a multi-disciplinary alliance, so there's healthcare professionals, there's lawyers, there's so many different people, plus some young people. Basically the lady that helped set it up did her PhD on this subject, and she got in touch with hospices to talk to young people about their sexuality and I was one of the people that said yes when they contacted our hospice. But it was the first conversation I'd ever had about sexuality in my entire life, not because it wasn't relevant, but when you're life is about keeping you alive it's like that fell completely by the wayside.

KATE - Sexuality as in you being a sexual being rather than who you were attracted to?

LUCY - Sexual being, relationships, intimacy. Everything.

SIMON - I remember we talked about this where it's seen as a cherry on top of the cake, it's not essential. But it is sort of essential, it's part of it.

LUCY - It's part of everyone. It's how you see yourself, it's your body image, it's your relationship with your identity. It's the whole package. You can take from it what you feel works for you, and that is really important.

SIMON - I remember growing up, and even today, if there is a female in the room as well who's single and me, nobody ever assumes that we would get together, they would think of someone else who would get together. I presume you have that where people don't see you as a romantic being.

LUCY - No. And I'm going to join a dating site soon. Because I've neglected that part of my life for so long I was like, 'You know what, I just want to have a bit of fun, explore that part of my life'. It's funny how the separation... When I told my PAs that I've got at home, they were really supportive. Some of my nurses that I have during the day were quite hesitant. It was interesting that divide. I don't know whether it's the professional barriers or personal barriers or what.

I think that's what the Alliance does so well, it's all about enabling those conversations, and that support for professionals to make sure they know where they stand in the law. So we produced the first Sexuality Guidance and Standards in 2015, it was updated in 2016, and we're re-updating it again this year, and it literally lays out the law, all the different aspects of law, case studies, how it works out. That has been really helpful. Some hospices especially have put in a sexuality policy.

KATE - Laws in terms of what are the laws to assist you to have a sex life?

LUCY - There's like Sexual Offences Act, mental capacity. It's all the laws that can interact with sexuality as a whole. Especially in terms of support with intimacy and things like that, there's quite a lot of issues around where they can support and can't support. I think the problem is you can support someone, but you can't be seen to be inciting that behaviour. It's very kind of woolly the kind of law and how it applies. So our guidance just kind of sets out...

SIMON - That's really good.

KATE - Let's just have a situation where there is somebody who might have a mitochondrial disorder maybe similar to you, and they want to have sex. What would your PAs be allowed and not allowed to do in that situation?

LUCY - They would be able to undress me. Hoist me and move me over in my bed so my boyfriend could get in. Sort out my bags and tubes. Then they would leave and leave us to it. So they can help you prepare and clean up afterwards, but they can't actually help in the act. I've got a couple of friends that their PAs are very good, they both live independently, they're both disabled, and they both manage a package of multiple PAs, and they will often call their PAs in, put each other in the same bed, set themselves up, and then the PAs leave and they leave them to it. So they'll put one of them in the hoist. So you can help to an extent, but you can't help with the act.

SIMON - Can they go round spraying scent and lighting candles and things like that?

LUCY - Yes. And obviously they can position you in bed next to each other. There's all that kind of stuff. They just can't actually incite or be part of the act.

KATE - You're not saying that somebody's using a hoist to have sex, you're just hoisting into the bed?

LUCY - No, hoisting to... you know.

MEL - Come on Kate, you should know about these things. [Laughs]

SIMON - Like a swing.

KATE - Like a swing.

LUCY - When you've got two disabled people how do you work it? Obviously if you've got a hoist it takes the weight off the other person.

KATE - Wow!

SIMON - It's good for the hips.

LUCY - Yeah.

KATE - Simon's speaking from experience.

SIMON - I remember many, many moons ago, I'm blushing having said it, there was a lady and we were getting close to being intimate, and it was quite limited in terms of between us the physicality, and we realised we'd have to phone up her PA and we had to wait like two hours. By that point I must confess we just had another glass of wine and moved on a little bit, played Cluedo. [Laughter] I'm still a bit frustrated now years later, I wish we'd planned it better.

KATE - So being part of the study, did that make you think, 'Yeah, now I'm going to go and get jiggy with somebody'?

SIMON - Or an add-on, you are so knowledgeable and self-aware did it make you think differently as well, did you go, 'Oh, there's a gap'?

KATE - Yeah, okay, Simon's is a little bit more classy.

LUCY - Politically correct. [Laughs]

KATE - Yeah. Mine is the what everybody wants to know.

LUCY - I suppose for me because it had not been part of my life, and obviously being 14 and having disabilities, and even in the years before that I didn't really have the chance to be social with other people, I didn't have that kind of experimentation stage. Because that's what I talk a lot about in my work, we don't get to experiment, to take risks. Because actually you have a legal right to take risks if you've got capacity to make that decision, but when you've got 24/7 care it's very difficult because that professional has got a code of conduct they have to follow.

But I think for me through the work and everything like that it's made me see that I am actually a sexual being and that I am worthy of that. I think when you're a disabled person you're fighting for support, you're fighting for benefits, you're fighting for care packages. I've almost internalised that I must not be worthy. And it's actually reclaiming that feeling of worthiness. I am worthy of all this stuff, and I'm worthy of a loving relationship. Even if I just have a bit of fun with dating and things like that, that would be worth it. But it would be nice to settle down with someone.

KATE - But it's also exhausting.

LUCY - Yeah.

KATE - Fighting all the time it is exhausting.

SIMON - Not with a hoist. [Laughter] Sorry.

KATE - Not sex. Sex isn't as exhausting. Fighting is exhausting and just having to keep going every day. By the end of it your capacity for anything else is almost limited. So it's almost like you have to say, "Right, today I'm going to pace myself and just have sex today. That's going to be my one thing to achieve". Do you know what I mean, like you'd have to prioritise that because otherwise it does feel like it slips down the list, doesn't it.

LUCY - I think disabled people we have to reclaim our sexuality. The world thinks we are asexual, not interested, not worthy, sex is so far off the radar for disabled people. And it's actually saying to people, "No, actually we are sexual beings, we're just like everyone else". I advocate a lot even if that person does not want to explore their sexuality they're still a sexual being in their identity.

SIMON - Presumably when you met the people in this group, what were some of the stories that were coming out? Did it raise your eyebrows?

LUCY - One of my friends, Julian, was in a care home, he was attacked and he developed a condition, so he's trachea ventilated, got very weak muscles. He was in a care home for a long time, and the care home wouldn't allow him to be in his bedroom on his own with his girlfriend. He had to fight and say, "But actually if you're saying the care home is my home, I should be able to do whatever I do at home in my bedroom".

Another case is two of the friends that I mentioned earlier that are both disabled, they met on an online dating app. Faith is of big importance to them, and they both had never thought they'd have relationships or anything. Found each other, then lived together independently. Although people mistake the fact that they're two disabled people living together that they must be a mini care home. [Laughter] Course, because two disabled people can't live together and be in a relationship. Anyway, they have a good sex life. They've got a lovely group of PAs. They talk so openly about it, and some of the stories they've said. They often get stuck in positions where they can't get out of and have to call their PAs to rescue them. They were playing with sex toys and things like that and the PA came in to turn them both in the night, the girl had put all the sex toys between the man's legs, pulled his blanket up, of course the PA's come in whipped the blanket off, whipped the pillows out, and there's all these sex toys between his legs. [Laughter] I talk to a lot of young people that are very open about it, but a lot of people aren't.

[Jingle: Ouch]

SIMON - You have been listening to BBC Ouch. That's it for this episode. Thanks to our guests, Rory Cellan-Jones, Mel Halacre, and Lucy Watts MBE.

KATE - The producer was Emma Tracey MBE. Oh no, sorry, just Lucy round the table that has one of those. [Laughter] Producer was Emma Tracey, assisted by Niamh Hughes and Beth Rose. The studio manager was Michael Bacon.

SIMON - Sir Michael Bacon we call him now. Playing us out is 'Softly Hearing', the new single from Lizzie Emma. Lizzie has a learning disability, but this song is about her hearing difficulties which were only picked up in adulthood. It's from her EP 'Pills'.

KATE - We'll chat to Lizzie on a podcast really soon, but goodbye for now and thanks for listening. Goodbye.

SIMON - Bye.

LUCY - Bye.

MEL - Bye.

[Music: 'Softly Hearing', Lizzie Emma]

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