Thea Joshi is joined by Emma Bailey and Hannah Moore from the Equally Well campaign, which we run in partnership with Rethink Mental Illness. They share how Equally Well UK is working to improve the physical health of people with severe mental illness, with the critical aim of reducing the unacceptable mortality gap that people with severe mental illness are faced with. Emma and Hannah discuss how physical health is often neglected in mental health inpatient services, and give examples of good work that is being done to change this.
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- Become a member of Equally Well UK
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- Check out our reports ‘A Time To Quit‘ and ‘More than a number‘
Music by scottholmesmusic.com
Alethea Joshi (AJ): Hello and welcome to Centre for Mental Health’s podcast, where we explore ideas around mental health and social justice. I’m Thea Joshi, and in each episode we hear from people with lived experience of mental health problems, people working in a specific area of mental health, or some of our own team, to discuss how we’re fighting for equality in mental health.
So Equally Well UK is a campaign we run at the Centre in partnership with Rethink Mental Illness. And in today’s episode I was really pleased to sit down with Emma Bailey, who project manages Equally Well UK and Hannah Moore, their vice-chair, about how Equally Well UK is working to improve the physical health of people with severe mental illness. We know that the stats around life expectancy for people living with mental health difficulties like schizophrenia and bipolar are deeply worrying, so I wanted to hear from Emma and Hannah about how Equally Well is working with people with lived experience and clinicians to turn the tide on this and address such stark inequalities.
AJ: I am here today with Emma Bailey and Hannah Moore from Equally Well UK. Hi, guys. Hi. Oh, it’s so lovely to have you here and we’ve been wanting for ages to chat to you guys about the Equally Well campaign that we run with Rethink Mental Illness and I just want to dive in. And Emma you’ve been leading the project for the last five years for listeners who haven’t heard about Equally Well, could you just talk us through it a little bit?
Emma Bailey (EB): Yeah, of course. So Equally Well, is an initiative which was set up by a lady called Helen Lockett, in New Zealand. For those that aren’t aware about what Equally Well is, we look at the early mortality gap for people with severe mental illness where they tend to die around 15 to 20 years earlier than the general population. This is something that we know is a massive inequality, it has to change. And that’s why Equally Well is formed. And we’re working really hard with the growing membership to change that. We know that no one organisation can close the gap on their own. So we’re very keen for as many organisations as possible to work with us and share what they’re doing, and we also share tips with them and work in collaboration. So Equally Well was formed almost five years ago now. And in September, it’ll be our fifth birthday so watch this space if you’re a member. So I love the excitement there. It’s hosted by Centre for Mental Health in partnership with Rethink Mental Illness and it’s coproduced with an expert by experience group chaired by Marsha McAdam, and vice chaired by Hannah Moore, who we’ve got with us today. And then we’ve got the clinical group alongside that chaired by Professor Wendy Burn. So everything that we do is done in coproduction working together as a partnership and I think that’s why it’s been so successful so far.
AJ: Amazing. I feel like whenever we talk about this, I find myself getting quite passionate about it because the more we discuss it, the more I recognise that this is a critical part of what the Centre does around equality and mental health. And there’s this really stark inequality staring us in the face that people with severe mental illness don’t have the same access to the physical health care that they need to support them to live healthy lives. So that’s what we’re really trying to do here with Equally Well, right? And I think, as you say, it’s so exciting to see clinical expertise and lived expertise coming together to create something that works for people who need it, this thing of like nothing about us without us. And it’s saying like, actually, people who’ve gone through that experience are the experts in it. So on that note, Hannah, could you tell us a little bit about how and why you got involved in Equally Well?
Hannah Moore (HM): So I when I was younger, I was doing professional gymnastics, I was doing dance, I was doing all of those things. And my mental health declined quite early around the age of eight years old and by the age of 14, I was put in hospital from I think 13 to 18-year-olds, and we would basically sit around all day smoking and avoiding the education and being given lots of medication. And within four months, I put on four stone and I was unable to dance. I was unable to do gymnastics. It was awful. I came out of that hospital a year later, probably about six stone bigger than I was and morbidly overweight. So, this stopped my dance, stopped my everything. It was just awful. And being obese basically is a massive part of why people die early. And that is because of the medication that the mental health people gave me. So it’s really important to me, I’ve spent time in my life where I’ve lost weight, and then I’ve put on weight. And I’ve lost weight when they’ve taken medication and things like that. And so it’s all down to medication, I got put on a depo recently, and I put on quite a bit of weight. And then it just spiralled out of control. And, to me, that’s really important that you get to do the things that you want to do. But you can’t if you’re that overweight. And that’s why I’ve got involved in Equally Well because it’s parity of mental health and physical health, and in hospitals still to this day, because I do still do stints in the hospital when I have relapses. And still to this day, they don’t look after your physical health. They don’t. It’s all about mental health and medication. And yeah, they do the blood pressure every day or four times a day if they want to or they forget to do it once a day and then that’s about it. That’s all it is. That’s why I’ve got involved in Equally Well for people to know that it’s not okay for someone to be put on medication, and to be putting on the weight without any interventions being taken to try and help them not put on the weight. Because it’s just, it’s awful. It really is. And there’s lots of other different things like smoking cessation and I’m sort of a smoker, I vape I sometimes smoke when I go out for a drink or whatever, and then buy a cigarette for the next week. But all those things is why I joined Equally Well because they need to be taken into consideration when you’re in just because your mental health is on work doesn’t mean your physical health should be ignored.
AJ: I mean, that’s exactly it, isn’t it? And thank you so much for sharing that. Yeah, I just want to acknowledge that this is literally your lived experience. And so I really appreciate you sharing it with us today. And just sharing it with our podcast listeners, because that’s literally the reason that Equally Well exists, isn’t it? So thank you. I think that’s what we’re talking about a lot at the Centre is this speaking up for social justice and mental health. And it’s like, as you say, it’s not okay that obviously, mental health services are trying to support people’s mental health, but to look at that part of someone and to completely ignore their physical health just doesn’t make any sense.
HM: Yeah, I totally agree.
AJ: So Emma at the beginning, you mentioned that Equally Well exists because the life expectancy of someone with severe mental illness is 15 to 20 years shorter than someone without? And obviously, that is shocking and disturbing, it’s a horrible stat to have to say. Can you tell us a bit more about that? And what the reasons are behind it?
EB: Yeah, definitely. And it’s a complex one, it’s not a sort of straightforward because of this. However, there are the sort of key things that play in part with this, the gaps larger due to a range of complexities. So symptoms sometimes not being believed. So missing signs of emerging illness. Quite often, it’s the fact that we know that practitioners are overworked, they’ve got so much and they’re focusing on the physical, the mental health side of things of the patient, rather than looking at the overall side of their whole health. Then also the side effects of medication like Hannah’s pointed out, medication can play a massive part in this. All too often we hear about how someone’s put on medication rather than being told about the side effects or how the person can go about improving and making while preventing the side effects. But also, we’ve heard from patients that it’s a lot better if they talk through with the GP, they would like to be involved in the decision-making, but they would rather have the options. Though they’re being put on medication, it’s better to give them this range of things, tell them about how they can prevent putting on weight, and some side effects that they can know about. Then also unhealthy environments. We’ve heard of some inpatient wards that can be very unhealthy from being able to order multiple takeaways a day to only having access to outdoor spaces if they’re smoking. So a lot of them have ended up taking up smoking so that they can go outside if they’re able to. Yeah. And a lot of the time, the staff working on the wards want to change this, or they also don’t want to make the people living with severe mental illness stay worse. So, they agree to it because they want them to have the right sort of the best possible stay. However, we know that improving their physical health will achieve this and I’ll talk more later on about sort of interventions that we know of. And then some of the horrible stats are things like people are more likely to have diabetes, heart disease, lung disease and cancer, they’re more likely to have unhealthy weight, and more likely to have multiple physical health problems alongside that, and that’s all too often just not being picked up to do their medication. And just to say, we say, quite often you hear about unhealthy lifestyle choices. And we know that things aren’t a choice if you’ve not got the money to be able to afford healthy food and as a lot of our expert by experience, members have said, I think we all know this, it’s cheaper to go down to the chippy than it is to go to a shop and buy fruit and vegetables. And if you’re struggling to pay the bills, or put food on the table, you’re gonna go for the cheaper options, because that’s all you can afford. But at the same time, if you think about a time when you were last really unwell, the thought of getting up to even brush your teeth, or wash your hair, or make a meal from scratch, it’s just not something that crosses your mind when you’re really unwell. If you think about if you’re really unwell with your mental health, you’re probably not going to go into the kitchen and start making organic, healthy, expensive meal, you’re going to end up thinking about takeaway, which is easier and more convenient. So I wouldn’t call it a lifestyle choice. But there are things that are initiatives that are being put in place and things that are being done to help individuals.
HM: Can I interject there? So some forensic units at the moment, and PQ unit psychiatric intensive care units are actually putting in place only one takeaway a week or two takeaways a week, which I think is a bit too much really for, for someone to be having two takeaways a week, maybe one maybe once every two weeks. I don’t know. I don’t know how many people times people have takeaways, but in acute wards things like UberEATS, Just Eat and Deliveroo is so easy to access on your smartphone – it’s ridiculous. I was and so was the rest of the patient cohort, getting three, two to three takeaways a day, whether it was a bubble tea, or a milkshake, or KFC, and then just spending all their money on takeaway, because you don’t have anything to spend your money on while you’re in there. So why not spend it all on takeaway?
AJ: Yeah, and I think it was so helpful what you were both saying there about kind of this like weird narrative that’s out there about like lifestyle choices and this kind of idea of like blaming people for their health or lack of, and as you say, like, we can think about times where we’ve not been doing well mentally. And you don’t have the energy to be thinking about what’s healthy, or should I go for a run or not? It’s just you’re just like whatever’s going to help you feel a bit better, right? And I love food and so for me, that’s definitely one of the things I go to. And so to be in a state where potentially you are in a crisis, like literally a psychological crisis, and then to then be saying, Oh, well, people should be eating more healthily. And it just, doesn’t make sense does it? And when you add on, as you said, Emma, especially at the moment, the cost of living and the cost of food, and fuel to cook and all of these things, you just think it’s a really weird narrative that’s going around. So it’s like really cool to hear you guys challenging that and highlighting the evidence around it.
EB: Say, during the pandemic, we actually created a resource which shed some helpful tips in it. So it was things like frozen veg and going for a walk and things that can work for different people. And I think we’d added in different links from different organisations, from our members, Arthritis Action had included a resource that there was a link in there. So I recommend looking at that as well. There’ll be other Equally Well, resources, but that one just sprung to mind as you were talking.
AJ: Yeah, we’ll stick all of that in the show notes.
HM: I’m an all or nothing person. I either eat everything in sight, or I just when I’m ill, I just stop eating and drinking completely. And on my last admission, I won’t say what hospitals because it just doesn’t really matter. It’s not appropriate. But on my last admission, I stopped eating and drinking for 40 days, whilst on a medication called lithium. When you’re supposed to drink two litres a day of water to keep your levels of hydration up. And I wasn’t eating for two days and I wasn’t drinking very much. I was drinking very minimal when I was basically forced to drink and they weren’t doing any physical tests. All they were doing was your blood pressure. And it took to the stage on the 40th day where I had a cardiac arrest and had to be revived after seven minutes eventually of being dead, technically, I guess. And it took them till then, to do any tests, obviously, I got taken to the General Hospital, and I found out that had lithium toxicity. But really, if they’ve been doing their job, they’ve been looking after the physical health of myself, they would have known I got lithium toxicity because I should have done lithium tests, I should have done blood tests like they do in the community, they should have done lots of other tests, they should have taken me off my lithium, if I wasn’t eating or drinking, you can’t not eat or drink when you’re on lithium. And it took to that stage where I was on lithium toxicity where I can now no longer ever take lithium, when it was a medication that really worked for me, and didn’t cause weight gain. And it’s, you know, that really needs to be prevented in inpatients it’s really difficult to get your physical health done. Yes, they do your blood pressure. Yes, they sometimes if they remember, on a Sunday, do your weight. But most of the time, they forget. And I just think it needs improving, I think Equally Well is campaigning for that in lots of different ways.
AJ: Thank you so much, Hannah, for sharing that. And it goes without saying we’re really grateful you’re still here. But you know, we’re desperate to know what is being done to prevent this, what is going on at the moment in terms of mental health services?
EB: Just to apologise in case you can hear my cat snoring behind, I thought I mentioned in cases a little bit of a sound in the background. And so we’ve got some brilliant members that are really working hard to address the physical health of people with severe mental illness and help improve it. Some of them have been doing work, for instance, in their kitchens. So they’ve been involving their patients in the cooking side of things, which not only helps with the relationship that people can have with food, but it also helps them when they end up leaving hospital and back in the community, as well. And I think it probably helps with boredom. If I was in hospital, then it’d be quite nice to be involved in cooking and deciding on what’s going to be made. Then others have been doing things where for instance, as Hannah was sharing earlier, there are some hospitals where physical health just isn’t a priority when you’re in for your mental health. I’ve had members share that they’ve struggled to get someone a physical health proper check for a certain condition that they’ve had. And it’s not until they’ve had to call an ambulance to then take them to the physical health hospital, that they’ve had the support. And I think as a staff member, that’s probably incredibly frustrating as well. So a lot of them have been doing work to make sure that a physical health nurse or doctor is going on the wards on a regular basis. We’ve also heard about pharmacists that have been going on to the wards as well. And speaking with patients, there’s a number of different initiatives that members have been doing on that and improving services. One of our members recently shared that they’ve actually been working with training their staff during handovers and that’s when the most amount of staff are on the floor at the same time. So what they’ve been doing is very short sort of snippets of the HEE training that’s available on the website, it will be in the next Equally Well newsletter, although when this goes live, it will be the last Equally Well newsletter for members and others have been basically creating dedicated teams. But with the physical health check, we’ve been doing some work with NHS England on the outreach work. And there’s some brilliant work that’s been done across the board there as well. So It’s so reassuring to see our members working hard to improve their services. And others come to us and they’ll say we know that this isn’t working, what can you do to help us so we’ll be able to share what other members are doing or speak to other members to find out for them to sort of help address that and create more of a network working together.
EB: And one of our other members Closing the Gap has also done research into tailored smoking cessation initiatives that we know does an amazing job to help people quit. There’s also other work being done around things like Champix, which Hannah will be able to share her experience in that and there’s a lot of tailored support that’s been created. And as I will be like a broken record probably by the time this podcast finishes, the best services are always the ones that are created in true coproduction with lived experience members as well. So that’s something that we always advocate for. I know it’s hard to build that into the budget and the time but it just makes a much better service in the long run.
HM: One thing that’s quite shocking is the statistics of people with severe mental illness and people smoking, with not a severe mental illness is a massive difference. There’s so many people smoking with a severe mental illness compared to people without a severe mental illness. And that really needs again needs to change. And I think it’s difficult to access smoking cessation when you have a severe mental illness because there’s lots of different things that come into play. When you’ve got a severe mental illness almost like a brown letter coming through the post and thinking, I don’t want to open that. Why? Because perhaps they’ve stopped my benefits when it could just be a physical health check, or have you got any ideas to stop smoking, but I actually had something called Champix that I got from my doctor when I was in the community. And it’s a medication that you take while you smoke for the two weeks. And it actually puts you off smoking. And I thought I thought, Yeah, this isn’t going to work, I’m going to be smoking like a chimney still. But by the end of the two weeks, I was smoking, I was gone from like 10 to 15 the day down to about two or three cigarettes a day, and not really wanting to smoke them. Yeah, and then I quit for a year. So that was really good. And I had some really good support with it, I had really good support with from the smoking cessation nurse. And she rang me every week. And but unfortunately, at the end of it, well, before the end of it, my mental health took a bit of a dip, and they said it could be the Champix medication, so we’re gonna take you off it. But I did manage to quit for over a year. And I’m planning on maybe trying it again.
AJ: That’s amazing. I think I’m right in saying that, you know, there’s been a lot in the past about, you know, people with severe mental illness, that they will just let them smoke. It’s like the one joy in life, right? Like smoking on wards. And this being just a thing of like, you know, whatever helps someone to feel a little bit less bad, right? But we also know that actually, lots of people with severe mental illness do want to quit. But my understanding is that once you get into an inpatient unit, getting support to stop smoking is just often really not there?
HM: No, it’s not. It’s you’re basically once you’re admitted, you’re told you can’t smoke. Because whether you’re on 40 a day, or whether you’re on 10 a day, once you go into a NHS hospital, it is no sorry, you can’t smoke, you don’t get the options of would you like a patch? Would you like an inhalator? Or would you like this, would you like that? You get given one of those little inhalators that look like tampons and basically get told you can have one of those a day. And you can puff on that. And in some hospitals, you are allowed to vape. So in my last admission, I’d never vaped in my life and I obviously had to quit smoking because it was on an acute ward and you wasn’t allowed to smoke. And they didn’t give me anything not even the tampax-looking inhalator and I ended up starting vaping. And now I vape and smoke – it sounds really bad.
EB: There definitely needs to be tailored support, doesn’t there? And I think it is tough when services are stretched but all of the evidence shows that a tailored smoking cessation programme is needed for people especially when you’re going into hospital and you can no longer smoke.
HM: Yeah, in inpatients it’s really important. It shouldn’t just be oh, okay you can vape because you do then go out being a smoker and a vaper.
AJ: It just feels like there’s an even wider conversation here about mental health services and psychiatry. And it’s something we talk about a lot. You know, it’s very much seen as mental health and just mental health and this kind of failure to acknowledge that physical and mental health is so closely intertwined that you can’t literally just look at one or the other. And there have obviously been steps forward to improve that and you’ve got liaison psychiatrists in some general hospitals, but we’re still seeing a massive inequality here, aren’t we in acute and inpatient psychiatric care? I’m acknowledging that people are not just minds and brains but their bodies as well and kind of looking after people holistically.
EB: So it’s not often I didn’t think I didn’t know about it until I started with Equally Well, where the medication levels actually can change your smoking. So I think that’s one factor that people don’t often realise, but also the cost savings as well in the long run, but people want to quit smoking quite often, not everyone does, but the majority of people do want to quit smoking, but it’s just getting the support to quit and being asked in the right way, rather than being told you’ve got to quit, because I think most of us don’t work well by being told to do something. And instead asking the individual and seeing how they can be supported.
HM: Talking about the medication levels, it’s clozapine that’s one of the medications. It’s a really strong medication and if you smoke on it, it can actually lower the way the medication works on you. So I can remember when I was in a secure unit, as soon as we would get our first 15 minutes of unescorted leave, we’d run to the shop, buy a packet of 20 cigarettes because that’s all you can buy these days, smoke as many as you can, in the 15 minutes, then bury the cigarettes somewhere that you hope we’ll be able to find them when you then come out for your next 15 minutes and the smoking was shooting the clozapine levels high and it was really dangerous for people.
AJ: Hannah, I would love to know if you’ve seen instances where services are actively seeking to turn the tide on this because obviously what we’re talking about is really hard. But we know there are examples of good stuff happening.
HM: So I work for the Royal College of Psychiatrists who actually are members of Equally Well, UK. And what I work for them doing peer reviews, I work for the forensic network and the PQ network, which is psychiatric intensive care. So we visit different services. And when I’ve gone into services, especially the forensic services, there’s been lots to do with physical health and them getting them to the gym, getting them to see the GPS, getting them to see the dentist, even getting them to do opticians and they’ve got like healthy weight management and stuff like instead of cooked chill food, like the region food that’s like ready meal slop, some units are actually now cooking on the unit. And you’ve got wards that are the patients are able to go out with a member of staff or sometimes without a member of staff and get their weekly shopping. And then they’re allowed to cook for themselves. And they’re encouraged to cook healthy meals and things like that. So there are some really good initiatives going around, especially in forensic units.
EB: It’s always so interesting to hear about the work you’re doing Hannah, and especially when we hear from our Equally Well members as well. And I think one of the things that I’ve noticed in the last five years is when we first started Equally Well, a lot of members kept reinventing the wheel. Whereas in the last five years, they’re working together more and it’s becoming more of a network. And it’s great to be able to share with other members what’s happening. And I think that’s one of the core things that Equally Well’s role is to share best practices and really help others to thrive in the areas that they might be struggling a little bit more in. Because no one organisation is doing this perfectly yet, there is still a long way to go to get every service the best possible it can be and hopefully close that early mortality gap sooner rather than later.
AJ: That’s so exciting to hear because it’s this idea of yeah, everyone has bits of good practice but it’s not joined up. And I think that’s the beauty of Equally Well, it’s bringing together people with lived experience and clinicians and services on the ground to say look, here’s what we’re doing, let’s share it and have it done everywhere. And that’s amazing, amazing work. So thank you, that’s really exciting.
EB: We’ve also got the research side of it as well. So bringing in the organisations that don’t have a service but they’re doing things on the other side of it, so the research or the knowledge base. It really does bring everything in together.
HM: And also the fact that we have a members forum, and things like that, you get to share all your great initiatives on the members’ forum. So if you’re not part of Equally Well, then you want to get part of Equally Well, because you will learn lots of different stuff from our podcasts, from our webinars and our newsletters. So all of that goes out to every one of our members. So just get joining Equally Well.
AJ: Amazing. Thank you guys so much. And yes, we will obviously link in the show notes to how you can become a member of Equally Well and lots more information on that. Just before we wrap up, I think one of the amazing things about Equally Well, one of many, is this really incredible and beautiful model of coproduction at the core of all your work and I think it’s really exemplifying how lived experience should be at the core of any of this kind of work and it’s something that’s talked about a lot but I think Equally Well it’s really sort of putting their money where their mouth is. So could you tell me a little bit more about that kind of model and why that’s so critical to Equally Well’s work?
EB: I think it is quite unique in a way or it’s becoming less unique, which I love that more and more people are doing. But when we first started and when I heard about it from Helen, and then Equally Well in the UK started our own version, so we slightly adapted it, I feel like I’ve probably loved working on Equally Well, so much more, because we’re all a partnership. So as the person who project manages Equally Well UK, I’ve never seen it as I’m higher than anyone else. I’ve always seen it as partnerships. So I listened to the Expert by Experience members and the Clinical group members, and the overall Equally Well members and we see it very much as everyone’s important, everyone’s playing apart and feeding in. So when we decide on the Webinars, I do them very much by after having the Expert by Experience meetings and the Clinical group meetings taking on the various points that everyone shared, and making sure that the key factors are put into play. However, we do also have others where an Expert by Experience member might share something like their oral health being neglected, which others may not have thought about so therefore, we’ll end up doing a webinar on that, which we did do. But we very much try and pick up topics that not everyone will have thought of. And then also the more obvious ones, like physical health which is just as important. But the Expert by Experience members, I’ve learned so much from them, because they are a partnership. Everything they say feeds into Equally Well and really is valued, from when they raised concerns around the cost of living, we then fitted it into a winter webinar, where we looked at the whole effects of the winter, and severe mental illness. So it’s very much sort of core team rather than hierarchy. And I think that really plays into part when we’re designing any of the work we do and even putting in bids. We have our Expert by Experience members involved and we also have the clinicians involved as well, so it’s a true coproduction. Hannah’s done a lot of coproduction as well and so she might feed in a bit more on that side.
HM: Yeah, I don’t think I’m on my own in saying this either. But we don’t, I think some places treat Expert by Experience service users and patients and they’re just listened to and then other decisions are made, but in Equally Well as a part of the Expert by Experience group and now Vice Chair, I don’t think I’ve ever been anywhere that I’ve felt so listened to. Not even just because I’m the vice chair now but even when I was just part of the Equally Well, Expert by Experience group, I still felt that my voice was really heard. And now I’m part of the clinical group because I’m the vice chair with Marsha as the chair. We get to bring what the Experts by Experience have to say to that group, and you see the process and how it all works. And in the clinical group, they don’t just go okay, that’s really nice, let’s move on. It’s, it’s really okay, how can we work with that, and let’s get that going and stuff and I think that’s really, really good. And I couldn’t feel more blessed to be part of Equally Well, really.
AJ: Wow, that is a really lovely note to end on. And then this has been quite a bittersweet conversation because I’ve loved chatting with you guys. But very sadly, Emma is actually moving on from Equally Well. So this is also an opportunity to say a massive thank you to you for the way that you’ve led it over the last five years and all the work that’s gone on alongside the different groups. So stay tuned, we will be appointing a new project manager for Equally Well, the work continues, it’s very much not over but a massive thank you to Emma, and thank you to both of you guys for chatting to me today. It’s so exciting. We’ll put loads more information in the show notes. But thanks for joining me today. Thank you.
AJ: Thanks for listening. We really hope you enjoyed this episode. And you can find lots more information about Equally Well in the show notes or at equallywell.co.uk. If you found this episode helpful, please keep our vital work going by donating at centreformentalhealth.org.uk/donate. See you next time.