We asked for your thoughts and questions, and you did not disappoint!
Thank you to everyone who contacted us. In the first of another 2-parter, Ellie will respond to your questions about her experiences both working in and being admitted to mental health hospital. The questions were SO good, that we’ve had to spread Elllie’s responses over two episodes – and the second will land in your feeds next week.
If you haven’t heard our three episode miniseries on mental health hospitals you may want to go back and listen to that before listening to this episode. It begins at episode 15.
Please note that this show does not constitute medical advice and is not a replacement for seeking professional help. You can find our more about the show and get signposting to support on our website anyamedia.net/livelyminds
W: Hi everyone, before we begin todays show I would just like to give you a heads up that today’s episode includes references to suicide and institutional abuse. Please take care whilst listening and for signposting to support visit our website anyamedia/livelyminds.net
W: Hello, my name is Will.
E: And my name is Ellie.
W: You are listening to Lively Minds, the podcast about mental health challenges that go beyond the ebb and flow of the everyday.
E: The podcast that is less about how we deal with our mental health and more about how we understand it in the first place.
W: This is a very special episode of Lively Minds. A few weeks ago, we did a three-part mini series about Ellie’s experiences of both working in and being admitted to, mental health hospital. If you haven’t heard our three-episode mini series, you might want to go back and listen to that before listening to this episode. We asked you, our listeners, to get in touch with your thoughts and questions. And in today’s episode, Ellie is going to answer them.
E: At least to the best of my ability.
E: So thank you to everyone who contacted us. There were some really, really, well, all of the questions were brilliant and all of them gave me a lot of food for thought.
W: In fact, the questions were so good that we are going to answer them over two episodes, this week’s episode and next week’s episode. Yes, that’s right. You won’t have to wait two weeks for part two, which will be our final episode of season one. So I think we can just move straight into the questions, Ellie, if that’s alright with you?
E: That’s fine with me.
W: We’re going to start with a question from John and Gail. This message was written by John who says,
“It wasn’t clear how much the GP was involved in Ellie’s situation, either before or after her hospitalisation. As retired old school GPs, Gail and I both feel strongly that involvement of primary care, which is GP and team, could, would have prevented admission. Meanwhile, I was pleased that Ellie had positive views about some of the professionals involved in her care. As you know, the NHS is on its knees and psychiatry is one of the so-called Cinderella specialties, underfunded and to be honest always has been. Nevertheless, the system did use to work better with a functioning community mental health team and better communication. As for complex presentations such as Ellie’s, i.e. a combination of physical, psychological, functional, medical education has never been very good at handling these, partly because they’re only partially understood anyway and have tended to lean towards a more binary and reductive model. Some of us did try to encourage a more holistic model,e.g. the biopsychosocial model, underpinned by patient-centre communication, also involving patients and carers in the teaching and learning, but it often felt like one was trimming against the current. How would Ellie see medical students and junior doctors getting appropriate education?”
Over to you, Ellie.
E: Okay, well I agree with everything that John just said about how it did used to function better in the sense that back when community mental health teams were better funded and more supported. And in terms of the professionals involved in my care, I have also had outside of that particular experience, which is what I was talking about in those episodes, I’ve had some brilliant social workers and I’ve had an absolutely brilliant GP. So yeah, I do have lots of positive views on some of the professionals involved in my care. I think my experience is in that hospital though, I just didn’t really have many good ones. And yeah, the idea that mental health is a Cinderella specialty is, I agree with John, is just, it’s a shame that it’s still seen like that. And it seems ridiculous as well, given that mental health is something that we all have. Everyone has mental health, whether it’s good, bad, sometimes good, sometimes bad, usually bad, it’s, affects everyone and therefore it shouldn’t be seen as such a specialty.
In terms of where was my GP involved in this, I can’t really remember, but at that point, I had my wonderful GP. So yeah, the answer is basically just, I can’t really remember. He was the best GP I’ve ever had, but because that period leading up to my admission, I was so disassociated. I don’t think there was a point where I went to the GP about how I was feeling, because how I was feeling to me was just sort of a way that I often felt, they know that I have whatever mental health record so I didn’t really see the point, I suppose, at making an appointment to say ‘oh I feel shit’ and then it would just be like, well yeah we know, but yeah I could have done, like that’s me guessing why I didn’t go to the GP, that and obviously the wait time would have been like two weeks and this was kind of, I think I deteriorated quite quickly so I hope that’s sort of probably an unsatisfactory answer to that one.
In terms of medical students and junior doctors getting appropriate education, I know that this happens in some courses because I know people who have gone and delivered lectures, but I also know from, that it’s not on all courses. I have a friend who on their mental health nurse degree, they’re very read up and they and I talk quite a lot about different approaches to mental health and the recovery model and we talk a lot about medication, but they have told me so many times that it’s only because they’re interested in alternative models of mental health care that they even know about medication-free attitudes, different frameworks that are being tested, the Hearing Voices Network. And I found this really shocking because I thought, well on your course, three years, surely there’s a, at least a module or something that talks about alternative mental health support that people can get that is outside of the hospital setting in which mental health nurses work. And they were like, nope, not at all. And that really, really shocked me. And that is not very long ago. We’re talking, you know, that degree was, they were on that degree program within the last like six years or so.
But I also know people who work for groups like the Hearing Voices Network or local campaign groups or different kind of therapeutic sort of services who are often invited and go in and talk to students and you know, give a lecture about what they do and where these alternative models sit, in reality in the UK within a context of an NHS framework, which is usually obviously in the community and by either self-referral or GP referral. So I know that that can happen. So my answer is that I think that needs to happen more. I think if you can go through, if it’s possible to go through a three year degree, which qualifies you as a mental health nurse and to not be taught about any other ways of viewing mental health other than completely medically, I do think that’s a big problem. And I do understand that mental health nurses are working usually in inpatient settings, which is, in the UK an inherently medical model thing, but you’re in, in three years, you should be learning about all aspects of mental health and people and how people view their own mental health, which of course isn’t going to always be the same way that the NHS views their mental health.
So, my answer is that I think there needs to be a big sort of emphasis put on that in degrees and embedded ideally into sort of a module about alternative models of mental health or whether it’s, I say alternative therapies, I don’t just mean like lavender oil, I mean kind of things that aren’t prescribed usually nationally on the NHS. I think it needs to be really embedded into the healthcare. And similarly, I do know quite a few junior doctors who obviously train a lot longer as a junior doctor, but from friends I have who are doctors who were studying within the last 10 years, say, I know that in, those that did modules focusing on mental health and psychiatry, they did learn quite a lot about more community-based mental health care and alternative models and things like that. And I suppose maybe that’s, well, I don’t know why that is, maybe that’s to do with, I guess, GPs. If you’re going to become a GP, you’re, you know, that’s a whole sort of different job. You’re presented with people with a whole range of issues and you’re trying to support people in the community by nature of being a GP.
W: One of the things that interests me most John’s question I think is how we can support a better interface between individuals experiencing a mental health crisis, the specialist care that you ended up being admitted to and general practice. Have you any more thoughts on, on how that could be better encouraged and supported?
E: I mean we’re talking at a time now where as far as I’m aware most GP surgeries in the country have move towards this weird model of you have to, well at my GPs now, you have to fill in an online form and someone will contact you within two days and that’s the only way for you to get an appointment.
W: yeah, yeah
E: I don’t know what it’s like at other surgeries but I do know that a lot of other surgeries you can only phone on the day to get an appointment on the day, there’s no more kind of appointments in advance.GP surgeries are going through this enormous overhaul of how they work, I suppose in an attempt to deal with how completely overloaded and underfunded they are. So I kind of don’t know how to answer that question because the GP process to me at the moment seems in a state of flux and quite chaotic. And so I don’t know where mental health sits in that. I suppose in theory, the way that, you know getting an appointment on the day model, and then sort of triaging to decide who gets the appointment today and who gets to come in tomorrow morning kind of thing. I suppose that would solve the problem that I mentioned earlier of like, well, what was the point in me phoning the GP in the state of crisis if I wouldn’t get an appointment for another two weeks? I guess it solves that problem. And it allows a kind of a level of triaging. However, to my experience, GPs are no better connected to local mental health teams and social services alongside this model. And so I don’t really see what support they could give immediately, even if that was the positive.
W: Yeah, and I guess there’s something else, isn’t there, there about how a better funded primary healthcare system, a healthier health system in general, would help to catch some of these issues before they became crises?
E: Yeah, yea, and that goes back to my overall thing, which I think I probably will talk about in one of the later questions, but that local services need to be funded more, localised and community-based mental health care, which includes local community mental health teams, which is where mental health social workers are based. Like more needs to be put into that because the fact that it’s been taken away is why people’s choices when they’re in a state of either verging on crisis or crisis are now so small and binary, as John said. You know, you either go to A&E or, you know, what are your options?
W: Let’s move on to the next question. So this one is from Jenny who says,
“I’ve really been enjoying the podcast. I love your thoughtful approach to each topic and I’ve been learning a huge amount from it.”
W: Thanks Jenny!
E: Thanks Jenny!
W: “Thank you to Ellie for sharing some of your experiences of being admitted to
and working in mental health hospitals over the last three episodes. You briefly mentioned a few examples in Scandinavia, I think, but if you have the time I’d love to hear a bit more about some different models or approaches to mental health hospitals that you think we could learn from here in the UK if funding and lack of resources was no longer the massive issue that it is.”
W: She’s got another question but I’m going to start with that one.
E: Are we going to start with that one?
E: So, thank you Jenny I’m glad you enjoyed it. Scandinavian examples. I mean, first of all, I think it’s probably worth saying that sometimes we like overly romanticise a lot of welfare state-related things in Scandinavian countries because it’s not more complicated and not as perfect as I think we sometimes make out. However, I think one of the examples I would have had in my head if I did refer to Scandinavian countries would be the Hurdalsjøen, which I hope I’m pronouncing that correctly, the Hurdalsjøen Recovery Center, which is in Norway, kind of 40 minutes north of Oslo, I think. So it’s by a lake, and this is a medication-free mental health hospital. It’s worth saying that it is private, it was privately set up. It’s not a public health equivalent of an NHS hospital, it is private. But I do know that the public health officials at the time that this was set up, which is 2015, had been arguing for more kinder medication treatments across mental health services in Norway, which is, you know, even that is like miles away from where we’re at in the UK.
But I mean, this place in Norway, the hurdles you’re in recovery centre, so it’s technically an inpatient mental health hospital, there’s no medication. If you look into it, and I can include this in the, in the notes, but one of the case studies, and she’s a huge advocate for this hospital and the approach, is a young woman. Tonje, again, I hope I’m pronouncing that right, she talks quite publicly about her experience. She was one of the first people to show up at the hospital. She’d been diagnosed with so-called treatment-resistant schizophrenia, which is a controversial diagnosis in itself. She was a very young woman, had, had something like 220 forced hospital admissions. She said that she wanted to kill herself every single day. None of these experiences in mental health care had helped her at all. Urm, she was the first patient kind of to be treated properly at this hospital. And she’s now like living completely independently, which she’d never done before in a village nearby. I think she still, I think she has a job working at the hospital and somewhere else and she’s a huge advocate for its approach and this is someone whose entire life had been spent within a very medicalised, you know, having very extreme experiences that were dealt with medically at the sort of extreme end of the spectrum. So this will be forced injections of medication, enforced hospital stays. It is an extreme scenario but to me her story and where she is now is just, I find it incredible and beautiful and I don’t see how research in public health practice can ignore it, because cases like hers would be the ones that people who would are, be super sceptical of a kind of medication free mental health hospital would probably think of cases that on paper are like Tonje’s, constant admissions under surveillance, constant depot injections of mental health medication, the more extreme cases, that’s in quotations extreme, but they, they are quite extreme experiences that she had and it was constant and that’s kind of been her whole life. So people who are sceptical of something like a medication free mental health hospital, I think would refer to cases like hers and be like, well, you know, how would that work for someone like that? You know, you can’t just, like that person wouldn’t be able to just not be on medication. That’s not an option for someone who has presentations as extreme as that and a history is as lengthy and crisis ridden as that. And I just kind of think, well someone with a record exactly like that went there, received the best treatment she’s ever had.
A lot of, when you read interviews with her she, I will put these in the show notes but when you read interviews with her she says about how much of a difference the staff, just approached to her, and the way that they spoke to her, made a huge difference. I think she’d stopped talking to medical professionals completely. She went there, the sort of attitude of the staff there is what made her feel safe and relaxed and open up and talk. And I think that also makes another point, which is how much the views and openness of staff’s understanding about what mental health is, like how important that is to people and how much people can pick up on that. And she’s living independently in a village nearby, I think she’s like early 30s now, lives completely on her own, works full time, goes like, I think she still works, I think she works also at the hospital, I might be wrong about that, but yeah, to me that is just really such a moving story and proof that it does work, it can work. And in a sense that’s an extreme story, you know, no medication whatsoever in like, an open hospital. But if that can work, then what more evidence or argument do you need to kind of at least reassess our reliance and trust in pharmacology as the only real sticking plaster?
So that’s kind of my favourite Scandinavian example. And then I know there’s a similar place to that actually in Finland that I know less details about, but I know there’s one its quite rural in like, I can’t remember, but somewhere very rural, I think in north of Finland, which is a similar, you know, like an open setting and very sort of, looks at the person holistically not just medically. I know that in Finland they put like, a big lot of funding and things into online therapy which I know has its own barriers, for example not having access to or confidence in, technology, or finding technology kind of triggering and all of those sorts of things. However the reason it was that they chose to put so much funding of the sort of public health money into this online program was especially because there’s so many very, very, very rural areas of Finland that especially during certain times of the year can be physically really hard to access because of snow and things like that. And the results that they got from that program have been incredible.
And a lot of that is measured on like the Beck Depression Scale. So you know, people filling it at the start, but that’s how that’s how it’s done kind of not online as well. That’s how most psychiatrists evaluate their patients is some kind of variation of can you fill in this like, at scale, at the start of how you’re feeling and then filling one in at the end of how you’re feeling. That’s quite a common evaluation tool. But the results were phenomenal and there was a huge improvement in people and I know that like for me, I would have, I’m very tech savvy, very comfortable on Zoom, I work on Zoom all the time. But before the pandemic, if you’d said to me, like, OK, we finally got you to see a trauma based psychotherapist, would you like to see them online? I’d have been like, what? No. I’m not having, you know, I’m not talking about stuff that triggering and difficult on my computer. But then obviously the pandemic happened. And so I did have this new trauma focused psychotherapist and we had all of our sessions on Zoom and it was brilliant. I would much rather have had more people have access to therapists, because there are more therapists than they can see people online, than less people have access to therapy, because we only have in-person options.
But as the caveat I said at the start, I do understand there’s so many other complications with online, and like not having a space in your home that’s private, that sort of thing as well. But both those examples are being inventive and prioritising people and their recovery, not ideology, in terms of like perspectives of what mental health is, and not prioritising just kind of, well, this is what we’ve always done, this is the system, and we can’t look outside of it.
W: Let’s go to a short break, and we’ll be right back.
E: If you’re listening to this show on a podcast app, could you do us a favour? Could you pause the episode and see whether you can leave us a rating or a review? Could you tell just one or two friends about our show? It really helps others to discover us.
W: Jenny also asked, she says
“you also touched upon the impact the actual architecture and spatial organisation of these institutions can have on the impatient experience. I’d love to hear a bit more on this topic how would you spatially redesign mental health hospitals if you could?
E: How would I redesign mental health hospitals? Well, I suppose when I’ve been inside various different wards, either working or as a patient, usually working is where I would have seen more different types of mental health wards or visiting people. I guess I’m imagining a restructure that I see as reasonable based on the building they have at the moment. When architects are building modern like offices now, there are certain things that we just accept are built in because so many aspects of architecture make a huge difference to people’s wellbeing. This is outside of a mental health hospital so having lots of light is very nice. As soon as you create something, it’s full of corridors, rooms, you’re creating these boundaries which can’t help but seep into people’s mind and how they’re feeling when are there. So I’d have more open shared communal spaces, sort of optional quiet rooms, that kind of thing, and a way better access to the outside that is not monitored or gate-kept by staff, but people can go in and out, you know, as they want to. One of which – Will do you mind me talking about a slightly controversial opinion that I have, which is about smoking in hospitals?
W: Go for it.
E: So, this is kind of controversial and I don’t want people to think that I am advocating for smoking because I’m not. But it’s something, it’s a particular thing to do with physical spaces of hospitals. In the different hospitals that I’ve visited or stayed on or whatever, there’s been very different setups for how, what the policy is to deal with people smoking. And most of the ones I visited, worked on, or visited someone else at, and the one that I was on if you’re a voluntary patient and you’re allowed to leave, obviously until, as I think I explained in my, when I was recounting my experience on the ward that I was a patient on, at the end when they’d messed up my leave and then they told me I couldn’t go out for a cigarette because they then decided that I shouldn’t be allowed to go out on my own because I was too upset at the fact that they’d messed up my leave. Apart from that time, I could go in and out of the hospital. I was free to go out for a cigarette, I was free to go to the shop. I’d tell them, but I could go and do that. I think maybe I had to ask them to open the door. That was fine, you know it wasn’t a big deal. And people could go in and out for a cigarette whenever they wanted. And that was to the car park or whatever of the hospital. We didn’t have a garden or anything. The one that I visited my friend on that was in that rural setting there, people could go in and out of the garden as and when they wanted for a cigarette or fresh air or whatever.
The one that I worked on for like a year, the only outdoor space was a concrete three metre by three metre, if that, probably two, patio courtyard. So there were glass doors in the communal space, the where, the sofas, the art activity, the telly, the tea and coffee, there were glass doors and then a sort of, yeah, very, very small patio, which had nothing in it. So no plants, no art, no chairs, no anything. And that was the only place people could go outside. It was locked. So you could only go outside when the staff allowed you to go outside. They would aim to every half an hour have a staff member open it so people could go out for a cigarette. It would be open for five minutes, then they would come back in and the door would be locked again.
In my experience in practice, I mean, there’s a few things about that. One, the only outdoor space is just for smokers, which I think is awful. People need to be outside. They need fresh air, especially if they’re stuck in a very dingy ground floor, dark hospital with locked doors. You need to go outside. That’s not rocket science. No one is going to want to go out there because it’s basically just a smoking patio. As well as that, what would happen is because wards are understaffed and something might kick off and then you need more staff to go and deal with that. And then that means there’s no one to open the door to let people go out for what they’ve been sort of conditioned almost, strictly, to believe, in every half hour you can have a cigarette. And on the night shift, maybe every one hour you can have a cigarette, at these times when we open the door and let you out for exactly five minutes. So sometimes the staff will be having to deal with something else, maybe there’s not enough staff that day and understandably for them, for the staff, that’s like not the priority. You’re not going to leave someone alone who needs support in order to unlock a door and facilitate a five minute smoking break. But what then happens is you have a lot of people who have been conditioned into this very strict routine and then there’s no staff, there’s no way of opening the door. So you’ve got a huge group of people standing next to this door which opens onto a two metre by two metre patio in the middle, it’s like a courtyard, so there’s no way to escape from this courtyard, it’s just, it’s there, you can see directly into it. It’s almost like a pocket next to the communal room, all getting increasingly agitated because they want to have a cigarette. Increasingly agitated and angry because within this power structure where you’re conditioned into routines so strictly, your right to have a cigarette every half hour is a right that you will fight for in a scenario where you have relatively little other freedom of any kind. And so you look forward to those bits of your routine. So people get really upset, people get angry, and it’s like a domino effect. It’s just, it’s just chaos. And every week I was there, I’d just think like, why can’t you leave it unlocked? And I remember asking that, this lovely member of staff that I worked with, the inclusion recovery worker, I was like, this just seems to create so many more problems than not. And he was like, I know, but the hospital, I think had, like the overall hospital, so including all of the physical, the whole big hospital had been told to crack down on smoking sort of on the hospital grounds. And so there was no way that they were allowed to do it. And obviously I understand how awful tobacco is for people’s health, but I really strongly believe that if someone’s freedom is taken away to that extent, and if you’re in a position where you’re in a mental health inpatient ward, you are by definition almost having a pretty crap time. And I just think we should be doing whatever we can to aid people’s recovery. And yes, I do know that, you know, allowing people to smoke might seem that it may seem to go against the idea of recovery in any way, because it’s something that’s bad for your health. But a lot of people, so even with the addictive aspect of it, people get used to something like that as a kind of, that’s their alone time. It’s for them, they think, you know, people need it for all, it becomes a crutch for all sorts of reasons. And when you’re removing that and also then we’re adults, so you’re in a position where you’re not allowed to leave, you’re not allowed to go outside and you’re not allowed your daily crutch. I don’t know, I just don’t really, I’ve never really agreed with controlling people’s access to the outside, both from a kind of going out for a cigarette standpoint, but largely for like, a people should be able to go outside. And the amount psychologically that that does, to like not making you feel like you’re locked inside in a kind of prison environment is huge.
W: I mean, I mean, that’s what it’s about, isn’t it? It’s in some ways, to my mind, it’s not so much about whether someone’s being able to have a cigarette or not. It’s just whether people can go outside. I mean, that in itself, not being able to go outside or at least having such a strictly regimented sort of system behind that just feels.
E: Yeah, and I guess I fix on it, on a smoking thing just because that’s the reason, that’s the most frequent reason that I’ve seen people want to nip out for five minutes. You know, like that’s kind of,
E: it’s just sort of that’s the way in which that happens. But the way, and that’s how I’ve seen, I guess that’s how it’s been brought to my attention, how differently outside spaces are controlled. I think that’s more the point in the different hospitals that I visited.
W: I mean, crickey here, I sort of think if I don’t go out for my daily walk, which is really genuinely is like part and parcel of that process of mental health, self-management, I can feel it. I can really feel it. And so the idea that someone’s going to be locked away in an institution where they don’t have free access to the outdoor world, again, it goes back to what we said before, I can’t see how that is not detrimental to their mental health and actually completely
W: counterproductive to what they’re in there for.
E: Yeah. And my experience on a ward, when I was on the ward, would have been a million times worse if I literally was not allowed to access the outside apart from, you know, an assigned slot twice a day of 15 minutes or whatever. Because also, when it’s organised like that, when time and your access to the outside is organised like that, it means that everyone’s doing that at the same time. So you’re forced into only experiencing the outside in a kind of dense crowd of other people who also want to go outside.
W: Yeah, I mean that’s really interesting and a key thing to think about in the future design or refurbishment of mental health Institutions, is thinking about that free access to outdoor space
E: and also the light thing because like they there’s a relatively recent new mental health hospital building at St. Anne’s Hospital in London and they’ve prioritised, you know, like, and it’s a complex architectural thing, like these giant, giant windows that are like floor to ceiling, very high ceiling so there’s so much light in all of the spaces. There’s not this fixation inside on like dirty magnolia coloured beige everything. There’s a sort of calm kind of like gym exercise room as well that’s got exercise bikes and treadmills and a few things like that. There’s lots of different shared areas. And even in people’s rooms, there’s, it means they’ve got a great deal of light in a window. Like just that makes such a huge difference. And we obviously know that that makes such a huge difference because that’s an NHS hospital in Greater London. And so when we are given the option and funding to redesign these spaces, like we know what we’re meant to be doing. And you know, this doesn’t have to be an immense work. Like I’m sure everyone, most people listening have probably visited an NHS hospital in some capacity. And like how many times have you sort of walked down a corridor thinking, oh, bloody hell, this is grim. Uh, it’s really dark, vending machines empty, you know, that bit’s filthy, you know, like all of that sort of thing. It’s, it’s not just specific to people’s recovery in a mental health context. It’s just like we know it’s what we need. And in America, because there’s more kind of new purpose built facilities there, it’s always a big factor there as well.
And also, I think there’s such a huge thing where if you feel like someone has taken care and put thought into creating the surroundings around you, that makes yours, your value and your sense of self-worth, that gives you such a better base level for it, than if you’re put in like a filthy dark room, no pillow, really thin breaking camp bed. That’s where you’re put by a state that is saying that it’s looking after you. How does that make you feel about yourself? Well, they can’t be bothered to like, clean the wall or sweep the floor or wipe these stains off, whatever. You know, going into a space that is, makes you feel like you deserve to be in a nice place and you deserve to be taken care of and you deserve to have nice things around you and to be comfortable. I think that is enormously important.
W: Thank you Ellie and we’ll answer your remaining questions in a special episode next week, that’s next Wednesday, which will also be the final episode of the first season. We’ll then go on a short break and we will be back in the new year.
W: Please note that this show does not constitute medical advice and is not a replacement for seeking professional help. You can find signposting to support on our website anyamedia.net/LivelyMinds
E: Make sure you keep up to date with our shows by subscribing wherever you get your podcasts.
W: Take care and bye for now.