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00:00 Good evening and thank you all for joining us today for this webinar looking into the
00:06 NHS's psychiatric services. I'm Rebecca Thomas, I'm health correspondent for the Independent
00:12 and I'm joined by an expert panel today who are going to help us dig into some of the issues
00:18 that are really facing the NHS's health services, how we tackle that ongoing crisis. Those of you
00:25 that will be that have been following our coverage will have seen many of the stories which have
00:31 warned about an ongoing collapse in mental health services, the most recent being
00:39 a story uncovering around 20,000 sexual safety incidents reported across mental health services
00:50 and that was just the tip of the iceberg at the time. With us on our panel today I've got
00:56 joining us Alexis Quinn whose story actually kick started that investigation. Those of you
01:05 who haven't listened to it, her story is covered in the Patient 11 podcast which the Independent
01:14 published alongside Sky News. Her story is incredible, I would encourage you to listen
01:20 to it, she's going to give us a flavour of it today. Within her, across her work, Alexis is an
01:26 autism campaigner and she is an activist manager for the Restraint Reduction Network. We will get
01:33 into their work in a little bit today. But within that, within that network, Alexis is working,
01:43 Alexis and her colleagues are working in, we face an ongoing treatment gap within mental health
01:49 services which is causing incredible pressure, I hear those stories every single day. And
01:54 Professor Wendy Byrne who is joining us today, we're very familiar with those pressures,
02:02 she is an old age psychiatrist and she has been working since 1990, is it, in Leeds? And she was
02:10 also formerly president of the Royal College of Psychiatrists from 2017 to 2020. Our third
02:17 panellist today, Gemma Byrne, another Byrne, hi Gemma, she is policy and campaigns manager at
02:25 MIND who have been doing so much work to campaign on improvement of health services. Among that,
02:31 those campaigns, there's a campaign to improve standards within hospital care and also to push
02:39 through the vital changes within the mental health. In the next hour, we're going to, all of us are
02:46 going to discuss, as I say, those key challenges facing the mental health system, how they impact
02:50 patients, how they're impacting staff and as we head into a general election, what are the core
02:56 changes we need within our services to really meet this demand. I think a good place to kick us off,
03:03 Alexis, your story is so incredibly powerful and what you have put through is so unnecessary.
03:12 I wonder if you could give our listeners today a bit of a flavour of what happened to you and
03:15 what impression it left with you in terms of psychiatric care and inpatient services.
03:23 Yeah, I'll honestly say that not a day goes by that I'm not, I guess, haunted by the experience.
03:31 You know, I entered services as a teacher, you know, a former athlete and I thought that hospitals
03:37 provided care and treatment. So when I went in voluntarily, that's what I expected to get.
03:42 But when those doors shut behind me, it was like instant, you know, I transformed from having an
03:48 identity of a mother and, you know, a sister and a teacher, as I say, to being somebody that was
03:54 just seen as a patient really that needed control and restraint. So it was really, you know, it's
04:00 not an exaggeration to say, you know, when you're not allowed out, you've had that kind of freedom
04:05 and it's literally taken away as the door shut. It's kind of the stuff of horror movies. So I
04:10 guess over the four years, you know, I was transported up and down the country, sometimes
04:15 hundreds of miles away from home. I was in 12 different hospitals and in each one it was the
04:20 same thing. You know, I'd get really distressed, autistically distressed by the kind of noisy,
04:25 unpredictable, sensory driven environments and I would have a sensory overload and then six to
04:32 10 staff would hold me on the floor. They'd inject me with powerful antipsychotics and they'd lock
04:37 me in a room and the room usually just had like a mattress in it. There was no toilet, you know,
04:42 there was nothing. So sometimes I was eating, sleeping and defecating in the same sort of very
04:49 small space. But I think what's really important for people to know, because this comes up a lot,
04:54 is that I was somebody that really needed help. You know, I went to the GP and I was asking for
04:58 help. You know, I knew that I needed help. My brother had just died. I needed a plan, you know.
05:05 But so often my distress, and I was very distressed, was met with not with understanding,
05:13 but kind of brutality. So what I would say, you know, is that what I notice is that services are
05:18 incredibly stretched, you know, very understaffed. Staff are very bogged down, you know, nurses
05:25 especially, in paperwork. They didn't actually have the time to sit with any of us because often
05:31 I'd be detained with, you know, 18 men and women, you know, on mixed wards and we were all kind of
05:37 left to our own devices almost. So it meant that for me, a lot of my four years, I was spent in
05:42 what Baroness Sheila Hollins has come to term solitary confinement, which is very sort of social
05:48 and sensory deprived space, those locked rooms. And I was in there for many, well, I didn't know
05:52 how long I'd be in there. Sometimes it was hours, sometimes it was days, sometimes it was weeks,
05:57 sometimes it was months. You know, when you're not perceived and you're kind of in there for months,
06:02 you know, I often had the experience that I didn't know that I existed. Because if nobody
06:06 sees you and talks to you, you have to sort of know that you're there. So I think in terms of
06:11 the impact, Rebecca, you know, I'm regularly transported back to those times, you know,
06:16 sometimes during the day, you know, often at night. And, you know, you might think to yourself,
06:21 oh, you know, well, you know, it's those big restraints, you know, it's that solitary
06:24 confinement, you know, if we just get a handle on that. But it's not actually those big things.
06:29 It's actually the way you're sort of made to feel, you know, like every moment, every hour of the
06:33 day, you know, that you're not enough, that you need to do better, that you need to look more
06:37 normal, that you need to look less autistic. And that kind of fear and threat that you kind of live
06:42 with, you know, like you're nothing, like you're a piece of dirt on a shoe. And so what I would say,
06:48 you know, for me, certainly, because I was in there for so many years, is that I really lost
06:52 a sense of myself, you know, and, you know, no sort of self esteem, it was just all gone.
06:57 And that's the thing, I think, that's really hard to get over. And I don't know if I'll ever get
07:03 over it. But you know, this is about the state of services. And I would, you know, I would,
07:08 I would sort of say, you know, what service, you know, in some ways, because it can be,
07:15 it can feel very brutal. So I would just to finish, I'd credit the NHS with kind of saving my life,
07:21 you know, I really needed their help, I really needed their care, I really needed their support.
07:25 But it wasn't always the right support. And sometimes that that's really difficult.
07:32 Sammy, you do, through your campaigns, I mean, you you've been trying to really,
07:37 and it's called the Raising the Standard campaign, and improve exactly what,
07:42 exactly some of the things Alexis have told us, I mean, some of those details are quite,
07:48 they're stark. Can you tell us a bit more about what you're trying to do through your campaign?
07:53 What does Raising the Standards actually look for? And what I mean, when you hear Alexis' story,
08:00 what's your response to that in terms of how we need to change?
08:03 Thanks, Rebecca. And yeah, thanks, Alexis, for sharing your story as well. And I think,
08:10 when I think about how do you how you feel, when I or how I feel when I hear your story is,
08:17 firstly, just absolutely heartbroken, because it's the complete opposite of what the kind of care
08:23 you, as you said, like you'd expect in a hospital. And then it's quite bleak that also,
08:32 I don't feel surprised because I've heard this, I've heard the same experience from so many people,
08:41 which is just tragic. It's awful. So as you say, Rebecca, we've been campaigning to raise the
08:49 standard of mental health hospitals. And because of the steady stream of reports, news reports,
08:57 people's stories about unsafe and actually often abusive care when people are at their most unwell.
09:04 And people describe to us feeling unsafe, unheard, that their experience of mental health
09:13 hospitals was like that they were they were prison like. And I another thing I've heard a lot
09:23 through talking to people who have lived experience of being in a hospital for their mental health
09:27 is that they felt more traumatised when they left than when they went in, which is just,
09:34 I don't know, there aren't words really, because, you know, hospitals are a place where you're
09:42 meant to go to get better. And so just hearing that from so many people is just so awful.
09:47 In terms of thinking about then, you know, what does the government need to do? What does NHS
09:53 need to do? I think the first key issue is around staffing. We need to make sure that there's there
10:01 are enough staff, that they're consistent staff and that we have staff with the right mix of skills.
10:08 And because, you know, overworked, overstretched staff where they're consistently working in
10:16 conditions where there aren't enough staff and they're exhausted.
10:21 It's just not possible to provide really safe, good care in those conditions and to keep people
10:28 safe. But also, you know, in those conditions and also when you have a lot of agency staff that
10:35 are kind of constantly rotating, it's very hard to build those therapeutic relationships that are
10:39 also so, so important for, you know, kind of helping people to be well and to get better.
10:49 And, you know, that requires the right mix of staff and also consistent staff.
10:55 And I think then also when you if you have enough staff, if those relationships are better,
11:04 then and, you know, patients better, then it's you're more able to kind of verbally de-escalate
11:10 situations and less, you know, reliant on the use of restraint to, you know, address situations,
11:19 you know, just as Alexis was saying. In terms of other things that I guess the government and NHS
11:28 need to do to kind of improve safety, I think, again, really building on what Alexis was saying,
11:35 a key element of it is the kind of ward environment. So many people describe it as being
11:41 cold, bare, run down and that, you know, the lack of outdoor space. And I think we can't overlook
11:48 the impact that physical space has on our mental health. So, you know, we need spaces that
11:55 not only are safe in themselves, but actually enable us to be well, you know, spaces that are
12:02 therapeutic, compassionate, warm and even thinking about the soundscape and how, you know, triggering
12:09 particular sounds can be just that, yeah, the sensory overload as well. And that also impacts
12:17 staff morale as well, you know, so it's better for patients and it's better for staff. But I think
12:24 about 15% of mental health hospital buildings are older than the NHS itself. So we really need to
12:33 see funding going into, you know, modernising the mental health estate and actually, yeah,
12:42 kind of bringing those mental health hospitals up to the standard we'd expect. And I'll stop talking
12:49 for now because I feel like I've got, there's plenty more I can say, but I'll let someone else
12:53 speak. Wendy, I mean, on that point, as a clinician, you'd be very, very familiar with
13:00 working in the NHS estate and how that can impact, I mean, how you work and also how you interact
13:06 with patients, how your patients respond. Can you tell us a bit more about that?
13:10 Yeah, and I'd just like to talk a little bit about some of the things that have been mentioned,
13:17 funding and workforce, because obviously it's not just about the money and it's not just about the
13:22 numbers of people, about far more than that, but that's the basis that we start on. So you mentioned
13:28 I was president of the college a while ago, and during my time I campaigned for greater investment
13:35 in mental health and for expansion of the workforce. And we were successful in both these
13:40 areas. So over the past five years, spending on mental health has increased by £4 billion a year.
13:46 So it's not enough, we need more, but it has increased. We started from a low base,
13:52 but it has increased. And the workforce has grown. If you look at the whole workforce,
13:56 we've got 34,000 more people than we had five years ago. The total number of psychiatrists
14:02 over that time has gone up by 1,720. And we've got 679 extra psychiatry training posts over the
14:11 last four years. And I'm really proud of that because I've been working in NHS England on
14:16 recruitment and we're filling our posts as well. We used not to be able to fill them,
14:19 but now we're filling them. So we've done really well, but why does it feel so difficult still for
14:25 frontline workers? And I'm a frontline worker myself. Why does it feel so hard? And why do
14:31 patients and carers not get the service they deserved? One of the reasons is that demand
14:39 has also increased. So last year we had 5 million referrals to secondary mental health services.
14:47 That's a 30% increase from 2019. And the referrals for children have gone up by 143%,
14:55 so huge, huge rise. So people that need help aren't getting it. They're stuck on waiting
15:02 lists and they're not getting the care that they need. We also have, I believe, and not everybody
15:08 agrees with me, but I believe we have a problem with a number of psychiatric beds. I don't think
15:12 we have enough beds. So people who need to be admitted to hospital, people who need to be
15:17 detained, nearly everybody who's admitted to hospital nowadays is detained because it's so
15:22 difficult to get in, they're so ill. So these are really sick people. And often they're waiting in
15:27 emergency departments for days on end, waiting for a bed to come up. And then as happened to
15:34 Alexis, they may be placed in hospitals far from their homes. And we call these, as you know,
15:39 Rebecca, we call these out of area placements and they have gone up. So February, 2017, we had 644
15:47 of these placements. February this year, there were 825. So it's going in the wrong direction.
15:53 And these are very vulnerable people. We know that bad things happen to people in hospital
16:00 and they're away from their friends and their family. We know that people are placed out of
16:05 area and more likely to die by suicide after their discharge. And not only is this bad for patients,
16:12 but it's bad for the NHS. Last year, it cost the NHS £160 million. So we really, really need to do
16:20 something about this. We've come a long way, but there is a lot further to go.
16:27 It's interesting you mentioned that. We've long passed the target date to eliminate
16:32 out of area placements. And Alexis, I saw you nodding when Wendy mentioned
16:38 that sometimes contentious to say that we do need more beds. I'd be interested to get your take on
16:45 that as somebody experienced being in it, but is also working to improve the care with them.
16:50 Yeah, I mean, I think what I certainly see, both as somebody that's kind of, you know,
16:56 living with a, you know, as an autistic person, you know, that sometimes needs care and support
17:02 in the communities that it's just simply not there. And I know that many people, you know,
17:07 in terms of referrals that you were mentioning, Wendy, many people are experiencing the same,
17:10 right? There's so many people that are suffering now, because the services aren't timely, they're
17:15 not agile, they're not responsive. You get put on an 18 month waiting list for some therapy,
17:20 you might see a psychiatry if you're lucky, you know, within a month, or you get a holding
17:24 appointment where you see somebody so then they can bump you on to the next list. And so people
17:29 aren't entering hospital, you know, needing a bit of support, they're entering hospital in like,
17:36 unbelievable crisis, if they've not been criminalised in the process, you know, now
17:41 with right care, right person, you know, and so many now, barriers to people, you know, getting
17:47 that support that, that the beds are so few. I mean, in my area, two or three of our hospitals
17:53 have shut just since I've been discharged from hospital back in 2016. So you're looking at like
17:58 60 or beds being shut, you know, that have just gone. So we've got a real problem, both in in
18:05 patient settings now, but but also in the community. Yeah, and care should be delivered in
18:12 the community. I mean, if people can be looked after at home, that is so much better. If the
18:16 hospital beds have been closed, because they were empty, because everyone was getting good care in
18:20 the community, I would have been really happy. It's not that I think beds are great. But they
18:24 were closed really before the services in the community could cope. And then we have had this
18:29 huge increase in demand, which I don't think anybody quite predicted, which hasn't helped.
18:34 I think that's yeah, don't get me wrong, Randy, like just to jump in there, Rebecca, I'm not
18:39 saying I think this problem starts in the community, and it ends in the community. If we
18:42 get the community right, and we get the support right for people, we won't need beds. But it's
18:47 not a chicken and egg situation, we have to sort the community out first. And we've got all these
18:52 people sitting in emergency departments for days on end. I had a patient recently who spent two
18:57 days in A&E waiting for a bed. I mean, that's that's just and she was detained under the mental
19:02 health act. That is just not acceptable. Do you find different areas of the service, whether that's
19:09 emergency department, GP services, community service and inpatient services, do they work in
19:15 quite siloed ways? I mean, and do we need to? If they do, how can we start breaking it down? I've
19:21 come to kind of all of you on this, actually. Wendy, maybe you could maybe you could give us
19:28 a view of how you start breaking down those kind of separation between services.
19:32 Yeah, not, not easy. We know that if you improve the system, join up then healthcare is better. We
19:39 know that we need to keep patients right at the centre of it. If we all concentrate on keeping
19:45 patients at the centre of it, that that will help. There's a new there's new community transformation
19:51 work, which Rebecca, you've probably heard about, I'm hoping that that that will that that will
19:58 help. But over the years, I've seen the silos get worse. I think the trouble is, everybody's under
20:02 pressure. So the emergency departments are under huge, huge pressure. So then, you know, they find
20:08 it difficult when our patients get stuck there. Primary care is having a really terrible time,
20:14 GPs having a really difficult time, again, under enormous pressure. I think you've got a system
20:20 full of people who are overburdened, and then they get defensive and the patient suffers.
20:25 When I look back, actually, Alexis, you mentioned right care, right person.
20:31 And I think that's sort of an example of a policy that's been that's been being put through in a
20:39 silo. Gemma, maybe you can talk us through right care, right person a little bit. And
20:46 if I mean, should we be concerned about it? Yeah, of course. So right care, right person,
20:53 for anyone who doesn't know, is a policy that was introduced by the Home Office last year.
21:02 And it's based on a model of care that started up in Humberside. And it's about the police
21:12 withdrawing from responding to mental health calls. And what happened last year is that the
21:19 national UK government has said that they want to roll out this model across the country.
21:24 So it's about, yeah, police no longer responding to mental health calls unless there's an immediate
21:31 threat to life. And in some, in like, in a, in the theoretical sense, at mind, you know, we were
21:40 supportive of the policy in the sense that we know, a lot of the time, the police are not the best
21:45 people to be responding when someone's in a mental health crisis. But fundamentally, when you're
21:52 making changes to crisis care, and yeah, how people get support when they're in a crisis,
21:57 these things need to be thought through really, really carefully, because
22:01 the consequences of getting it wrong can be fatal. So, you know, that's why you need to take the
22:09 time you need to have the partnership working to make sure that no one is falling through the gaps.
22:15 And while in, you know, pockets of the country, we see right care, right person working,
22:21 working well, at the national level, it's patchy, and it's inconsistent. And it's a policy that's
22:30 been rolled out at pace. And that is that is one of the key concerns for us is, you know,
22:37 police forces are really being urged to kind of get this in place and step back as soon as
22:43 possible. And actually, as I said, you need to make sure we need to make sure that all the
22:47 partnerships at a local level are working. And a key element of this is also about funding, because
22:56 you can't simply withdraw millions of hours of police support, without then providing the funding
23:03 for the health services to be able to step in. So, in summary, in theory, a positive change,
23:13 but it needs to be slowed down, we need funding, we need better oversight to make sure that it's
23:19 actually delivered safely. >> Be keen, Alexis, a lot of the work you do
23:25 through the restraint reduction network, I imagine can focus on that patient at the point of crisis,
23:32 and you described to us, quite certainly the image of being restrained by five different people. I
23:37 went out on an ambulance ride once and I saw a patient restrained by five different policemen,
23:43 the ambulance had to call them, which was pretty awful to see. Are you working, have you seen any
23:51 projects that have successfully tried to have successfully been able to reduce restraint?
23:58 And particularly, police involvement? I mean, I think it's quite important to recognise that
24:04 we don't want police involved. >> No, absolutely. I mean,
24:09 they need to be involved when they need to be involved. And obviously, that's the most important
24:13 thing. But what I will say is that when people are exhibiting, you know, very distressed, you know,
24:17 crisis driven behaviour, that often, you know, it can present, you know, a danger to either person,
24:24 you know, or to other people. And so in those moments, sometimes that can be met with restrictive
24:32 practice. Now, clearly, what we want to be doing is providing the right support, you know, at the
24:37 point of crisis, so that people don't get into it, or even like long before. And a lot of, you know,
24:42 a lot of, you know, mental distress is starting, you know, when people are actually quite young,
24:47 and they're not getting, you know, the support in schools, and then they're not getting in social
24:51 care, and they're getting fractured into health, social care and education. And nothing as Wendy
24:56 was articulating is actually, you know, is actually joined up. So at the restraint reduction network,
25:01 we work with a strategy called the six core strategies, which looks at things like leadership
25:08 and data and, you know, workforce development. And this is proven, you know, it's it came about
25:14 in 2013. And it's proven to reduce restrictive practices and settings. So that might be the big
25:20 stuff, right? Like you see, like, like, such a confinement, which in inpatient settings at the
25:24 moment is referred to as seclusion and long term segregation, it might be physical restraint, as
25:30 you're saying, Rebecca, about where people are actually physically held, it might be chemical
25:35 restraints. So so many times, you know, I was forcibly injected, and then you know, you just
25:40 kind of so sedated that you're just kind of in a slumped over, you know, in a chair, sometimes for
25:45 hours, and sometimes even for days, you know, with with much stronger medications. So that's your
25:53 chemical restraints. Those are the kind of the sort of the big ones or the mechanical, you know,
25:57 the handcuffs. But actually, it's the smallest stuff I was talking about earlier is the other
26:02 ring, which we call cultural restraint, or it's the blanket restrictions, where one rules apply
26:07 to everybody, right? So nobody can have phone charges, nobody can have laptop charges, nobody
26:13 can have tampons, right? Nobody can have tampons, nobody can have sanitary towels, right, you just
26:18 have to free flow. So that that kind of stuff, surveillance, constantly being watched in your
26:25 bedroom sleeping, you know, or watched in the toilet by members of staff, sometimes of the
26:30 opposite sex, that kind of stuff, that kind of restrictive practice, which is your everyday, you
26:35 know, drip, drip, drip, that kind of seeps into your site that kind of degrades and kind of and
26:41 it can be it can be dehumanizing, actually, very dehumanizing. People respond to that, because
26:47 they're already distressed. And that's when you get that bigger, more obvious kinds of restrictive
26:53 practice. So what I would say is, you know, we want to be working on preventative, like Wendy's
26:57 saying, you know, we want people to be, you know, in their own homes on ordinary streets, you know,
27:02 leading ordinary lives, and being, you know, responded to, you know, and belonging, really,
27:10 in their communities. But where that doesn't happen, there are strategies in place that can
27:15 support that reduction. But if we haven't got the staffing, if we haven't got the training,
27:19 if we haven't got those basics in place, it's really hard to do that stuff.
27:23 All comes back to staffing, doesn't it? So often, everything comes back to staffing.
27:28 Wendy, working on an inpatient unit, how do you deal? How do you deal with
27:35 situations where a patient is coming to a crisis point, and when you've got stretched staffing
27:44 base as well? Well, the ward that I'm lucky in, that the ward that I work on, I think is well
27:50 staffed. They wouldn't say they were well staffed. But I think that they're well staffed. And I
27:55 think, I guess I'm kind of prejudiced, but I think it's a great ward. So we don't have, you know,
28:03 we do have situations, but we don't have a lot of situations. We really try not. It's really
28:08 interesting to hear Alexis talking about these restrictive practice. You certainly shouldn't
28:12 apply things to everyone. So it can't be that everybody can't have a phone, everybody can't
28:16 have a phone charger. That's, and the CQC says you must, you mustn't do that. So you know,
28:20 each patient, you have to look at them. You have to look at them individually. Also, I work with
28:24 the elderly. So maybe, you know, maybe we don't get so many really difficult situations. We do
28:31 get difficult situations, but maybe not so many awful ones.
28:35 Do you, working with the elderly, is there a different, is there a different approach needed
28:43 in terms of preventing the elderly coming to a crisis point where they need admission?
28:48 I'd be quite interested.
28:49 No, I don't think so. I think, you know, it's the same, it's the same as young people. It's
28:55 providing that support, making sure that they have an assessment, making sure that they're
28:59 treated for the illness that they have. I don't think there's anything so different.
29:06 I want to have a quick chat about advanced care plans, and that was a core part of the
29:15 mental health act reforms, wasn't it Gemma? And reforms which we are yet to see, and may not see.
29:26 I wonder if you could talk us a bit through about what advanced care planning looks like.
29:30 What are the most important things that we're missing out on in the reform of the mental health act?
29:33 Yeah, so we were very disappointed that the mental health bill wasn't in the King's speech back in
29:43 November, I think it was, after, you know, the government had been promising to reform the
29:49 mental health act for years. The mental health act is 40 years old, and it's out of date, and it's
29:59 not fit for purpose. And so it desperately needs updating, because people just simply don't have
30:06 enough say in their treatment and can't appeal treatment decisions. But there's also huge racial
30:12 disparities really kind of baked into the act. So black people are three and a half times more
30:20 likely to be detained, and 11 times more likely to be placed on a community treatment order.
30:25 So yes, advanced choice documents are kind of one of the reforms that we are looking for
30:37 in relation to the act. So that is where people are able to set out, you know, how they'd like
30:43 to be treated in the future, which helps to ensure that care and treatment is based on
30:48 people's wishes and their knowledge of what works for them, and what doesn't. But there are other
30:54 things as well that we want to see like community treatment orders being abolished, automatically
31:01 having access to advocacy, whether you're detained under the act or if you're a voluntary patient,
31:07 and improvements to make that work for young people as well, and for young people to be able
31:15 to have their voice and their rights strengthened. So overall, these reforms to the act would
31:26 strengthen people's rights when they're in hospital. But what we're really keen to emphasise
31:31 at MIND is that whilst we desperately need reform of the Mental Health Act, that alone is not the
31:37 silver bullet, it's not going to transform inpatient mental health care unless we have
31:44 the other parts that we've been talking about in terms of sufficient numbers of staff,
31:50 actually having therapeutic treatment when you're on a mental health board, having activities, the
31:58 physical environment being suitable, you know, all these things are crucial to actually improving the
32:05 state of mental health hospitals. And so Mental Health Act is absolutely, you know, reforming
32:11 that is absolutely vital, but it's just one part of the bigger picture. Actually on that point about
32:18 advocates, I've got a question, we will come to the Q&A later, but this question has popped up
32:24 for Josie. Alexis, were you offered a mental health advocate at any point during your care?
32:28 Yeah, I had lots of advocates and really unfortunately for me, some of the best ones
32:34 were in hospitals where I was then transferred to a completely different county overnight,
32:40 and I had sort of no idea. And so you can't kind of keep up with the same person. But what I did
32:47 find also is that, you know, the quality of advocacy really fluctuated depending on what
32:53 area you're in or what their expertise was. And also sometimes I didn't feel they were massively
32:59 independent. Some of them are very much sort of in the pocket of the hospital. And there was kind of
33:03 where there were, you know, really toxic cultures, you know, what the CQC would call closed cultures,
33:08 that kind of bled into lots of the different extra services, I suppose, like advocacy,
33:14 which were involved. So yes, can be really helpful. I think they're really vital.
33:18 But very, very fluctuating in terms of their presence and quality and
33:24 ability to move, I think, with the way that the system responds in terms of moving people out of
33:32 area, etc. It's interesting, you mentioned the big kind of the toxic closed culture,
33:38 and that comes up a lot. Obviously, I'm a journalist, so I only hear the bad news. But
33:43 it's, it'd be good to discuss it. How do we really start to unpick that and start to move past that
33:52 in the current climate? I mean, it can't all be just that it's stressed, it's stressed off,
34:00 stretched stuff. If didn't really start to kind of unpick that. And get your take. I mean, what's
34:07 a good starting point for a good culture within a community or inpatient service?
34:14 Oh, I thought if I would just start, but what I would say is I was in, as I said, I was in 12
34:20 different hospitals across the country. And I could feel instantly when I walked through the
34:24 door, how it was going to be, you just get this feeling, you know, and some of the worst cultures
34:30 were like a pressure cooker, you know, you are waiting for those alarms to go off and staff were
34:35 tense, you know, ready to react, because often, you know, what we what, you know, I think,
34:39 many years ago, when we were thinking about restraint, we were thinking about the aggression
34:44 and violence of the person, you know, and we were thinking about, you know, what is really terrible
34:48 for staff, but it's almost like it's flipped. And what you find is that staff are actually
34:52 massively traumatised, also by the kind of workspaces where they're having to constantly
34:57 respond, they can't get on top of people's distress, they can't provide the right support,
35:01 maybe, maybe the whole shift is agency workers, and they've not got a clue what anyone's name is,
35:07 right, let alone, you know, what things might might be really difficult for them,
35:10 or what things might trigger them. And so you get this very, very reactive kind of culture.
35:15 And what you'll find then is high levels, you know, of blanket restrictions, where those rules
35:20 are applied to everybody, you can only watch this TV channel, right, we're not changing the channel,
35:24 we've not got staff to change it. Or you can only go out for a cigarette at this time, because we
35:28 haven't got staff to take you out, or we can't open the doors, it's on a schedule. And that's,
35:33 you know, I think where you see, you know, lots of restrictive practice and toxic cultures,
35:38 where they just want to shut the doors, they just need to get past the shift, they just need to get
35:42 to, you know, whenever the shift ends. And, and you will see really, really high levels of
35:48 restrictive practices in those cultures, and not much interaction with with families, which,
35:54 of course, should be front and centre, if the person wants them to be.
35:57 It's interesting that that that idea of a pressure cooker comes up a lot. And Wendy,
36:05 I'm slightly going off piste here, but in terms of involving families,
36:10 in treatment decisions, and bringing them along, supporting patients, how important is that?
36:17 Really, really, really important. More important, because I work with the elderly,
36:22 and I guess it would be the same if I work with children, because most of my elderly patients
36:27 have family members who are supporting them, often to an incredible degree. But I always involve
36:33 families, we have a meeting every week, that the patient where the patient comes in, and the family
36:38 members, as long as the patient allows it, and nearly all of them do, the family member will
36:42 be invited to. And it's interesting how often the family members know about things that we
36:48 don't know about, even though, you know, we spent the week with the patient.
36:51 But it'll be the family member that will actually tell us what's really going on.
36:55 So yeah, I said I couldn't do my job without involving families.
37:01 Gemma, what do you hear from the campaigns you've been doing about how families can
37:08 want to be involved? Okay.
37:10 I think I've just got to agree with what, you know, Wendy and Alexis have said about how important it
37:20 is. And I think that's where the issue of out of area placements comes in as well, that, you know,
37:28 there's so much higher, there's a much higher risk to people, you know, people taking their own lives
37:37 when they're moved far out of area where they don't have that family support and access. And
37:47 I think also it's about respecting the patient's right and the patient's
37:54 kind of choice in terms of seeing family and loved ones when, you know, sometimes
38:01 their family members could be part of what causes a lot of distress. So it's kind of making sure
38:09 as well that we're thinking about kind of ultimately centring care around the person,
38:16 what they need, what they want. We've talked a lot, we focus a lot on inpatient care and hospital
38:23 care today. And I always get people saying it's not, I mean, most of the care is delivered in
38:29 the community. And there is a lot to think about in terms of mental health around societal changes
38:37 and wider issues beyond the healthcare system. Issues I was talking about today, issues like
38:42 housing, for example. I'd like to have a bit of a chat about what are the most important things and
38:51 important challenges which actually are affecting our mental health system outside of that. Gemma,
38:58 I see you nodding away. There are a few things that come to mind.
39:04 Yeah, nodding away because it's kind of the two things we talk about most at Mind is kind of
39:13 the mental health services and the system, but also how you prevent people experiencing
39:18 mental health problems in the first place and the kind of social determinants. And, you know,
39:23 so the first one that comes to mind is poverty. There's just such a strong link between poverty
39:30 and mental health. And it's a it's a two way link. You know, if you're really struggling
39:35 financially, you're more likely to struggle with your mental health. And if you struggle
39:39 with your mental health, then more likely to struggle financially. So it's it's a cycle.
39:45 And, you know, that's been quite front and centre of our minds recently because of
39:52 a lot of the government announcements that have been happening lately, talking about
39:58 people with mental health problems and, you know, Fitnotes, access to benefits, kind of implying that
40:06 people who are experiencing mental health problems don't need that support or
40:13 that kind of financial assistance. And we've really seen the impact in terms of the response
40:20 that we've had on social media and through our helplines of people being really, really
40:26 affected by these announcements because they're really quite terrified about, you know,
40:32 if my financial support is taken away, I don't know what I'll do. And so it just I think that
40:39 just demonstrates really the link between poverty and mental health and why we really need to make
40:46 sure we're addressing things that have been evidenced for so long as being key social
40:53 determinants of mental health. And so we're not going to make a big dent in the kind of prevalence
40:59 of mental health problems unless we really tackle some of those social determinants. Another one,
41:06 another kind of big issue we need to tackle is around discrimination and racism and the impact
41:15 that racism has on people's mental health and then the treatment they get from mental health
41:24 services, which, again, also often isn't culturally appropriate and tailored to people's needs.
41:31 And so as a society and as a system as well, we're letting down
41:41 people from racialized communities in terms of their mental health. So I have a long list of
41:47 things that contribute to mental health that I'd like to tackle. But yeah, they're the two that
41:53 kind of come to mind first. Wendy, you've done quite a bit of work through this through previous,
41:59 through Equally Well and your previous work there, which for those who don't know, that's
42:08 the Centre for Mental Health kind of work to reduce inequalities and that really stark mortality gap
42:14 we have for those with severe mental illness. That's right, people with severe mental illness
42:19 are likely to die 20 years younger than someone without, which is appalling. And that's not
42:25 really, that's not really got better as life expectancy has improved. The gap has remained
42:32 lots of reasons. The illnesses themselves cause physical damage. There's the medications that
42:38 we use. I mean, the medications do work, but I wish we had ones that didn't have such side effects.
42:44 So that's a problem. Poverty, we've talked about poverty. If you've got severe mental illness,
42:49 you're much more likely to live in poverty and then you're less likely to live as long. You're
42:54 less likely to come forward for screening programs, all sorts of things. So, yeah.
43:02 Alexis, I'm curious with your work that you do around campaigning for autism,
43:07 outside of the hospital environment, what are some of the inequalities and challenges you think
43:13 we need to fix within social care, community services? Well, typically the difficulty starts
43:22 for autistic people and people with learning disabilities when they're very, very young
43:26 and their parents take them to the doctor and there's something wrong with my child.
43:29 And then nursery services, nursery places aren't given because they're excluded from the settings.
43:35 You then get into a really difficult cycle, often in schools where children are treated really badly
43:41 as if they're very, very naughty and you get a lot of suspensions and sometimes exclusions or
43:47 having to be schooled, again, quite far from home and taken into residential settings.
43:52 For this community, we know that 90%, almost 90% will also have a diagnosable mental health
43:59 condition like anxiety, depression and post-traumatic stress. And that's not because
44:05 it's inherent to the condition of autism or learning disability, but it's due to the way
44:10 the person's being treated by society. So they're called weird, stupid, naughty,
44:16 this constant, constant messaging, not being welcome in supermarkets, you can't go to the
44:21 trampoline park, not invited to children's birthday parties. And so this kind of social
44:27 exclusion that happens creates a lot of loneliness and isolation. So the population's nine times more
44:31 likely to die by suicide. And the life expectancy, as Wendy's saying, very similar also for the
44:38 autism and learning disability population. But in terms of inpatient inequality, it's quite stark.
44:44 So inpatients for autism and learning disability spend an average of between five and six years
44:50 declined in settings compared to 27 days for the general inpatient population. So it's really stark.
44:59 Huge. I've been hogging the conversation and we've got a lot of listeners that actually want to
45:08 ask questions and speak with you all. One of the questions that have come up, and
45:14 we've talked about it very briefly in terms of this soaring demand, huge increase in children
45:20 needing to access services. Jamma, do we have any idea if there's a driver for this?
45:28 If there's something particular driving it post-pandemic?
45:31 Yeah, well, as you say, there's been a huge increase in the prevalence of mental health
45:38 problems among young people. I think it was in 2017 that one in nine young people
45:46 experienced a mental health problem, and now it's one in five. So that really, for seven years,
45:52 that is really quite shocking. So I think what's behind that, there's a number of things.
46:00 We can't ignore the pandemic as a key kind of driver in terms of young people who are spending
46:07 their kind of formative years in that pandemic period where they're not getting the same social
46:16 interaction with their friends. The trauma of seeing the actual situation and lots of people
46:23 losing loved ones, that all has a huge impact. And then obviously, then the kind of concern about
46:31 the impact that that's going to have on their futures in terms of their education and then
46:36 what that means about jobs, but also the cost of living crisis. It affects young people too.
46:43 They see the impact it has on their families. And then couple that with the climate crisis, with
46:51 international conflict. There's a lot that's going on, and it's not particularly shocking
47:02 to think that that would have a huge impact on young people's mental health. I think when you
47:07 pair that with the fact that for young people, far too often they can't get support when they
47:13 first start to experience mental health problems. And that's so important because we know that 75%
47:19 of people who experience mental health problems were first experiencing symptoms by the age of 25.
47:28 So, it's so important to intervene early. And we know there's so much evidence that that can be
47:34 just so impactful, but that support just isn't there. And then young people become more unwell
47:42 because they're not getting that support. And then when it comes to trying to get support from CAMHS,
47:48 the system is so, so stretched that it's often just, people are sent away because they're told
47:55 they're not unwell enough. Even when they're really, really very unwell. But there are other
48:00 children and young people who are even more unwell, and you just have a system that just
48:07 simply can't meet that demand. So, I think that also is kind of perpetuating the situation.
48:12 What are you seeing on the ground, Wendy, in terms of, are you seeing soaring demand?
48:17 Is that materialising? Yeah, everybody who works in mental health services
48:23 sees soaring demand. And that's why, you know, when I come in at the beginning with all these
48:26 figures about how many more workers we have, how much more money we're spending, people on the
48:29 front line say, what are you talking about? Because it just feels harder than it's ever been before.
48:35 All the things that Gemma said about the demand, I'm sure are true. And also, I think there's been
48:41 a reduction in stigma. So, people will come forward for help when they wouldn't have done
48:45 in the past. But even so, it does worry me, the rates of mental illness and children.
48:53 I get, because I was present, I get so many messages from people who have children who are
48:58 unwell, and they're desperate, desperate for help. Even if you want to go into the private system,
49:02 you can't get help. It's worrying. And I just wonder if there's something else driving it,
49:09 but I don't know. That's a slightly related question. I mean,
49:15 if we talk about this in terms of children, are we over-medicalising mental health? Or is that
49:22 a myth? Do you think? Well, the people that contact me about their children sound to me
49:30 really, really unwell. Children cutting themselves, children taking overdoses. I mean,
49:36 I think you have to treat that as a real problem. Children's services, when people do get into
49:43 children's services, and before they get into them, some of the things that are set up around
49:50 that, it is mostly psychological treatment anyway. It's actually quite unusual for children to be
49:55 given medication. I've got a question here. We're coming back to children, I realise that.
50:05 I'm not a child psychiatrist at all.
50:07 We talk about this transition from child to adult services.
50:20 And I've got Christine Stubbs here. Why is that transition so difficult? What sort of
50:28 measures can we do to better that transition? Come to Wendy and then Alexis, your opinion.
50:39 So yeah, we know it's a difficult transition. I mean, it's hard for people changing services.
50:47 I see the same thing when people get to 65, when they transition from what's called adult to what's
50:52 called old age. It's difficult. If you know a set of people and you've got somebody who you've
50:58 actually built a relationship with, it's difficult to transition to a different service. And children's
51:03 services are set up in a completely different way from adult services as well. People have looked
51:09 at various solutions. There are some places that run a sort of crossover service, kind of 14 to 25.
51:16 That's been successful in some places. I haven't seen a perfect answer.
51:20 Alexis, through your work, do you see any good models or poor models when it comes to
51:27 transitioning between adult and child? Yeah, I mean, I've heard it being called a
51:32 cliff edge. Nobody should be falling off a cliff edge. I just don't know what's going on here.
51:38 And I think it really is to do with the fracturing of services and how people are kind of divided up
51:44 into what's available rather than people being the very centre of what's needed. People's needs
51:49 don't change just because their birthdays come. So I really think that actually what we need is
51:54 a reorganisation of the way that we support services. And as Wendy said, where you have
51:58 got the kind of 14 to 25, that might be a kind of model that works. But for me, I'd like to see it
52:03 more integrated between education, health and social care. And just going back to your previous
52:09 question, I mean, I don't want to go backwards, but as a teacher, I think a lot of it's been the
52:14 funding cuts in schools and the way that children are communicating with one another, kind of
52:19 increasing those pressures. And you see that too, bleeding into the services as well and the kind of
52:25 difficulties that people are coming with and their access to certain content kind of being played out
52:32 in settings as well. And again, that transpiring then and leading into kind of restriction and
52:38 restrictive practices. That's an interesting point in terms of as a teacher and within the
52:43 school environment, what is actually kind of helpful that we're obviously rolling out school
52:47 mental health teams? I mean, the coverage on that, I think is perhaps not what it says it is, but
52:52 what is helpful within that school environment, do you think?
52:55 Well, I think as a teacher, you know, it's gone from a situation where, you know, you knew all
53:01 of the kids in the school, you had an idea of the things that they might like and that they don't
53:05 like. And now you get schools of 2000 and you're lucky if you can remember the top five and the
53:10 bottom five in your class. You know, I'm having to sort of make up reports, you know, cut and
53:14 paste jobs because I really just don't know. Not because I don't want to do the best by the kids,
53:18 but that's because how it is, you know. And you're seeing with the peer groups as well,
53:21 the way that children are communicating with one another. It's this constant sort of fracturing,
53:26 I think, of deep and kind of meaningful relationships and children experience the
53:30 things of belonging in their school and with teachers and within their communities. And you've
53:35 got, I think, kids more isolated than they've ever been, connecting digitally rather than actually
53:41 in person. So I, for me, it comes down to relationships, you know, those deep, meaningful,
53:46 loving relationships, you know, therapeutically appropriate, but loving relationships that you
53:52 can have with people which are really diminishing.
53:57 We can talk about that interesting digital, the digital sphere. I've got a question here
54:03 about the role of social media in mental health. That's a bit of a bomb question.
54:08 But I wonder if we could discuss that a little bit. Gemma, do you see in your policy
54:17 claims, is social media a good thing, but mental health is a bad thing? Are we damaging
54:26 generations of children? I think, yeah, it's a really complex issue because
54:32 you can see both sides of it, because, you know, I think a lot of us know the ways in which
54:41 social media can be really damaging, even, you know, things like, you know, body image or
54:49 expectations. There's just so many elements in which, you know, social media can be really
54:55 damaging for your mental health. I think where we struggle is that we know it can be really
55:00 helpful for some people and it can be a really vital kind of place for peer support.
55:08 So at Mind we run a kind of a peer support service. And so we know the impact that
55:14 kind of being able to connect with people that experience the same thing as you
55:19 and the impact that that can have. And even I know there's a lot of debate about, you know,
55:27 access to social media within inpatient settings. And again, the similar kind of it's
55:34 a very complicated debate because, again, I know that it can be a very isolating experience being
55:43 in an inpatient ward, especially as a young person where you're just in a completely different
55:50 situation to, you know, all your peers. But actually being able to connect through social
55:56 media with other people who experience very similar things can make that less isolating.
56:03 Having said all that, there's a lot of dangerous content out there on the Internet.
56:09 And so it's balancing that, not, you know, not kind of suppressing all that peer support,
56:18 but making sure that we're, you know, protecting people from that really harmful content as well.
56:25 I've got a few minutes left, so we have a snap general election. So I want to come to either
56:35 all three of you. I'm talking to Kirstarma and Rishi Sunak. You're around a table with them.
56:41 What is what are your top, top three issues that you would want them to address when it comes to
56:51 the mental health system? Alexa, I'll come to you first. Don't have to say three, but just say,
56:56 just give them a number. Well, I would just like to say they really need to invest in care and
57:02 support in the community and services have got to be far more joined up. You know, my care probably
57:08 would have cost five thousand pounds when I asked for it when I went to the GP. They spent millions,
57:13 literally millions, you know, seven hundred to fifteen hundred quid a night on some of the
57:18 beds that I was in, you know, on literally traumatizing me. Lifelong trauma, as Gemma
57:23 was saying, you know, people come out more traumatized than when they go in. So and people
57:28 don't get the care they need in the community because it doesn't come from that funding pot.
57:32 Something's really got to be done about that. We've got to be we've got to be far more joined up.
57:37 And in terms, I think of of of inpatient care, you know, I would agree with Wendy that sometimes
57:46 people do need support and they do need to that does need to be hospital beds. So I don't think
57:51 this is about counting beds. Our aim shouldn't be, for instance, for the autistic population
57:56 to reduce bed numbers by 2000, which is what they've kind of set at the moment. If you get
58:01 the care in the community, right, those bed numbers will come down anyway. So that's probably my
58:06 probably my things. Oh, and the Mental Health Act, of course, the Mental Health Act needs reformed.
58:10 Wendy. So I want to keep on doing the work that I've been doing, expanding the workforce,
58:17 particularly psychiatrists. I mean, we have we've made a massive expansion in psychiatric
58:22 training. I really want to go on being able to do that and to keep to keep expanding.
58:26 That's my one. That's perfect.
58:31 And, you know, since Wendy gave one, maybe I can give five
58:38 because we have five recommendations that we want in all the parties manifestos.
58:45 My colleagues would not be happy with me if I only mentioned three.
58:48 So, you know, it's yeah, it's what we've been talking about tonight, improving inpatient
58:54 mental health care alongside that, you know, introducing reforms to the Mental Health Act.
58:59 As I've also talked about that early intervention for young people, rolling out a network of early
59:06 support hubs. And then on the kind of poverty side, there's making benefits assessments work
59:12 for people with mental health problems and modernising sick pay so that people can get
59:17 support when when they're not well.
59:19 Very well. I hope you're listening. Maybe we'll see a few announcements in the next coming weeks.
59:28 A huge thank you to the three of you. It's been a fantastic discussion.
59:34 Thank you to everybody that joined.
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