Transcript: The Mental Health Act and Me

This is a full transcript of The Mental Health Act and Me as first broadcast on 16 January 2021 and presented by Beth Rose

BETH -Hello, I'm Beth Rose, and you're listening to BBC Ouch. After three long years the government has released its recommendations on how to modernise the Mental Health Act. The key areas include putting the individual at the centre of their care, and making the system less discriminatory towards black people. They might sound like obvious expectations in 2021 but the Act was passed in 1983 and is out of step with the way we think about mental illness today.

I've never been detailed under the Act myself, but I'm interested to know what that experience can be like and what should be done to improve it. Earlier I spoke with Ashley, a young black woman who was sectioned under the Act twice in 2018, and I'll be dropping in her contributions throughout this podcast, but with me on the line is Raf. Hi Raf.

RAF -Hello.

BETH -You were sectioned in your late teens and have since worked with the CQC and Cygnet Health, advising on and inspecting mental health units to ensure quality of care is maintained. You're also involved with the mental health charity, Rethink, and chaired one of the committee groups which came up with the new recommendations. First off, some basics, Raf. You've been directly impacted by it, but what is the Mental Health Act and what does it do?

RAF -The Mental Health Act is a framework which enables the care and treatment for people experiencing mental distress, usually for the person's own safety and/or for the safety of others.

BETH -So it's kind of the serious end?

RAF -Absolutely. I mean, a lot of people detained under the Mental Health Act do not want to be in that situation, although, dare I say, on many mental health wards there are also many voluntary service users.

BETH -What led to your detention under the Act?

RAF -I was experiencing quite a lot of kind of psychotic episodes. I was involved with, like, gangs and stuff in my early teens, and ended up committing an offence on a friend that I became paranoid on. I ended up in a young offenders institution on a healthcare wing where you are technically classed as a patient and ultimately I was transferred to a medium secure forensic service from around 2010 to 2015. Ultimately I was discharged and started working with the Care Quality Commission inspecting services nationally. And that was through my frustration with the system.

BETH -So going back a bit, you were sentenced to six years for grievous bodily harm and false imprisonment. Is that correct?

RAF -Yes.

BETH -And you mentioned you were moved to a forensic mental health unit. What is a forensic mental health unit?

RAF -So a forensic mental health unit is a place where you're basically treated for mental health and/or learning disabilities, following an offence. However, sometimes people can end up in a secure mental health service without committing an offence. A lot of the time it can just be dependent on risk.

BETH -Tell me a bit about when you were experiencing the psychosis. How did that manifest?

RAF -A mix of environment and, I guess, cannabis use, creates the perfect cocktail of paranoid delusions and thoughts. And a lot of the time it's just about the distrust of people around you, even friends, family, something that was probably exacerbated by the use of solitary confinement and my detention under the Mental Health Act. The worse psychosis I experienced was actually, ironically, in hospital.

BETH -Do you think that was triggered by something?

RAF -Yes, absolutely. I mean, the use of solitary confinement, for example, is a recognised form of torture. Research shows it actually exacerbates psychosis and it's something that is often used on young people, particularly from BAME backgrounds. Even in mental health units later on I experienced what is called segregation or de-escalation rooms, which again, is just another fancy term for solitary confinement.

BETH -Well, we should like to make clear that the fact you found yourself in these rooms, in solitary confinement, or de-escalation rooms, it wasn't a direct link to your prison sentence was it? It was at the time how they were dealing with your illness?

RAF -Yes, absolutely. So a lot of the times you can find yourself in one of these situations just from challenging the system as such. I mean, remember, you can even be put in solitary confinement sometimes for, like, raising your voice, but this is something that is very subjective. So imagine you're having a disagreement with a member of staff and you could be seen as being distressed, you could be taken to de-escalation rooms or segregation rooms. Mental health services don't use it as much anymore, really because of the scrutiny from the CQC.

BETH -And what is solitary confinement like? Paint a picture.

RAF -There's not much of a picture to paint really, in the sense that it tends to be a mattress on a floor. You're quite lucky if you get a window. Things have advanced a little bit more in recent times in terms of access to fresh air and such. The segregation units tend to have a separate garden access. Most of the time you're not even allowed things like books or anything that could potentially be used to harm yourself or others.

BETH -And how long would you stay in that situation?

RAF -I remember I was in solitary confinement for almost a year.

BETH -Wow. That seems astonishing.

RAF -It is quite unusual in this day and age. One thing I would say is that mental health is not all doom and gloom and that we've come quite a long way in a short period of time. I mean, even when I was a service user I never would have thought I would have seen people on wards even being able to have access to mobile phones, which is the norm these days, and that's happened in such a short period of time.

BETH -And you said sometimes you'd find yourself in these situations because you were challenging the framework in which you were being treated. What sort of things would become really frustrating to you and then would be, I guess misconstrued as aggression perhaps?

RAF -We call it within the sector something called restrictive practices, and these are in essence rules which don't really have much of a standing. You could be watching a film for an hour and a half, there's ten minutes left, but because it's hit 11 pm the TV has to go off. And you can imagine a room full of vulnerable and distressed patients, it can rapidly escalate as to why that last ten minutes can't be watched of that film.

So, like, I've seen so many incidents just happen over that one example, or if you're on the phone and protected time comes in, so if an activity starts and you can no longer be on the phone, you know, you could be speaking to your mother, for example, and the staff hang up the phone. Small, weird rules that can quickly escalate into a physical situation where medication can be administered, or you can find yourself in solitary confinement.

BETH -Ashley?

ASHLEY -I was first sectioned in 2018. I was experiencing delusions, I felt quite helpless and frightened and just confused because I'd come back from university and I just started feeling paranoid and started feeling like my parents were being controlled by other people. They tried to reason with me but I wasn't paying attention, I was really scared. I was screaming actually, I was showing some signs of aggression, so after a while they called the ambulance. The paramedics came and looked at the situation and saw fit to section me under the Mental Health Act.

When the paramedics were in my house I was quite worried because I didn't know why they were. I felt like they were talking mainly to my parents. I think there isn't enough inclusion of the service user, the individual who's actually going through the experiences that can be very traumatising. When I was in hospital it wasn't really well communicated to me about what medication I was taking, but they were communicating that to my parents, and they weren't in the hospital with me, so didn't have much of a choice about what type of treatment I would receive.

BETH -And that really had, well some of these recommendations, which is that you should put the person at the centre of their care in terms of treatment and medication, back to Raf, did you feel you were at the centre of your own care?

RAF -Towards the end I did. It's really fortunate today that we involve people who actually have lived experience. An expert by experience is someone who has direct lived experience of using or caring for someone who has used health and/or social care services. You know, the independent review of the Mental Health Act, for instance, involved a variety of different stakeholders, including community leaders, but most importantly patients themselves and family carers. And I think that's what's caused the kind of revolution that we've seen in recent times, because people with lived experience themselves are best able to articulate the change that are required within the system, which is just better for society generally.

BETH -How long were you experiencing mental distress before you were moved from, you know, the young offenders into a specialist unit?

RAF -I believe it was nearly two years. So one of the issues that we highlighted during the independent review is specifically the experience of how people from BAME backgrounds access mental health support. And you will see that there's a disproportionate amount of, specifically, young black men who access mental health through the criminal justice system. And I guess the argument is is that perhaps if there's more of a focus on early interventions and different routes of access to mental health care people wouldn't be going through the criminal justice system unnecessarily.

BETH -You chaired the Asian and Other Ethnic Minority Topic Group. How did you end up on that?

RAF -As I've said, after I was discharged I joined the Experts by Experience group at the Care Quality Commission and took part in over 115 inspections.

BETH -Wow, that's lots.

RAF -So I was able to kind of have a good perspective from literally both sides of the fence, if you like. I was approached by Professor Sir Simon Wesley to take part in the review.

BETH -And he's the guy that headed the review as well, isn't he? He's the big boss.

RAF -Yes, he's a very passionate chap. I was very humbled, because it is quite a sensitive topic and having a conviction is really difficult when you're trying to kind of rehabilitate into society because it's a barrier to all of the things that make you a better or a meaningful citizen. So, for example, employment and relationships, having a diagnosis of a mental health condition only further adds to that stigma. So kind of having both, you can imagine how marginalised and underrepresented people from forensic mental health backgrounds are. A lot of the issues we have long known about. So, for example, the disproportionate nature of use of force, for example, against people from BAME backgrounds within mental health services, access to treatment.

BETH -And what's your background, Raf?

RAF -So I'm originally North African, so I come from an Arab background.

BETH -So you really had this experience as well?

RAF -Yes. No, absolutely, so one of the things I often relate back to was the way my religious affairs were kind of supported in mental health services which wasn't the best experience for me. My prayers, for instance, were connected to hallucinations or psychosis, when in fact they were just the same as almost a billion other people around the world.

BETH -How did that confusion come about?

RAF -Picture yourself being an agency nurse and you're on shift and you're going around doing the observations, looking into people's bedrooms, you might not have really come across someone from, for example, a Muslim background and you look into someone's room and you see them doing a prayer, getting up and down and reciting verses to themselves. If you don't have that cultural awareness of someone doing that five times a day as part of their religion and it's in the context of a mental health ward you can imagine how it can be misconstrued as to someone speaking to themselves or having a kind of mental health crisis. And that's something I kind of experienced and something that stuck with me.

BETH -So what happened that day when the agency nurse is in and you were doing your prayers?

RAF -So I was kind of, like, offered medication, and fortunately my psychiatrist also happened to be from a similar background. He kind of said he should be given some medication as well in that case. So it does feel like sometimes you can be looked at as a piece of paper as opposed to a person. I mean, a key part of recovery journeys within mental health services is that therapeutic relationship between the service user and staff, and if you're working alongside people who you don't really know or don't really know you as a person and particularly if there's not that cultural awareness then these situations can occur quite often.

BETH -And at that time, just to check, you were offered the medication. Did you have to take it or were you able to explain your situation?

RAF -Well, fortunately, because I had the capacity at the time I was able to wait until the review in which obviously the psychiatrist took my side. But for many people who don't have capacity it could be forced upon them.

BETH -There are some really shocking stats when it comes to people from minority ethnic backgrounds. For instance, black people are more than four times more likely to be detained under the Act. So in 2019 to 2020 there were 321 detentions per 100,000 population for people who were black or Black British. That compares to 73 detentions per 100,000 for white people, which is a huge difference. Let's hear from Ashley again.

ASHLEY -I would say it may even come across worse for young black men, as sometimes I feel like the way the media portrays black men or the way society thinks of them is that they're more aggressive when that is not true. And I think personally maybe that may have played a part, that I may have come across aggressive when I was sectioned.

BETH -One of the plans is to provide these culturally appropriate advocates so that patients from all backgrounds can be supported through their care. Raf, do you think that will help the situation?

RAF -Yeah, most certainly. I mean, if you are in, like, one of the most vulnerable times in your life, one of the most important things that you would need is, you know, access to advocacy. The idea of culturally appropriate advocacy is, I guess, having someone who understands your kind of cultural values, your language perhaps, can make that difference in being able to articulate your concerns and wishes for your kind of care and treatment, and ultimately will really support people's recovery journeys. Involving people in their care is the best way of ensuring that people have meaningful recovery journeys, and I guess that is at the heart of the independent review of the Mental Health Act this time around.

BETH -I guess it's almost as simple as having that sounding board at work or something isn't it, where it just gives you that extra bit of confidence if you can talk to someone else about a problem or difficulty or decision you've got to make.

RAF -Yeah, precisely. I mean, advocates play such a key role in being able to relate information back to the service from the service user, particularly where communication is a difficulty. I mean, if you're suffering from a mental health problem and you've got communication difficulties that's one thing, but when you add in the kind of cultural element and perhaps language barriers it creates a whole other dimension of difficulties in relation to communication. And that I get, and I guess that's really where culturally appropriate advocates fill in that gap.

BETH -We know that Ashley would have preferred to be involved in the decisions around her care, so would a culturally appropriate advocate have helped?

ASHLEY -Yes, I think it would have been helpful, but also I felt like there was diversity in the wards that I was in with mental health nurses and other people. So I would definitely say it does help when you can talk to someone who may be going through similar experiences and can relate to you.

BETH -So as well as the culturally appropriate advocates there are also plans to simply improve the availability of advocates generally. So at the moment you have to know about them and ask for one, but one of the new recommendations is that it becomes automatic unless you specifically turn them down. Do you think that's also going to help someone's experience?

RAF -Yeah, I mean, that should have always really been the case. A lot of people might not necessarily know about advocates, so this idea of opt in never really kind of sat right with us and it's something we really pushed for and articulated for during the independent review of the Mental Health Act. So now it being an opt out kind of thing I think that will make a massive difference on the ground and will provide advocacy for many people who didn't have access to or didn't know about it before.

BETH -So you were only 18 weren't you when you came into contact with this system?

RAF -Yeah.

BETH - Did you have an advocate or did you know what one even did?

RAF -No, not at the beginning, and that is absolutely the point. Advocates do great jobs up and down the country every day articulating for some of the most vulnerable people in society and they're often under resourced and there's just not enough. So one of the concerns is are we going to be able to meet the obligation from this recommendation. So the idea, the concept, is great but is it something that can be practically done on the ground and are there the resources to be able to do so?

BETH -So we've just spoken about a few of the headline recommendations, along with ensuring autism or learning disabilities cannot be a reason to detain someone.

RAF -When you actually look at it, autism and learning disabilities are its own category really and it never really sat right that it fell within the realms of the Mental Health Act. And a lot of the time people with learning disabilities detained under the Mental Health Act really get dealt a poor card because of the attributed communication difficulties. So this is, like, really a big step towards creating more equitable and fair processes for people who are within services and with learning disabilities and autism.

So I think that that's definitely something that I hope will be a positive coming out of this review. And when you kind of take it with the other changes proposed, such as the culturally appropriate advocacy, I mean, the accumulation of these recommendations will most certainly make a change for people detained under the Mental Health Act up and down the country and hopefully we're just going to be able to deliver on it.

Sometimes these white papers and reviews aren't necessarily the final chapter as such, but are almost the beginning, and having these ideas is all great, but until we actually see the changes and the resources put towards them I'm still kind of holding my breath.

BETH -Even though it's a really big moment in the mental health world that these recommendations have finally come out after three years there's still a lot to sort out. So a lot of them will become guidance rather than legal requirements, as the whole funding questions are solved, but I know that they are hoping the Mental Health Bill will be published in 2022. And these were Ashley's final thoughts.

ASHLEY -There's definitely a lot of reform that needs to take place, but I think also as individuals who are going through things like psychosis or any other mental health problems, to know that you still have power even when you're sectioned, even though sometimes it feels like the odds are stacked against you, you can take out some positive things from being sectioned.

Because now when I look back I realise it was part of my recovery journey, and I guess it wouldn't have been the best situation if I was not sectioned and I was at home and still showing signs of aggression and not on any type of treatment. It's all about just knowing that you still have the independence and you have the power to make your own choices, even when you feel like those choices have been taken away from you.

BETH -Thanks to Raf and Ashley for chatting so openly about their experiences. If you want more mental health chat don't forget to listen to Mentally Interesting on the Ouch podcast feed where you can also find a whole load of other fascinating content. You can get in touch with the team too. Tweet @bbcouch. Find us on Facebook, we're under BBC Ouch, and send an email to [e-mail]. Bye.