Why did 2,000 Essex mental health patients die?

24th September 2024

bbc.co.uk/accessall

Access All – episode 126

Presented by Emma Tracey

FEMALE- [Cheering and music] Diane goes up into a handstand in front of Chris and he plays her straight leg like a guitar. Then they take tiny running steps on the spot , rotating in quarter turns as they swing their arms up and around.

EMMA- Oh, even listening to that back is such…it’s kind of emotional and exciting. Did you see Chris McCausland, blind comedian, on Strictly at the weekend? Because I’m blind and I know nothing about dancing so pretty much the same as Chris, and I’m absolutely fascinated as to how he managed to get through a routine on live television in front of an audience. My goodness. I mean, I know he found it tricky because here’s what he said after his dance:

[Clip]

CLAUDIA- Chris, and let’s be honest, they love you, you did the cha-cha, what do you think of that dance?

CHRIS- It’s absolute nonsense, isn’t it? [laughter] it’s like someone has taken, just sucked all the fun out of dancing and replaced it with terms and conditions [laughter]. You’ve got to keep your legs straight, your toes out, your shoulders back, your arms straight, you’ve got to point your finger out like that for some reason [laughter]. It took me two weeks to do it with my mouth shut, I was like, argh.

[End of clip]

EMMA- So, I’m going to talk to a blind ballroom dancer who has got experience. Hello, Martia Bevan.

MARTIA- Hello.

EMMA- Oh, lovely to have you on. Did you watch it on Saturday?

MARTIA- Yes. And just listening to that clip again it made me smile. He summed it up really well there because you do have to, you know, move your legs, and you’ve got to put your arm out and you’ve got to put your fingers in a certain way.

EMMA- I’ve watched a couple of series of Strictly now, but I still didn’t know about all those moves. As a ballroom dancer how do you learn those moves?

MARTIA- It’s a sort of three-layered effect. We are instructed about the steps first, no music. We then are counting the steps. So, for instance the cha-cha sort of back step, one, two, three. So, you’re sort of layering up the information in your mind before you even get to the third point of having the music.

EMMA- So, you just build it up and build it up and build it up one little bit at a time. You’ve had dance teachers and dance partners who can see; what advice would you have for Dianne for showing Chris the moves?

MARTIA- Well, it sounds to me like they’re already building up a really good trusting relationship, which I think is key. But the clear verbal instruction, the willingness to show using the body, you know, hands on hips etc.

EMMA- Yeah, so be very open to Chris touching the parts of her body that he needs to touch to learn what he needs to learn.

MARTIA- Yeah. Within reason obviously [laughter].

EMMA- Yeah. What would be a killer move or a killer thing to get right for Chris to really impress the judges?

MARTIA- The posture: your back, how it’s straight; how your hips are moving when they need to – and they need to not be moving when they don’t need to be.

EMMA- That’s interesting to me because I have not brilliant posture and I know a lot of blind people struggle with posture because we kind of put our heads down to hear what’s going on or heads to the side. We don’t look at other people and how straight their backs are and what way their shoulders are. And I know Chris could see before, but I actually am fascinated about the posture thing.

MARTIA- When you first do it to be in a hold, for instance, it’s not particularly familiar. And this is where practice really, really helps.

EMMA- Now, what would be your biggest worry for Chris McCausland in the Strictly competition? My biggest worry for him is that he’s going to run out of blind jokes because he’s gone in quite hard. There’s this place for blind jokes, I’m not against them, I use them myself, but I only have a certain repertoire and I’m worried that he’ll get to the end of his.

MARTIA- [Laughingly] he’s going to have a good repertoire of jokes. He will respond to the audience and he will just be himself. I think possibly it’s all the information he’s holding, trying to get it right and maintaining who he is.

EMMA- Tell me, you performed in Blackpool and that must have been absolutely epic, but what would the advice be around spatial awareness and stuff like that?

MARTIA- When it came down to it, just being on the floor, hearing the music, and we were familiar with the steps. And the last voice I heard actually when I went onto the floor was saying, whatever you do enjoy it.

MUSIC- Theme music.

EMMA- This is of course Access All, the podcast from the BBC that delves deep into stories about disability and mental health. We do the very serious ones and the very silly and fun ones as well, so don’t forget to subscribe to us on BBC Sounds. I’m Emma Tracey and this time: just as you thought you’d seen every disability sport there was and every classification in rolls the CYBATHLON. Disabled people and engineers pit their disability tech against each other, and one event sees disabled people see how fast they can move stuff around with their brains. We’ll be talking to some of the medal hopefuls there. Very exciting.

But first for something completely different. You may have heard about a major inquiry that’s underway into the deaths of 2,000 people in Essex who had mental health problems. They were either inpatients at specialist mental health units, or had recently been discharged or refused a bed. It’s known as the Lampard Inquiry, and the first few weeks have been devoted to impact statements from relatives of people whose deaths are being investigated. The inquiry is expected to run until 2026. The person leading the inquiry, Baroness Lampard, has said that by the time it has run its course she may have recommendations to make to how the entire mental health system across England is being run. In a moment we’ll hear from a mother whose son died shortly after discharge from a mental health unit, but first the BBC’s Nikki Fox has been following the inquiry. Now, she’s not our usual Nikki Fox that we have on this podcast. This Nikki Fox is the health correspondent for the East of England. And you’ve been following this inquiry a long time?

NIKKI- Mental health is something that I’ve regularly had to cover, especially the failures in Essex. There have been numerous reports over the years.

EMMA- And what is this particular inquiry designed to find out?

NIKKI- Well, as you say, there have been more than 2,000 unexpected deaths regarding mental health patients in Essex over a period of 24 years, so this is looking at deaths right back from the year 2000 up to the end of last year, so some of the deaths are quite recent. And the reasoning behind it is to try and understand what happened to patients, mostly in mental health units, but some after they went back home. And they’ll look at failures in detail, so everything from staffing to the technology used in the wards, whether there’s too much focus on medication and not enough focus on therapy. And then they’ll use that learning to make, as you say, these national recommendations for mental health care right across the country; because even though this is focused in Essex it is something that is a problem across the country.

EMMA- And who will the inquiry be hearing from to find all this out?

NIKKI- Well, they’ll be hearing from a total of 56 relatives, patients and staff to start with. They’re called the core witnesses. But lots more people could be called when the evidence sessions start next year. This inquiry does have the power to make witnesses give evidence, particularly staff. So, if they hear something during the inquiry that they want answers to then legally they can actually call the staff that were working at the time to come and give evidence. Now, at the moment relatives are telling the inquiry how the deaths of their loved ones has affected their lives. Next year though barristers will actually begin questioning witnesses and hear from the trust, the mental health trust that cares for these patients and other NHS organisations as well.

EMMA- And how do these types of inquiries conclude? Will there be prosecutions?

NIKKI- Well, there can be prosecutions. It depends whether the chair, Baroness Lampard, refers any of the matters to the police after this. So, this is a chance really to look at everything in depth and find out how wrong things have really been going. So, one of the things the inquiry has been looking at is sexual safety on mental health wards. Particularly with this the chair said that she would refer matters to the police if needed. She could also make a referral to police on anything else she hears that she has concerns about. Now, police did drop a corporate manslaughter investigation into Essex Partnership University Trust, which is the trust which runs mental health services in Essex, back in 2018. At the time it said that the threshold for proof wasn’t met. So, there would need to be new evidence coming out of this inquiry. But as I say, they are bringing in a lot more witnesses than they may have previously spoken to.

EMMA- Interesting. So, why is the inquiry focused on Essex? Is there something particular about how the mental health services are run in Essex?

NIKKI- Well, it really is just the sheer determination and the campaigning of relatives in Essex, just the families’ quest for truth. It isn’t run really any differently to mental health services elsewhere in the country, but there have been a series of failures. And it started with the deaths of two 20 year-old men; their names were Ben Morris who died in 2008, and Matthew Leahy, who died in 2012. Now, both were staying at this unit called the Linden Centre, and their deaths happened in circumstances that left lots and lots of unanswered questions. So, their mothers joined together to campaign for answers. And the health and safety executive prosecuted the mental health trust in Essex over 11 deaths, and they were fined £1.5 million. What happened then is families gathered more than 100,000 signatures to have these deaths debated in parliament, so it really brought this issue in Essex to the forefront of politicians’ minds. And then an inquiry was set up without full legal powers, but then hardly any staff came forwards to give evidence so it really was a bit useless. Then it was made a full public inquiry, and that’s now called the Lampard Inquiry which has just started.

EMMA- In a moment we will be speaking to one of the mothers who spoke at the inquiry this week. Nikki, you’ve been there for all of it, how has it been following the proceedings?

NIKKI- It really has been quite difficult. I mean, on the first day that relatives began giving their opening statements even the chair, Baroness Lampard, you could see she was wiping tears away from her face. As many as eight families a day have been telling the inquiry how they lost their loved ones and what kind of impact that’s made on their lives. And what’s really struck me is how those who died covered a complete cross-section of society: so there was a parish counsellor, a removal man, we’ve heard testimony from the parents of students, grandmothers, grandfathers, one was an author on economics, there were mothers with four children. And many of the families had pleaded for help and not received it. They thought a mental health unit was a place of safety. And one mother called mental health care, ‘hellish to its absolute stinking core’ you know, the passion that came from them.

EMMA- Difficult to listen to.

NIKKI- Yeah, it was really, really difficult to listen to because, you know, it really made them lose faith in the NHS that they weren’t getting the level of care that they thought that their loved one needed.

EMMA- Nikki Fox, thank you so much for speaking to me.

Earlier I spoke to Julia Hopper. Her son, Chris Nota tied in 2020 aged 19. He had recently been discharged from a mental health unit in Essex and was living in a rehabilitation centre in Southend when he took his own life. Julia, thank you for joining me.\

JULIA- Hello, thank you.

EMMA- You gave an impact statement to the inquiry on Monday. Let’s hear a bit of that:

[Clip]

JULIA- My son, Chris Nota, must be dead because I am sat here, and I still just can’t accept it. I have been devastated by the loss of my son and severely traumatised by the circumstances in which it took place. My suffering continues. I try to speak generally and not to speak about my family, my boys, because if I allow myself to feel anything I will hit the floor and never get up. I know that nobody has our back.

[End of clip]

EMMA- That must have been quite a moment?

JULIA- Yes, we’ve been waiting years to be able to speak publicly. We’ve been banging on doors for years. And the issues have been very severe. But you almost feel like you’re freezing; you physically freeze because it’s so important.

EMMA- Can you tell me a bit about Chris and what happened to him?

JULIA- Chris had classic autism, epilepsy and an IQ of 58, so he was dealing with a great deal of challenges, and he may well have had other things going on. That’s quite normal that there are other things going on that parents don’t know about in this country. So, he had a great burden. And his lust for life was greater than anybody else’s, his bravery, his commitment and his kindness, because he knew how it felt to have to push harder, ten times harder than anyone else just to live a very basic normal life. But that was good enough for him and he was full of fun. He would have had you screaming with laughter. You couldn’t have helped but loved him. Having him around just absolutely illuminated every space. But he had gotten into cannabis down at the park after school unfortunately, and that certainly didn’t help. It seems to be everywhere: trying to deal with the stresses of life using the wrong things, in the absence of any understanding. And then a triple bereavement and a COVID era, the very bizarre situation that we all found ourselves in, which meant we couldn’t leave our home, really terrified him. He wondered what was going to come next. And he couldn’t cope without being out and about walking, moving, living, so he became psychotic. And over an 11-week period he ricocheted in and out of hospital, relentless negligent discharges. And it was terrifying, multiple attempts both inside and outside.

EMMA- Multiple attempts to take his life?

JULIA- Yes.

EMMA- What parts of his care, Julia, would you say were inadequate, that you felt were inadequate?

JULIA- Absolutely everything. However, I think the highlights would be a wish not to understand or include his own autistic profile and the needs that might arise from that, and the kind of treatment he needed, and his risk.

EMMA- So, they underestimated his risk you think?

JULIA- Yes. I don’t think that’s at all unusual. I think that’s why we’re losing so many.

EMMA- Now, it was a very long fight to bring the inquiry about. Why do you think it took so long for the authorities to agree to it?

JULIA- Mental health involves vulnerable people, epileptics, autistics, disabled people, and their lives are not valued. And in many ways we have to be very, very careful that what we haven’t done is actually dispose of these unwanted people who are not regarded as being people of value and equal. They are unique in that we don’t have huge lobbies like the BAME or the LGBTQ communities do to try and get some semblance of equality and safety because many of us are vulnerable and don’t leave our own homes or require carers to support us.

EMMA- You found a whole network of relatives and you’re all part of a network and you’re all now involved with the inquiry. Now that the inquiry is happening what is the mood within this group of relatives?

JULIA- We are cautious and realistic. We know the inquiry has to truly deliver because our phones ring off the hook with the parents of young people who are at high risk and are being failed in real time. And we have absolutely nothing that we can give them that can help them save the lives of their children.

EMMA- What do you hope the inquiry will achieve?

JULIA- Well, the only achievement for me – I know some want answers, and that’s absolutely fine – but the only achievement for me that will have any meaning over and above that and in far higher priority to that is that we stop our children and young people being hurt for life, suffering and, in a great many cases, dying, and we stop that. And so we will have to open every single Pandora’s box fearlessly to do it, and we must.

EMMA- Oh Julia, thank you for joining me. And rest assured we will be keeping an eye on the Lampard Inquiry on Access All.

MUSIC-

EMMA- It is the stuff of sci-fi, being able to move objects around without touching them using just the power of thought. That’s what a team from the University of Bath will be tapping into when they compete at this year’s CYBATHLON in Zurich. It’s a competition which brings teams together from all over the world to fight it out in the field of assistive tech. The University of Bath team will be racing in the brain computer interface category, and that’s led by professor of neurotechnology Damien Coyle. Hi Damien.

DAMIEN- Hi Emma.

EMMA- And the pilot, the man doing the racing, is Owen Collumb. Hi Owen.

OWEN- Hi Emma.

EMMA- Better go back to the beginning and find out what all this is about. Damien, tell me a bit more about what the CYBATHLON actually is?

DAMIEN- CYBATHLON is an international competition where there’s six different races, one of them might be a functional electrical stimulation bike race where you stimulate the muscles using technologies; another one is an exoskeleton race where you wear robotics on the external to your body to control legs and limbs and so on. And we’re competing in the brain computer interface race where people like Owen with a spinal injury compete against each other in a virtual race that involves controlling or manipulating objects just by simply modulating brain activity. And the way we do that modulation of brain activity is normally ask the person to imagine movements, we pick up signals in the sensory motor area, the motor cortex. So, whenever you imagine a right arm movement, for example, you’ll get changes on the opposite side. You can detect those differences and then enable Owen to potentially move something or control something just by translating that signal into a control signal.

EMMA- Tell me in simple terms in a bit more detail how the tech works, what the brain computer interface actually is?

DAMIEN- We would put a headset on and that headset will pick up electrical potentials in the brain, normally referred to as brainwaves or electroencephalogram, EEG. And so when we put an electrode on the scalp non-invasively we’re picking up measurement of the activity in the brain.

EMMA- Owen, what’s the thing you wear? What does it look like?

OWEN- It’s a general cap, tight-fitting cap. It straps around your head and we have sensors inside there for monitoring different areas of the brain. And then through a Bluetooth signal those brainwaves make their way back onto a computer for Attila and Damien to monitor.

EMMA- What’s the one that you came up with maybe or that the competition came up with that you thought oh yeah, that’s a good one, that shows off our tech really well?

DAMIEN- We’ve competed now for a number of years in the competition, so we started in 2015, and all those races it was like a virtual track where you had to get to the end of the track the fastest. Basically Owen would have told our virtual vehicle to turn left, turn right or turn on the lights at a specific time, and then have a no-control straight which is nearly as difficult as actually controlling, where we want to continually monitor the brain but we have to detect when Owen doesn’t want to do a command as well, which is quite challenging. This is what causes a lot of challenges for the competitors in this competition and for the field of brain computer interface in general: the brain is very non-stationary, it’s continually changing if you’re a little bit fatigued or just had a coffee or a little bit stressed. 

EMMA- Tell me about it, Damien, tell me about it.

DAMIEN- Everything changes [laughingly] yeah. This year the competition has changed quite a bit where there’s four different challenges: one of them is to drive a wheelchair through a virtual environment; another is to select from a menu system of eight options; another one is to move a cup into an ice dispenser; another one is to move a key into a keyhole. So, these are things that we might associate with activities of daily living.

EMMA- It sounds like they’ve made them more sort of small fine motor-y, do you know, rather than just bit sweeping things, Owen. Has that been a challenge to get more kind of intricate with it?

OWEN- Yeah. I think the principle behind it is that these devices in the future will be for the home environment and probably available for everyone like ourselves, and everyone to pop a cap on and imagine something and fill up your cup, turn on the kettle, turn on the washing machine by thought, instead of using Alexa or other devices that are kind of mainstream at the moment. You would potentially just think of something and it would happen instead.

EMMA- Probably better than shouting at a speaker all day.

OWEN- It would be.

EMMA- What kind of preparation do you need to do to get really good at this?

OWEN- I need to just imagine movement, so just imagine lifting my legs. Obviously I have paralysis now and so I can’t do it in reality. Whatever I’m doing if I want to move the wheelchair right or left I just imagine those thoughts and it goes in that direction more or less. Sometimes I have a few crashes, but [laughs].

EMMA- Yeah, psychologically weird to be saying imagining doing things that you can’t physically do in reality. And it must be exhausting in general moving stuff around with your brain?

OWEN- It can be. It is a little bit tiring, especially when it doesn’t work. And as Damien said, there are neurons shooting off everywhere in everyone’s brains. Specifically when they get the tech right it works really well; you can actually drive the wheelchair through the rooms some days with no error at all.

EMMA- Damien, Owen talked a little bit about how these technologies could be used in daily life for him. What’s your aim, what can you see them being used for?

DAMIEN- Well, we started off with people who have spinal injury, but soon realised that movement independent communication technologies is not really going to benefit someone with a spinal injury that much because they can speak and they can do lots of control. But we’ve worked with people that have had severe brain injuries that have come through a coma and they could be in this state now and it’s prolonged disorders of consciousness. And so first of all we’d be using these technologies to determine if that person can hear us or has consciousness by asking them to imagine movements, and then seeing if there are differences in the brain response and association with those instructions.

EMMA- That’s fascinating.

DAMIEN- With the aim of maybe teaching them over time with auditory feedback in this case, because these people normally close their eyes during the experiment and so on, so we play sounds and they have to move the sounds. And the idea there is first of all can it be used as an assessment tool, but can we establish a basic yes-no communication system with people like that. We’ve also worked in stroke rehabilitation where people engage their sensory motor areas again and do repetitive imagined movement, which activates areas that might help them regain lost function as a result of stroke.

EMMA- Right, so very, very useful, very useful.

DAMIEN- Oh for sure. After a stroke if you’ve lost upper limb control or hand control then a physio will help you do repetitive movements. But if you’re not engaged in that repetitive movement task, like you could be daydreaming, it’s not going to be nearly as effective. Whereas with a brain computer interface if you’ve got an imagined movement detection then the person has to engage the brain first, and then you can hook that to an exoskeleton or a functional electrical stimulation device that stimulates the hand and you get that full sensory motor loop there going. That’s been shown to be really positive for stroke survivors.

EMMA- Sort of brain physio, that’s so interesting. Tell me, are you going to get a prize if you win or is it just kudos and that you can stick it to the other tech guys?

DAMIEN- Yeah, I think there’s a bit of that that we can show right, we’ve done really good innovations and won this international competition, and you can get a gold medal, silver medal or a bronze medal. But it’s much more than that for us in terms of driving innovation. We’ve had to do some really advanced developments just to make sure that we can compete. In terms of the competition it’s raising awareness around the need for assistive technologies, rehabilitation and physical disabilities and so on. So, there’s lots of wins for us in terms of competing in this competition, even if we didn’t actually win the event.

EMMA- We were talking about wearing the cap, then we’ve got Elon Musk and the brain implants which end up with a similar job, you can move things around by thinking about them. Which do you think we’ll see in the future? Do you think it will be more brain implants or more caps?

DAMIEN- So, in terms of Neuralink and invasive implantable technologies these are seeing major advances in recent years. The evidence so far is limited in terms of what Neuralink has done, but the few patients that have these implanted and the reports show that it’s controlling things quite well after a few weeks of training, which is really positive. The implantable nature of it makes it a bit more risky, and it’s limited to people that really want to go through a surgery. But again, seemingly the Neuralink technology is implantable in one day and the patient can leave the next day so it seems to be its innovation in that area has been dramatic as well in terms of being able to sew nano threads into the cortex. So, that’s why we focus on non-invasive; I think it will be a while before everybody is able to get an implant, able to afford it. It’s going to take some time before that technology comes online. However, with implantable technology you do have a little less noise that makes non-invasive technology a little less robust as well sometimes. But interestingly at the CYBATHLON competition this year there is one team that has an implanted technology and we’ll be competing against them so we’ll be going head to head to see how well that goes.

EMMA- Ooh. Head to head, I get it, very good, very good.

DAMIEN- [Laughs]

EMMA- So, they’re doing the same race as you but with an implant?

OWEN- Yeah.

DAMIEN- Yeah, that’s the University of Pittsburgh team.

EMMA- Pittsburgh?

OWEN- America.

EMMA- Right, well let’s see what happens. Good luck to Damien and to Owen. Thank you so much for joining me.

OWEN- Thank you. 

EMMA- And attempting to get the information into my little head. You can watch a live stream of Owen strutting his stuff at the CYBATHLON in Zurich from 25th October.

Thanks so much to everyone who got in touch with us recently. Your messages mean a lot. They make the entire team happy, so you are in fact providing a very important service, please keep it up. Like Emily who said she enjoyed our Paralympics episodes. Yay! Emily says, ‘I can’t watch TV, especially the exciting stuff, so this has been a really nice way to still be able to connect with the Paralympics’. And that’s exactly, exactly what we wanted, Emily: we wanted to bring the drama and the joy, without getting into the sport too much. Of course the sport is important too, absolutely is, definitely, definitely is. Emily has also asked if we can put a link to the transcript in the description of each episode. Can we do that team? Can we do that? We are going to see what we can do there. But if you want to search for old transcripts go onto your search engine, pop in BBC Sounds, Access All, some words relating to the episode you want and the word transcript, and it should come up fairly near the top. Complicated? Yes, slightly, but I know you can do it. Honestly, we know loads of you read the transcripts so thank you very much for mentioning that, Emily.

Do like Emily please and get your messages into us. There are loads and loads of doing it: you can email [email protected], you can go onto X, formerly known as Twitter, or Instagram and look for us @BBCAccess All. Or you can send us a WhatsApp, you could send us a voice message or a text message to 0330 123 9480. Just put the word Access before your message so it makes it easier for us to find.

Now, you might have heard me pop up on In Touch on Radio 4, it’s the programme about being blind or visually impaired. I was talking about one of my favourite subjects, wild swimming, or cold water dipping, which is kind of more what I do. Also pretty fair weather as well, it’s mostly summertime when I do it. Anyway, here’s a clip of that:

[Clip from In Touch]

EMMA- Ooh! Now, you will hear a lot of noises from me.

MALE- So, it’s about 10m wide, you can hear the water lapping either side of it.

CHILD- Very cold.

EMMA- Thank you.

MALE- And we’re looking right across to Edinburgh. There are some little boats in the near distance.

EMMA- [Blows] ah, it’s really cold. I’ll probably get down quite quickly. Ah!

MALE- You can do it.

EMMA- Ah! [Claps hands together] okay, I’m going to do it. literally just for Radio 4. Ah!

MALE- There you go, that’s Emma in the water, swimming.

EMMA- Ah [laughs] it’s so c-c-cold. I literally can’t catch my breath.

[End of clip]

EMMA- If you want to hear more of me shrieking, apparently there’s quite a lot of it in there, you can find In Touch on BBC Sounds. And as it happens you can subscribe to us on BBC Sounds. Please do that. Catch you next week. Bye.