‘Home is quite a frightening place. Often, home is hospital.'
You’re working exclusively with patients with emotionally unstable personality disorder (EUPD). What are these people like?
I would say they are all attachment seeking. Keen to have relationships. Often they are terrified of leaving hospital, because they've been in hospital for so long. But they might also say that they really want to leave – there's an ambivalence about the way they feel. Often they feel quite frustrated. For various reasons, they feel let down by the NHS. They feel forgotten. They feel they're sent to units and get forgotten about by their local teams.
So they’re being sent from NHS units out to private units?
Yes. Everyone I work with, there hasn't been an NHS facility in their local area which is able to cater for their needs. These are all people who are from South London, and they are referred to private units that might be all around the country. Wales, Suffolk.
From what I understand, you’re tasked with ‘bringing them home’.
This is a small number of patients, but a high cost. My job is trying to bring them home, back to the community in the least restrictive option, and to develop improved NHS services so that we're not sending so many people to these units.
It’s legislation that the least restrictive option should always be taken with patients. Trying to keep people in the community, not forcing people to do things they don't want to do. Often these patients, they're in units on constant observations by staff, and they're locked up, they may not have any leave, or only a little bit of leave. They’re in very restricted environments.
Some of them have been in these units for over four years. Often, what happens is they go to one unit, and the unit says, ‘we've done everything we can, they need to be moved’, and they do a sideways move to another unit. But it's very difficult to actually discharge them. Some of the patients haven't been there that long, so it's not necessarily about saying, ‘Come on, we need to discharge them’, it's about just making sure they're having the treatment that they need in order to live back in the community. But previously, there weren’t really people checking what was happening to these patients. They were getting sent there, it was being paid for but they were just left to do their thing, really.
You’ve described these patients as ‘profoundly detained’.
Yes, and I guess that's because they've been in services for so long. They're kept in boxes or in houses, but they don't fit in our boxes. They don't fit into our NHS services. There's a sense that the patients are stuck, and there's no way out. The patients get this sense and can feel very dispirited, and sometimes go on to self-harm, because they feel stuck.
We do have services for people with emotionally unstable personality disorder. There was the White Paper in 2003 that said personality disorder is no longer a diagnosis of exclusion. But when someone is viewed as very chaotic, or using substances a lot, for example, or can't engage in a group, then we may say they're not suitable for psychology at this time, or they don't meet our service criteria in the community, so they require treatment in the hospital. There aren’t any NHS hospitals in South London who provide treatment for personality disorder. And also the NICE guidelines say people with EUPD should only be in hospital for brief crisis periods.
So in terms of ‘getting them home’, what does ‘home’ mean for them?
That's part of the difficulty, because home is perhaps where they've been abused, or neglected, or not wanted, or have been around friends who led them the wrong way. Home is quite a frightening place. Often, home is hospital. So often, the patients have decorated their rooms beautifully. They've really moved in. When we go and speak to the patients about moving to another unit, a lot of the questions are ‘well, can I take all my stuff? Will I be able to decorate my room in the same way?’ They make themselves at home in the units.
Do you see parallels with other populations? I hear similar issues around developmental disorder, and even just in terms of challenging behaviour at schools. I've been a school governor, and the policies around exclusion have always surprised me… kids who get pushed from pillar to post, always someone else’s problem, never finding a home.
Definitely. Often these people been excluded from school, had to go to a special school for people behavioural problems, or had to go to children's homes because no foster carers can manage the behaviour. It just continues developmentally. The same thing happens through adulthood.
How do you manage their behaviour?
It's always a communication of something. The first thing would be to try and understand what's happening for the person, what are they communicating? Why are they in so much distress? Listen to them. Rather than trying to fit patients into our boxes, how can we work creatively with the service users so that our services fit around them. We shouldn't just be closing the door on our patients; there should be always a door open. That's part of the difficulty – that there isn't a door. They're sent somewhere else. And I should say that we're very grateful for the private units – without them, there would be nothing.
You don't make managing their behaviour sound that challenging, or that expensive. Why does it not happen more?
Sometimes it can be exhausting for staff. Staff might get burnt out, or become very over-involved. They want to rescue people, and then get exhausted and withdraw, which feeds into that sense the person might have of having had multiple rejections.
To give the amount of time that our service users need is a challenge. It can be easier to say, ‘this person is too risky to be in the community, they need treatment in hospital’. Then that person's gone. They're not coming into our acute wards, smashing places up or engaging in risky behaviours. They're gone. It fixes the problem for the individual services.
How has the work affected you?
It's been a challenge. I've gone from working very much in a team of psychologists, and a ward team, to working in a team where we commission services. I'm one person, and it seems like quite a big job when these patients are so stuck to bring them home. Sometimes when I've had conversations with colleagues, they have taken a while to warm up. There's a sense of ‘what's going to happen, when these patients come back?’ So it has been difficult. I've not always felt like I fit in. Staff haven't always wanted to meet with me to think about the difficulty. It has felt quite lonely at times.
Which is how the patients themselves feel, I guess?
Exactly that. There's been a kind of mirroring: the staff team, our system, mirroring what happens to the patient group. The patients feel like they don't have a place, they may feel unwanted, and lonely. Perhaps the patients feel overwhelmed as well… I have felt quite overwhelmed. I have got a good team around me, I've got a team, but it still has felt very isolating. And the patients are isolated.
It’s presumably quite useful to identify with the patients. At what point do you worry about over-identifying?
That's a really important question. I need to make sure I don't effectively become a patient. That may then cloud my judgement, it might be difficult for me to form relationships if I'm feeling like I'm isolated and that people don't want me. That might affect the way I work. So I've used my clinical supervision to think about a lot of these dynamics. Probably anyone coming into this role would have felt this way… I can’t take it personally. The staff members are thinking about their specific services, there's nothing personal against me.
Everyone's got their own stuff they’re dealing with. But you still feel you’re working at the margins?
Yes. Across different services, three different trusts, three different sets of priorities, and lots of different people to form relationships with. When we're thinking about developing a new way of working, lots of people need to sign up to it. We can't just drop a service into a Trust. People need to see the benefit of it.
I've been piloting some pieces of psychological work in reaching onto the wards, working with the teams developing care plans, crisis management plans, and then continuing to be with the patient on discharge. And then when the patient's readmitted, maybe to a different ward, I'm still there, available. The staff see that it makes a difference – that patient is discharged quicker, and they have been able to stay out in the community, they haven't needed to go to one of these units. That's what's really led to there being a change in opinion, and buy in from people. Earning my stripe, I guess.
Sounds like you're more than doing that, to me. It's a lot for one person to fix. Is that part of new ways of working, to make sure there isn't so much on you?
Yes, it needs to be a team's approach. When I'm working with people with difficulties with relationships, we need to work as a team. If that team thinks that individuals should not be in the community, then it's very difficult to work safely. So a lot of the work is about building people's confidence in how to manage risk and support people. The other challenge is, if the patient themselves wants to stay in hospital, what do you do? If the patient says, ‘I'd like to have treatment in hospital, I don't think I'm safe enough to have treatment in the community’. If we then try and discharge that person, they may be very upset and quite angry, and feel quite invalidated.
Is a lot of it down to spaces? Physical and mental spaces, so that the person is that there will be equivalent places of safety, literal and metaphorical?
That's interesting… often there hasn't been space in other people's minds for these patients. Their early caregivers, for example, perhaps there might not have been space for whatever reason. Within the NHS, there's not really space. What people often say is, ‘now I need the physical containment of the hospital to keep me safe, so that I can engage in therapy. If I'm in the community, then I may act impulsively, and hurt myself’. And they may say, ‘I want to make this work, and that's by receiving this treatment in a hospital’. And often they may have looked online for services and found somewhere that they'd like to go.
Another home. A lot of it seems to come back to needing a home, and they're grabbing on to the closest thing they've got at any one time.
And their sense of hope, I think. If you've been rejected by services, if you've been told no, you can't access this support in the community, or if you’re told we've got an 18-month waiting list for treatment. People think ‘how on earth am I going to survive?’ There is this option of receiving treatment in a private hospital, and I suppose sometimes people might think, ‘well, if it's private, then it's better quality’. When we think about physical health, the idea of going to a nice private hospital… nice meals, and the best doctors for my broken leg.
Do you feel at this stage, optimistic about psychology and what it can do for these people?
It's the entire system around that person. I always hold hope for the people I work with. I've been drawn to working with people who other people have lost hope for. People say, ‘they won't engage’, or ‘they're untreatable’. But if you give them the time and space to think together and build a relationship, then you can make progress. The idea of someone being untreatable… I don't see that.
You've mentioned the system a few times. Is it the system that is potentially the dangerous mind?
Again, I might sound a bit like a patient when I talk about this… ‘the system has let me down’, this is often what the patients say. For this particular group, perhaps there isn't necessarily a planned out way of working in the way that there would be for less complex people. The system perhaps isn't thinking. The system's way of managing risk is through restraint, or using medication, which are forced on people. We become violent in our way of managing violence. And all of that could be a re-enactment of what has happened in someone's earlier life. Force feeding someone, sticking tubes into someone, or needles, the kind of images… if someone's experienced sexual abuse, it's re-enacting those traumas. Sometimes that may be the only intervention someone's receiving. They may not be receiving psychology. Some of the units, they don't have psychologists in post, they may not have an occupational therapist. What they're receiving is medication, physical containment, and being watched by nurses.
Have you been influenced by the Power Threat Meaning Framework?
Definitely. We’ve been talking about people who have had power imposed over them their entire lives, from a young age. This is continuing, often through people in positions of authority making choices about our patients. Being done to rather than done with. So we've been trying to think about things like trauma-informed care, and increase collaboration, choice, and consistency. If a patient wants to go back to her old accommodation, but the community team are saying she needs higher support accommodation… they're saying, ‘you know, they can't give you medication’, and she's saying, ‘yes, they can’… I try to stop the team and ask, how can we think about her choice? Can we go back to her old accommodation, see what they can offer, see if it would be safe? Then at least we've tried rather than just saying ‘no, that door’s shut’.
Where do you see yourself in three years’ time?
This job is quite focused on strategy and service development, and I do miss working clinically, being embedded in a psychology team. So I'm not sure I could say that in three years, I'll still be doing this role. It's quite early in my career to be effectively working as a commissioner.
But I think I’ll always work for the NHS. I was raised by parents who work for the NHS, it's important to me. And definitely working with people personality disorder. I really value the relationships I form with my service users. I value seeing the people I work with change, and develop a life that is meaningful for them.
- Read Dr Turton's response to a recent Royal College of Psychiatrists briefing paper on eliminating out of area placements in mental health.
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