'Why are we stuck in hospital?' Barriers to people with learning disabilities/autistic people leaving 'long-stay' hospital: a mixed methods study

Hospital staff

For staff perspectives, we carried out a focus group of hospital staff in each site. These explored how staff experience their work; how delays impact upon them; what support they would like; key causes of delays; and practical steps forward from a staff perspective. When engaging with staff, we sought to include front-line members of the immediate ward/care team (e.g. support workers and nurses on the unit), as well as members of the wider clinical team (psychologists, psychiatrists, physios, OTs, social workers etc.). Focus groups were particularly helpful here, as they enabled people from different professional backgrounds to interact and, wherever possible, reach a degree of consensus around key issues. To guard against the dangers of front-line staff feeling unable to speak freely, we also offered the opportunity to have an individual interview if this would help them to feel more comfortable contributing their views and experiences. While we were intending to carry out focus groups face-to-face, COVID restrictions meant that these took place online.

In addition to these focus groups/interviews, we also reviewed each person’s case file and observed a series of multidisciplinary decision-making meetings relating to as many of our participants as possible. These were designed to help us better understand people’s journey through services and the local context – so were more for background/preparatory purposes, than to collect or report new data.

Interviews with commissioners

Once the person with a learning disability had consented to take part, the hospital care team contacted commissioners with an introductory email, information sheet and consent form. Interviews took place by telephone or online (Teams/Zoom).

Interviews/focus groups with additional social care participants

Having received agreement from NIHR that we could extend the study to include additional social care perspectives, we carried out online interviews with social workers allocated to each of our participants. In one site, the provider had in-house social care staff who helped co-ordinate discharge from the hospital perspective, so we interviewed them as well as social workers based in local authorities. We also carried out online interviews/focus groups with advocacy organisations and social care providers supporting people to leave hospital (recruiting both those active in our case-study sites, and from organisations which are part of our Advisory Board/their memberships). Because of the diverse nature of our Advisory Board, this meant that we included a range of organisations providing statutory advocacy (e.g. Independent Mental Health Advocates) to a whole ward, site or geographical area; potentially smaller organisations that work with particular individuals in a very person-centred and bespoke way; and a mix of local, regional and national providers across the voluntary, community and private sectors. Our interviews with social workers were also supplemented by national focus groups with social workers connected to the British Association of Social Workers (BASW) work around ‘homes not hospitals’.

Broader length of stay

Lengths of stay are sometimes reported either as context or as a proxy for delays, and in different ways. Some studies report the proportion of people staying for different lengths of time, while others report mean or median lengths of stay, and some a combination (see Table 4). Oxley et al. 58 also reported a longitudinal change in length of stay, with median stays increasing from 6 to 9 months across 4 years. Length of stay ranged significantly between settings – for example, ATUs or similar settings had shorter lengths of stay than secure settings, ranging from weeks55 to median stays of 3–6 months. 58,59 What is notable, however, is the large proportions of people staying for many years: secure settings reported a large number of people staying more than 5 years, including 42% of people staying over 5 years and 11% over 10 years in a medium-secure setting,60 mean lengths of stay in a locked rehabilitation unit of over 6 years (for those now discharged, Taylor et al. 56) and mean lengths of stay of over 10 years in a high-security setting. 52 In studies reporting across a range of settings, more than half of people were often staying more than 5 years. 35,65,66 In Scotland, the Mental Welfare Commission for Scotland34 found around 70% of people staying longer than 3 years. Where lengths of stay are reported as an average, of course, the inclusion of a number of short-stay settings means that some people experience very lengthy inpatient stays, sometimes reaching into decades.

Personal characteristics (individual factors)

Many studies reported reasons for delay/excessive lengths of stay which may relate to particular characteristics of the people who are delayed (see Table 5), seeking to find statistical associations between length of stay/rates of delay and patient characteristics such as age, gender, behaviour, level of disability, co-existing diagnoses and criminal record. For example, Washington et al. 59 found that 61% of inpatients with ‘barriers to discharge’ had a secondary diagnosis of autism, while 41% had other mental health diagnoses (e.g. bipolar disorder, depression and anxiety). In general, ‘challenging behaviour’, psychiatric diagnoses and a higher degree of intellectual disability are seen as some of the main predictors of a longer length of stay/difficulty discharging or transferring. 52,53,59,60,62,64,67 This is largely linked to risk, with those perceived as higher risk to themselves or others seen as being more likely to be delayed. ‘Social’ factors such as a poor home environment or a lack of home support were also mentioned,62 along with the patient having a high level of physical care needs or ‘complex needs’ such as mobility issues, needing 24-hour care, waking night staff or 1 : 1 (and more) care. 34,52,67 Interestingly Beer et al. 53 and Watts et al. 67 both found that being admitted informally (i.e. not formally admitted under the MHA) was associated with being delayed or needing a higher level of security, suggesting that being detained under the MHA can be a positive factor in a timely discharge or transfer, possibly because it is linked to a statutory process of regular reviews which includes continuous reassessment of the appropriateness of the setting.

While it seems likely that people with particularly significant needs might need a very bespoke response (which might take longer to arrange than more routine care), a number of authors recognise that each individual has a unique set of characteristics and needs: the groups being studied are very heterogeneous and everyone has a particular story or profile. 54,58,60,67 As a result, basic demographics were rarely found to be useful predictors of longer lengths of stay or being delayed. As Oxley et al. (p. 38)58 observe:

It is important to keep in mind that individuals with intellectual disabilities accessing specialist inpatient services are more likely to present with complex clusters of symptoms and behavioural problems that may span several diagnostic categories.

Moreover, highlighting individual characteristics feels problematic for a number of reasons. First, many studies report associations and possible links between characteristics, implying but not stating a causal relationship between the characteristics and the length of stay or delay. In some cases these statistical analyses have been conducted on small samples, arguably making techniques such as regression analysis less useful for exploring reasons for delays than other approaches (see below for further discussion). Second, it can lead to an over-simplification: for all the statistical calculations linking potential delayed to particular factors associated with the individual, there is a risk that much of this literature ultimately concludes that working with people with multiple, complex needs is essentially ‘complex’ – which does not feel a very earth-shattering observation. Finally, in the literature on older people delayed in general hospitals, there has been a concerted attempt to avoid labelling people as ‘bed blockers’, as this implies the delay is somehow their ‘fault’. In practice, the vast majority of older people would rather be at home, and the delay is usually due to system issues rather than any fault of the individual. In other areas of social policy, indeed, focusing on personal characteristics would be seen simply as ‘victim-blaming’, and might be considered offensive.

Process (organisational) and system (structural) issues

Many of the papers included also give reasons for delays that are related to the process of discharge, such as administrative issues, funding and the availability of suitable placements. In most studies, these factors are identified from case notes and so vary significantly, often dependent on the local context and on some of categories used by specific sites, members of staff or service providers at the time the notes were made. Some of the reasons given are also fairly speculative and tend to lack further explanation (e.g. a statement that there would be fewer delays if there were more suitable placements available in the community, without any real attempt to define what ‘suitable’ means, consider what kinds of placements are available or reflect on whether more or different placements really would make a key difference – and certainly no attempt to test any of this).

Admitted from prison for treatment

Some people came to hospital directly from prison under a forensic section of the MHA:

I come to hospital two times in my past prison sentence, I was in prison, then hospital, then back to prison, then hospital and then I stayed in hospital.

(A2 PLD)

At times, the person and their family had slightly different accounts of why they were transferred, although the conclusion was still the same – that hospital was seen as a better setting for that person than prison:

I got arrested and I was in prison for two years and they said it will be better if I do my course and I’ll be better in the hospital ward than I would in a prison, I learn better in a hospital than I would in a prison.

(A3 PLD)

He was admitted to hospital because he was referred – when he was in prison obviously he had quite a few issues mental health wise, so I think the mental health team came into it while he was in prison and I think that’s how he’s got referred because of obviously his mental health and I don’t think he was coping in prison.

(A3 Family)

Transferred from other hospitals or services

Some people came to one of our sites for very specific and structured programmes around sex offending or arson. In other cases, people were transferred because a previous setting was felt to be unable to meet their needs. In the case of the person below, a transfer was necessary because of a series of incidents in a previous setting, leading to admission to a medium-secure ward. However, commissioners had found it very difficult to identify anywhere that was appropriate in terms of security and in terms of gender – and eventually the current hospital was the only provider willing to admit her:

She one night absolutely destroyed the hospital – she broke out of seclusion – long term segregation – she put through something like 36 windows – she took doors off – all the doors to the patients’ apartments all had to be locked – staff barricaded themselves in the office and called the Police – that happened on two occasions. I ended up holding a provider event – I invited national providers – NHS and the independent sector – to a venue … because I still hadn’t secured a provider … and what happened was, bless her, the … clinical director from [Site A] came and she went ‘I’ll have a go’, put her hand up in this – and to be fair it was very poor uptake – I think there was only about five providers that turned up and I presented the case.

(A7 Commissioner)

Breakdown of family support or community placement

For the participants not on a forensic pathway, reasons for admission tended to relate to a deterioration or crisis in the person’s mental health, a particular incident or an increase in ‘challenging behaviour’ – which meant that a previous setting was no longer able to provide the necessary support. For example, one person had assaulted multiple staff at a previous community placement, as well as a police officer. Here, a staff member describes how that a crisis may have been triggered by a bereavement:

So he was admitted I think three or four years ago and then got discharged because he improved with his behaviour, he was taking medication, he was following a routine. Then he’s been readmitted following discharge. He’s displayed more … challenging behaviours which [are] deemed to be from his mother passing which he was quite close to, so we feel like his behaviours have escalated further from his mother’s passing away which has made him deteriorate a lot more. That’s how he’s ended up with us again.

(B7 Staff member who knew the person well commenting in the absence of family)

Multiple services over the years

Many participants had been previously assessed and diagnosed with a learning disability and/or as being autistic at a young age, and the most recent hospital stay was one in a long line of admissions. Other people were assessed and diagnosed while in prison, and this resulted in their being transferred to a long-stay hospital setting. Over time, most people had received a range of different services from different parts of the system, including community health and social care, specialist learning disability services, other hospitals, other wards on the same hospital site, mental health services, services for people with special educational needs and the criminal justice system. Examples of these complex journeys are set out in Box 4.

History of offending, alongside long-term health and social issues

It was common for people on a forensic pathway who had been in multiple services over a long period to have long history of committing criminal offences and of being in and around the criminal justice system for many years:

So with [A7], she’s had a really complex, difficult time in managing to stay in the community due to her offending behaviour. So she’s got prolific history of both sexually offending, arson, behaviours that change into personal violence to others. She’s been in all levels of – she’s not been in high security but she’s been in low, medium, she’s been in locked rehab services. She was in the community and was offending, she had a Mental Health Act assessment and she was admitted to a locked rehab service, she was preparing for discharge – this is some years ago – she was preparing for discharge and sabotaged the discharge planning really because she went into the village and set fire to the local bin outside the post office, which didn’t go down very well, and she was smashing windows in the village and it was quite a conservative village, as you can imagine.

(A7 Commissioner)

In some cases, family members and professionals felt that the types of offences and the person’s ability to change those behaviours (or not) – that is, the reason they had kept offending – were directly linked to their learning disability and unlikely to change:

Personally, that behaviour’s not going to change. That is part of her, you know, she decides ‘That’s my person. That’s my carer’ and unfortunately in the past, in previous places … I’ve reiterated to the staff that, well they should already know, that you don’t give out phone numbers, don’t do this, don’t do that. ‘Oh yeah, but she’s so lovely’ and they do, and then we have a problem, then she’s found their houses. And she always does it.

(A6 Family)

B4’s primary offending risk was his paedophile behaviour … and as B4 had received psychological input and services over the years, it was evident that that risk had not reduced, and the reason why that risk had not reduced was because of B4’s intellectual functioning, not because of any disturbed, mental disorder, psychosis or psychiatric cause or mental ill health, it was primarily his learning disability.

(B4 Social Worker)

(Despite these views, it should be noted that both person A6 and B4 were discharged to the community during the course of the project, albeit with high levels of support, perhaps suggesting that it is sometimes important to find ways of managing particular behaviours and risks, rather than necessarily being able to stop them altogether.)

Many people’s stories illustrate ongoing patterns of struggling with transitions and moving between services, deteriorating in certain environments, the distress and upheaval of moving within sites, and ongoing difficulties finding services to meet more specialist needs. A1’s story in Box 5 illustrates some of this complexity.

Interaction with other aspects of people’s lives and identities

Two participants on forensic pathways were diagnosed with ‘gender dysphoria’ alongside additional mental health diagnoses and were undergoing gender transition. Participant A7’s story, for example, demonstrates how this affected her journey, and how challenging it had been to find a hospital placement that met her needs as a transgender person, on a forensic pathway, with a diagnosis of a personality disorder – long before she could be considered for discharge:

I think it’s also important to note that … when there was the high levels of violence and aggression … was [when] her hormone medication was reviewed. And what is apparent is that at that time she had an increase in testosterone. So the hormone programme that she’s on … – there was obviously spikes in the testosterone levels – so there’s a view that that may have contributed to the antisocial behaviour that was being witnessed …. The access assessment was undertaken and medium security was required – because of the transgender – could I find a provider? I couldn’t …. So I could have got her into a medium PD [personality disorder] service no problem. The medium female PD services were saying ‘we are not equipped to take a transgender female’.

(A7 Commissioner)

A small but significant number of our participants also had long-term physical health conditions such as multiple sclerosis, diabetes and/or mobility issues which needed to be managed alongside their hospital treatment, and sometimes had implications for the kinds of services that might be suitable after hospital.

Being around other people who are unwell

Many people described at length their experiences of being around other people who were unwell, and the effects of disruptive or violent behaviour towards them:

To be honest with you, I just keep to myself, in my room, just keep away from everyone, because they’re always bickering and people kicking off. I don’t want nothing to do with this, feel like the best thing I could do is just keep to myself.

(C1 PLD)

[Some of the other people here are] thieves, scumbags and people who obviously ought to be in high secure …. If you can prove you’re not a risk in this environment, you’ve done well.

(A5 PLD)

It’s OK [here] but I think it’s getting worse because like the other week three people kicked off. I put a complaint form in to have more staff on the ward.

(B1 PLD)

At one site during a follow-up visit, staff explained that the person we came to see was currently in a different part of the unit, as another patient was causing significant environmental damage on a daily basis, effectively meaning that some of the ward could not be accessed by other patients.

Some participants described the effects of repeated incidents of the ‘challenging behaviours’ of others on their own mental health, and the implications this had on their ability to move on:

You reach a peak of your health, so say like I’m well and I’m surrounded by unwell people, the behaviour of those unwell people would influence my well behaviour till I’m unwell, because the unwell people are more likely to be getting more attention and my progression – like going out and stuff – is being cut because people are kicking off and staff is needed …. So then that’s just going to agitate you and then you’re going to come from your peak to working downwards to being unwell again, then you’re going to have to start from the beginning …. So now you’re being prolonged in hospital.

(A2 PLD)

The same issues were described as a concern by various family members. In the example below, this related to other people’s reactions to the person’s offence:

I just think obviously that you’ve got other people in there with problems and I think that’s the only thing that’s getting him down is obviously that a couple of them, I think to what he’s said, have found out why he’s in there and obviously his offence and I think they’re giving him a hard time of it.

(A3 Family)

Potential positives

When asked what their life was like now, a number of participants compared their lives in hospital to what it was like in previous settings – either other hospital wards or prisons:

I’d say it has its perks, like, I would say … the atmosphere in prison is different to here and the progress here is different to prison, so it has its ups and downs.

(A2 PLD)

Interviewer: Out of all the places you’ve been, which have you preferred?

Here …. Because they weren’t nice to me …

Interviewer: So the staff support you better where you are now?

Yeah, miles better.

(A10 PLD)

Since I’ve come here I’ve got all the help I needed …. This is the best step ever.

(C6 PLD)

This was a particular focus for family members who often said that the current setting was the best for their family member so far:

She’s been in quite a few hospitals and I haven’t been impressed …. But the one she’s in now seem to work with her better.

(A7 Family)

Some family members added that they had worried for their family member’s safety and/or mental health in previous settings:

We used to go onto the ward sometimes and there were residents and patients on the ward just on the corridor, just laid there, not even in their bedrooms and whatever, on sleeping bags …. If he hadn’t have come out when he did he would have died because he were that bad when he went over to [Place 3], the drugs he were put on was unbelievable.

(B8 Family)

Despite the negatives described above, some people talked about activities, interests and going out on leave as positive features of what their life was like in hospital (see Box 7).

However, people also felt that the availability of these activities was often significantly limited by staff availability and other events and situations on the various wards:

It’s OK – I mean we don’t get to do a lot because there’s no staff.

(C6 PLD)

People who do a runner … – it just causes everyone else a problem when the ward clamp down on everyone.

(A5 PLD)

Interviewer: So how often do you do horticulture and woodwork and things like that?

Monday to Friday mostly, but we have a team … and yeah, I mean, we normally, Monday to Friday we normally aim to go up there every day, either woodwork … or we go in the garden on the unit. But this week, they’ve had to do other jobs, because, like, assessments for all the units, so we haven’t had as much this week.

(C7 PLD)

Other positive elements were the social bonds that people formed with others:

Me and my friend last Saturday, we went out together. I was one on one, she was one on one and we went to Primark together, two charity shops, McDonalds and Poundland and this week or next week we’re meant to be going to the zoo together. So I’m really getting on well. I like the girls now, I’ll miss them but we’ve all got to move on, you know what I mean? But I’m going to miss them, I will keep in contact with them …. They’re all nice girls. We struggle but we have to be there for one another. Everyone struggles. But I’m pleased the way they support me, the staff.

(A10 PLD)

While seemingly small in their own right, these acts of humanity made a major difference to people in a setting where they felt that so many of their rights and autonomy had been removed.

Family and relationships

People often mentioned family when they talked about what they wanted their lives to be like, either in terms of spending more time with their existing family, or in terms of having a family of their own in the future. Although some participants had difficult family relationships, many wanted to be near their family when they left hospital (see Box 9).

Many people also mentioned wanting a partner in the future, although some also had concerns that this might be difficult as a result of their time in hospital or offences that some people had committed:

I want a, like, missus kind of thing …. A girlfriend kind of thing. It’s just I don’t think I’ll be able to get one, anyway where now I’ve got like the regulations and stuff it’s going to be harder …. Because I don’t think women – I don’t think anybody’s going to want to date me – but you never know.

(A3 PLD)

Work

Lots of people wanted to have a job – either with a specific career in mind or just in general terms:

[I want to] go into the construction business … I grew up around construction and stuff like that and carpentry, it’s in the family traits and stuff like that so … yeah.

(A2 PLD)

Equally, some people were aware that their options might be limited as a result of their time in hospital or offences that some people had committed:

I like outdoor stuff, I like gardening, I like animals, but with my regulations it would be hard to get a job, that’s the only problem.

(A3 PLD)

Studying

Many people talked about studying or training as a part of their life outside of hospital – either returning to something they had studied before or starting something new:

[I want to] go to college … I want to be a qualified chef. My uncle’s is a qualified chef. So, I want to follow in his footsteps.

(C8 PLD)

[I want to spend my time] like going out to places and stuff …. College and things like that. [I want to do] English and Maths.

(A7 PLD)

Well, I was thinking maybe I might go not exactly an HCA [healthcare assistant] but I want to do something, study in college or whatever, see if I can come back as like a care mentor or something like that.

(A1 PLD)

Probably going to college or uni or something, I want to be a social worker.

(A10 PLD)

Interests and activities

Almost all of the people we spoke to had particular interests and activities they liked to do which were an important part of their identity and their future life. Some of these people had been able to pursue in hospital or prison (such as films, woodwork or animal care), while others were interests and activities people had engaged in prior to hospital (such as watching sport, baking, day trips, fishing or paintballing).

Just like what I said about getting out, see my niece, my brother and all them, watch films and stuff, go to bodybuilding competitions … I like things with the Queen, Breakfast Club and all that, Harry Potter. Go to Harry Potter World and get out with my family.

(C1 PLD)

So he’s from […] – and he absolutely loves […] football club and every day he rings […] radio, so he’s got a friend who’s the DJ and they talk to him and sometimes they put him on air and he’ll talk about […] football, but […] football team really – they know him – he knows the manager – he knows the team.

(B1 Commissioner)

In particular, many people talked about wanting a pet or to work with animals:

And then I’d have a little dog, so the dog could run around. Or a rabbit. I’d like a rabbit because you can train a rabbit. I’m having a rabbit when I leave.

(C7 PLD)

[I’d like a job] helping animals … – dogs or go to the zoo and help out.

(C6 PLD)

Volunteer work outside in a kennel or I like my animals, that’s what I want to do.

(A3 PLD)

Keep myself busy. And do voluntary work, like work with horses.

(C8 PLD)

Location and setting

All participants were generally very clear about where they wanted to live in future. Some people had a clear idea of the type of specialist placement they wanted to live in or about a particular geographical location, often relating to other elements of their lives described above, such as their hobbies or their family:

[I want to] live in a place in […], I can go fishing every day, I can work on the lifeboat again.

(B1 PLD)

Many people were also clearly aware of their own needs in terms of environment, company and support, and specified what they felt was appropriate for them. Some people wanted to live alone, some with others, and some with specific levels or types of support:

I’d like to live in independent living near my Mum. I want to live on my own, staff on my site and have my own place … and then there’s staff that live in and support you because I take a lot of meds.

(A10 PLD)

One participant had considered every detail of what they might need and how they wanted their future property to look and be laid out. They communicated this by drawing the house during their interview. This person had also considered their emotional needs, risks and behaviour and how their property could be adapted to manage that:

And also I would like a room just full of sensory stuff so when I’m upset or anything, I can go in that room. Instead of smashing my house up I can go in that one room and just throw everything around.

(C7 PLD)

Some of the people who worked with our participants had a detailed understanding of the person and were aware of their hobbies, interests and aspirations. Often, this aligned with what the person said they wanted:

He’s very clear he wants his own flat, he doesn’t mind if it’s in a shared house but as long as he’s got his own front door kind of thing.

(B1 Commissioner)

He wants a place of his own …. He wants to live where he lives in his apartment, he wants to have a drink at the weekends, make his meals, meet a girl, settle down and have some children and such. That’s his dream, nothing really special. That’s just what he wants, is just the normal life I suppose.

(A1 Social Worker)

Family members also often had clear views about the kind of life their relative would like:

[A3] is very… he just wants an easy life. I’ll tell you now, he doesn’t like drama. He admits, you know, he’s put himself in there, he admits he knows what he’s done is wrong …. So he likes everything straightforward. He likes to have a plan, if you know what I mean.

(A3 Family)

Some participants, like A3 above, also had long-term health conditions which were a concern to them and their family in terms of how their life might be, and a factor that needed to be considered when they leave hospital:

I would like to live on my own and have my own property. Because I have MS it’s going to be hard to live on my own and things – because, you know, if it gets worse – but I would like to … rely on myself.

(A3 PLD)

In some cases, however, what the person wanted their life to be like and what others thought was realistic or feasible were different:

And, again, in terms of what she wants for the future, she wants a relationship, she’s desperate to meet somebody. But, again, in the past relationships have been a trigger to antisocial behaviour and interpersonal violence.

(A7 Commissioner)

She’s not happy anywhere, she just wants a place of her own again – well she’s not going to get that.

(A6 Family)

He’s met a friend who’s a patient in [Place 7] who fits his victim profile and they’re going out on unescorted leave for walks together. This patient’s being discharged to […] – [so] he wants to be discharged to […]. We’re all saying ‘hang on a minute, you’re not going to […]’!

(B1 Commissioner)

Overall, while there were some significant differences in opinion and expectations about what might be possible in future, most of the people we spoke to had what appeared to be very modest, ordinary aims for their future lives.

Behaviour, incidents and risk

When asked what needed to happen for them or others to be able to leave hospital, many people talked about the importance of their own behaviour and the need to be seen to be ‘behaving’ well enough on the ward to be perceived as low enough risk to move to the next stages of discharge. While some people spoke about their own behaviour, other people talked about the behaviour of others:

Maybe their behaviour. They’re always kicking off. That would keep them in, I reckon.

(C1 PLD)

Their behaviour. Saying stuff like, stupid stuff, keeping them back. Getting into trouble. Not sticking to the rules.

(C8 PLD)

Basically what happened was I was causing a lot of …, and a lot of staff had to come and support the ward at night mainly, and some staff had been assaulted, some night staff and basically they said I’m a bit too much of a risk for low secure unit. So I got put on long-term seclusion. I was in there for 8 or 9 days and I was told by the doctors if I don’t improve when I get out, because obviously they were trying to get me into medium secure with the assessment and everything – so basically they gave me the last chance and I used it to turn things round. Then I got community leave. I should be coming off the constant obs this week as well.

(A1 PLD)

Some people also felt that previous incidents, even some time ago, could delay their discharge. In the example below, one person felt that a previous incident had been used unfairly to deny them opportunity for additional leave, which they saw as an important part of being able to prove that they were ready to leave hospital:

I know for a fact that Tribunals supported my leave, the doctors supported it, but the Ministry of Justice turned round and said ‘no’, and when they were asked why: ‘he had an incident a couple of months ago’ – and that was all, they held the incident against us. ‘But that was a mental incident where a patient had come in and disturbed him and [****] him off and he went for him, like anyone would in the community’. But that’s enough to lose your leave. I was like ‘this is diabolical’. It’s like they expect you to behave in a medical environment. It’s like they expect you not to be [****] off by another patient who’s had a mental episode.

(C5 PLD)

Completing treatment

While behaviour was the main barrier that people mentioned, they also talked about some people’s eligibility for discharge being conditional on completing particular therapies. This was particularly the case for people on forensic pathways who needed to do psychology courses relating to their index offence (such as around sexual thoughts and feelings, or fire-setting), and a number of people had done or said that they still needed to do anger-management courses. Others said that they needed to complete specific tasks (via occupational therapy) in order to build life skills such as cooking, self-care, budgeting or relating to others:

Yes, it was very helpful. That was very helpful. How to speak to women. I know I don’t like women, but I’ve got my reasons for that, but … I know I need to start behaving myself, really, because I’m putting myself in that situation now where I’m … stopping me moving on.

(C2 PLD)

So they started with anger management therapy which is now finished. He had I think all together 18 sessions – but it was spread, you know, every week. I was unhappy with that, sad, but they have to do it this way, they can’t do all of it, you know, they need him to kind of think about it and have some time to process, you know …. Now then he started to work on, I don’t know what was it called? What he did was he set a fire, OK, two years ago. So he’s getting a therapy for this, something to do with fire …. So now this course goes every couple of weeks again, so when that’s finished, you know, that’s kind of it …. That’s how I understood it from everything, you know. He needs to do this before he will be released and that’s it.

(A1 Family)

Some people were undergoing treatment which might be spread over weeks, months or years. While the family member above was clear that this kind of phasing was needed to enable the person to reflect and for the intervention to be effective, other people wondered whether the greater availability of psychological support might enable some more intensive approaches in situations where this was clinically appropriate.

On other occasions, there were delays for other reasons. Sometimes it was difficult to offer and start courses, because people were still being assessed or settling into hospital. For the family member below, disputes about the person’s diagnosis delayed the start of proper treatment:

In one of those reports was that his IQ is below 70 which is very, very low. But in hospital they said ‘that’s not true, he is like around 90, he is like one of the others’, you know, like, his IQ is not that low as they expected, so they needed to observe him for a couple of months before they actually started with something. I was actually unhappy about that because I felt they’re doing nothing, like, he had absolutely no structure, you know, he was sleeping in the day, he was up during the night and everything, I was actually questioning, like, whether this is a good idea.

(A1 Family)

Sometimes people were aware of issues with staff capacity, and that it takes time to assess people and arrange/start treatment for multiple patients at once, with some people having to wait:

At the moment, because I’ve only been here for two months, it’s a bit slow, because they’ve got a thing in place that it takes time to get everything sorted out, because it’s not just me here, so that stuff, they have to do everything for different people. So at the moment it’s going slow, I’m not allowed out.

(A3 PLD)

People and their families also were aware that engaging in activities and therapies were key to being seen as ‘behaving’, and often described feeling as if they would be less eligible for discharge if they did not take up what was offered. While the person below did not feel they needed speech therapy, for example, they decided it was best just to do what he felt he had been told:

They want me to have it and [I’m] not allowed to … to refuse stuff. I am allowed to refuse stuff but it looks bad on me because I’m refusing stuff … I don’t think I’ve got – I can’t say my ‘Rs’ very good … but a lot of it is because I’m from […], pit village – so I’ve got a different accent …. But if it helps me get out it would be helpful – but I’m not sure if it’s going to be helpful or not, because … it’s not because my speech is what I’m in here for.

(A3 PLD)

Trialling leave outside the ward

People felt that how they coped and behaved whilst on leave (whether in the hospital grounds or in the community, and whether escorted or unescorted) was a key measure of whether they were ready to leave or not. However, getting access to (or increasing) leave was not straightforward – and could lead to significant delays. For leave within the hospital grounds, one MDT could agree and implement increases quickly, sometimes on the same day. However, for people on forensic pathways and subject to particular legal restrictions, the Ministry of Justice (MoJ) had to give permission for leave in the community, and for any changes to the amount or duration of leave and the level of support required. This could be a lengthy and frustrating process, and the people whom this affected felt that decisions were made without proper consultation or a detailed knowledge of their circumstances, sometimes in opposition to their clinical team:

They have written off for unescorted local now about four, maybe six times and been turned down for every one of them …. Because I’m sectioned, it has to go through Ministry of Justice so they’ve turned me down and hopefully I’ve just done a piece of psychology work which the Ministry of Justice asked for and so once that’s done, they’re going to write back off again and hopefully this time with that information, fingers crossed, definitely they might just say ‘yeah’. Because they’re just going to get bored with turning me down at one point.

(B6 PLD)

All they [MoJ] do is read reports – they don’t come to see me, they don’t talk to me, they don’t know me.

(A5 PLD)

Another person described how they were ready to leave hospital and looking for a place in a locked rehabilitation service. However, they feel that the MoJ intervened and said that this would not be possible until the person had undertaken more unescorted leave in the community, and so they were taken off the list of people to be discharged. When they requested unescorted leave, this was denied on three separate occasions on the grounds that there was a risk of assaulting other people and a risk of substance misuse. However, the person was already having unescorted leave in the hospital grounds (where they point out they would be perfectly able to assault staff, visitors, families and other patients if this was a genuine risk). They also feel that they cannot prove they will not misuse substances unless they have unescorted leave, so are effectively stuck. More generally, they wonder why being able to be out unescorted needed to be a stipulation to move to another locked setting.

In addition to the MoJ, some people felt that the involvement of other external bodies, such as Mental Health Review Tribunals, could be a sticking point, and not always in agreement with hospital staff:

It’s a test, so my Mum said it’s a test, and I agree. It is a test at the end of the day. They want to know what my actions are going to be. I took it all right. I rang my solicitor and said …, look, they want to keep me in, and all this, which I disagree, I really … but like he said, he’s not the boss, the psychiatrist. He’s not the boss, it’s down to the judges.

(C2 PLD)

Other people felt that their ability to complete leave was compromised by the availability of staff to support them to whatever level of leave they were currently entitled:

But sometimes trouble with staffing, so staff [are a barrier] sometimes …. It’s not good at all.

(B3 PLD)

Well, [leave] that’s a big problem, that is, because it’s … the lack of staff and that on here. Sometimes some patients can’t get out, because of the lack of staff.

(C2 PLD)

Person B5 did not have their interview recorded, but said that there is a lot of bank and agency staff, and this affects when he can go out. Recently, there was the right amount of staff – but not regular staff – and he needs people who know him to support him when he is out. He also said that people are more likely to ‘kick off’ when regular staff are not there.

This left some people feeling in something of a ‘Catch-22’ situation where they felt they needed to successfully complete unescorted leave to prove they can be discharged, but might not be given permission or be able to take leave – leaving them stuck.

Perceived lack of suitable placements

For many people who were ready for discharge, it seemed that the main reason for delay was around identifying and organising a community placement. The most frequently mentioned issues were simply that there did not seem to be any existing providers with placements that were:

1. appropriate for them in terms of the environment and location;

2. where the provider had space or was able to create a placement;

3. where the provider was willing to accept the person – that is, they were deemed ‘suitable’.

Because both people’s specific needs and providers’ criteria varied so much, each time a person was referred to a provider, a separate process of checking availability, assessing the person, visiting and scoping the potential place needed to happen. If the ultimate answer was ‘no’, then this complex and lengthy process – which could take weeks – needed to begin again. For some people, this might happen multiple times before they were finally able to leave.

[A key barrier is] places not being able to accept …. There aren’t enough places.

(B3 PLD)

This person then asked their support worker to step in to help explain their specific situation and plans in place. They both explained that B3 had been referred to four different places with different reasons for not being accepted – two due to concerns about the person re-offending, and two due to the person’s mobility (they also had a long-term health condition):

We have various plans in place. We are just stuck with finding a placement …. We’ve got the conditional discharge from the Tribunal, we’ve got all the assessments done, we’re just struggling to find a placement that will accept [B3]. So it’s an ongoing process, isn’t it? So – and the Parole Board’s in place as well – so everything’s in place barring a placement.

(B3 Support worker)

Given that identifying and making referrals to a potential placement could take weeks or months due to the complexity of the process and the very limited capacity of hospital staff, providers and other professionals such as commissioners and social workers to write reports, complete assessments and undertake visits, it is easy to see how this process could add months or even years to the length of a person’s stay in hospital.

Inappropriate placements

In the example above, one of the placements explored was up several flights of stairs, despite the person saying that this was completely impossible for them to access due to their disability. However, this did not seem to become fully apparent until significant time had elapsed waiting to see if the person would be accepted by the provider, and the process had to begin again. Other people were offered placements that turned out to be inappropriate due to conditions on their discharge relating to their index offence. In the example below, a family member recounted discovering that their relative – whose original offence was a sexual offence against a child, and who was still deemed a risk without appropriate support – had been given a potential placement next to a school. This person had been deemed ready for discharge 4 years prior to the interview and, at the time of the interview, was only just starting to move into a community placement:

First, obviously somebody had to go and find this place what would be equipped for him and then I’d say even before … it took about 18 months …. There were a few places, so we had a place potentially at […] and we were going through the motions, then at the very last minute this bungalow, at the very last minute, we’d never seen this bungalow, it came about that it were next to a school or next to a walkway to a school, so whoever … had suggested it in the first place – I would love to have that conversation with them. And I think it was the commissioners that must have gone and saw that it were next to a school …. So that was off the table immediately.

(B4 Family)

Another person was offered a placement in a location they had previously lived in where they had struggled with their mental health, anti-social behaviour and substance abuse. A family member felt it would be potentially very damaging for them to return to that environment. However, after weeks of assessment, this meant that the process of trying to find a suitable placement had to start again:

I mean they got her one place in […] but she can’t go to [there]. She’s had too much trouble there … I had to stop her going. She’s barred from the centre of […] and she’s known and she would have got a lot of trouble, so I got in touch with the social worker and explained it and they stopped that. Because that would have been a no-no.

(A7 Family)

Delays setting up placements

For many other people, a suitable community placement or provider had been identified, but the process was delayed due to the logistics involved when setting up an individual package. Once a provider was identified, properties sometimes had to be purchased and, in some cases, modified. Staff then needed to be recruited and trained – all before they could even start preparing the person for their transition out of hospital:

The delay is that [the provider], whilst they’ve offered, they don’t have the building yet and they don’t have the core team …. So we need this meeting next week to take place so that they can then be informed, so they can start looking – I don’t think there’ll be a delay around the property – I think the delay will be the recruitment of the core team.

(A7 Commissioner)

On top of this, some people experienced delays due to disputes over funding and who was responsible for what – some of which were witnessed directly by people and their families. This was universally a source of significant anger and frustration:

I think when they [the community provider] did say ‘yeah’, then there were a bit of toing and froing and who were responsible for the funding …. So nobody could agree on that and that went on for months, just I can’t … I really … this is a person’s life we’re dealing with.

(B4 Family)

I think the biggest thing is there’s too many cracks in the services and it’s easy for people to say, ‘It’s not for my team’… I think people use diagnosis as a way of excluding people now.

(B6 Commissioner)

In the example in Box 10, one person was stuck because of a dispute about their diagnosis, which then affected which community team would be responsible for them and which providers would accept them. This person went into hospital with a diagnosis of a learning disability but had repeatedly been assessed and found to be ‘borderline’, and their childhood diagnoses of ADHD and autism were disputed. To the person’s family, the label given to their relative does not directly affect the specific nature of their needs – which, in their view, should be the focus.

A similar issue was also noted by hospital staff:

I’ve also had disputes from the clinical team that there was a forensic team that could only work if they were supported by a CMHT [community mental health team] as well, and then the CMHT wouldn’t pick up this person because they didn’t feel that they were set up to deal with someone with not just an ASD, [but] a personality disorder. So, there was a lot of dispute about them picking them up, because they didn’t feel that they had that expertise to look after that person. But that was the only reason they had to accept in order for the forensic team to pick them up. So, there’s those local disputes, it’s not clear if they will accept the case, they also take time as well.

(Hospital staff, site A)

The role of specific professionals and supports

People’s views on which professionals were helpful (or not) varied significantly, depending on their individual circumstances and relationships. While person A1 did not feel that they had needed physiotherapy and so had listed it as ‘unhelpful’, person A3 described a bad experience with their social worker not being available or present most of the time. Person A8 had mixed views as to whether the various professionals involved in their care had been helpful (hence placing them under ‘unsure’), while person A6 did not find ward staff helpful at all in moving them closer to discharge.

Most people who mentioned specific professionals found their consultant, their solicitor and their advocate helpful. Family members gave similar responses, particularly around the role of solicitors in fighting for their family member to be able to come out of hospital:

I don’t ask [the hospital] any more, I ask the social worker or I actually email his solicitor and find stuff that way, because I find stuff’s easier to get that way. It’s wrong, but I’ve found that’s the way to do it …. He is a criminal law and mental health law solicitor and he obviously knew something that they didn’t, but certainly things started shifting. Maybe they realised, [****] hell, he’s got a solicitor, we’d better get our backsides moving here like, you know.

(B3 Family)

However, there were also some notable exceptions, including some people and families who felt the consultant was working against them to prevent discharge:

I’m sure that [****] psychiatrist is trying to keep my son locked up forever.

(B3 Family)

In addition to the role and contribution of specific individuals, people spoke about the value of specific treatments and broader activities that they felt had helped them progress towards discharge. These ranged from hobbies that helped occupy people’s time in a meaningful way (see Life in hospital), to services and interventions such as psychology, occupational therapy and physiotherapy (see below). People also spoke positively about speech and language therapy, courses about forming relationships, and courses about dealing with drug and alcohol issues – where specific needs could be met via a professional intervention or a specific programme that the person could undertake as part of getting ready to leave hospital. Several people also spoke about the importance of positive relationships with wider hospital support staff, rather than just the lead clinicians who might mainly see the person in formal meetings.

Psychology

A number of people highlighted input from psychology as particularly beneficial, especially where they were on a forensic pathway and in terms of helping people cope with the implications of their offences:

The courses what we’ve been talking about doing will help me to learn about what I’ve done and how to cope with it on the outside and to cope with it in the public eye.

(A3 PLD)

The psychology ones …. He’s doing quite a few courses with them which obviously in prison he wouldn’t have done …. More likely to help him move on when he gets out because he obviously can’t come back to [place X] and he can’t go back to where he was born. So wherever he’s going to be, it’s going to be by himself. I mean I’ll go and visit and do what I can but he’s going to be by himself.

(A3 Family)

When I started [a particular type of therapy] I didn’t want to do it, I was quiet, refused to talk to anybody, but then I got into it and I enjoyed it. But it’s turned my life around completely. I look at things a little bit differently. Some days, yeah, I do scream but I don’t hit anybody any more … I think [the therapy’s] a good thing for anybody …. [When I’m in the community] I’m going to see if they do something like that and carry it on because I think that’s really good for people who are in my situation and feel like self-harming and everything else.

(C6 PLD)

Occupational therapy

Occupational therapy was also seen as helpful in terms of preparation for living in the community, supporting people with life skills such as self-care, cooking, budgeting and personal safety:

I just need to show that, show them that I can cook, not cook but make meals, so I can show them that I can drink tea, make a microwave meal, so I need to show that I can do that.

(B3 PLD)

They’ve been asking for help when they need it, kept on doing sessions and things like that to help them move on and to living on their own and to save. The biggest part I need to do is save because when they’ve got a bit of money, they spend it like that.

(A10 PLD – talking partly about other people, hence ‘they’)

Meetings and plans

Although most people stated that most or all of the meetings about their care were helpful, some were seen as more helpful than others. More legally binding meetings such as Mental Health Review Tribunals and Manager’s Hearings tended to be talked about more positively, possibly because there were clear and immediate decisions arising from them:

So the Tribunal have said why is he still here? Why haven’t you moved him on? …. So if they don’t move me they might say ‘right, what’s he still doing here?’ and they might put a discharge to somewhere, to find somewhere for me from here.

(A2 PLD)

Although not many people seemed to know when they might be leaving hospital, some people said they had a plan in place and valued regular meetings, not least because these helped to provide short-term feedback on progress and gave people a sense of where their hospital journey was going:

I would say if you have stepping stones for people to be obliged to like, stick to them …. So like being on the Asperger’s spectrum … – I like to plan my steps ahead … – so if I do this then I’m going to get more time out or if I behave in this manner then I’m looking forward to home leave and stuff like that. But then if they start adding things in just there and then it starts messing up everything and people will start to get agitated and stuff like that and it will affect their health because you’re adding things in that wasn’t originally on their plan …. So if there’s stepping stones – keep to the stepping stones –… don’t just add [extra things] there and then.

(A2PLD)

Well what I like about mine [discharge plan] is I’ve got a date when I’m getting out … but I’ve got to do all this to try and get out …. So, like, a plan, so we’ve got something to work towards …. Everybody’s head works different, but I like to plan and then I’ve got something to work towards.

(A3 PLD)

For many people, what helped (in time) was a person’s ability to manage themselves without too many ‘risky’ incidents whilst on leave – firstly in the grounds and then in the community. This was seen as a key way of proving your ability to cope with being in the community and therefore your eligibility for discharge:

I would say … that some people that are willing to work with the system, do the courses and stuff, they, like I say, like the managers and staff, like they provide more – so like more leave and try and encourage you to get out more. So it’s like starting you off again in the community – getting out in the community and stuff like that is basically our first step to getting out.

(A2 PLD)

Establishing a life and a support network outside hospital

People talked a lot about the support available beyond hospital being vitally important. This was partly in practical terms (e.g. the simplest and most common helpful factor on talking mats being ‘having a home to go to’). However, it was also important to have a support network in case the person started to struggle:

We need a support group for him. We need, I don’t know, it’s hard to say. We need something in place where if he [thinks …] that he’s in danger he can call someone straight away.

(A3 Family)

At least he’s got a nurse with him because my biggest worry was they’d let him go into town on his own … I thought if they let him go into town, because of the way he is, he doesn’t understand if they say things and stuff, you know people talking …. Also he’ll talk over you as well and some people don’t like that. I thought, I could just see someone start to argue and shout at him and then he’s going to get all flustered and … I’m bothered about him getting hurt at that point, but I’m also bothered about what that’s going to do, what he’s going to do later on because of that, if you see my meaning …. He might be living away, but he has a carer with him at all times. He’s not allowed anywhere on his own, which I’m really pleased about, even to the local shops.

(B3 Family)

More broadly, some people talked about the importance of building a meaningful life with enough going on to motivate them to keep going and stay well:

It’s easier to stay on benefits but I think a job and working or something is better than just working voluntary. To stay on disability living allowance, you’ve got nothing to fight for then, you’ve got nothing to keep – you need to keep your job, you need to keep that animal, you need to keep a roof over your head, instead of just going on benefits and just getting everything paid for you. You need something to fight, fight for – I need this, putting in place a house, putting in place any job and stuff.

(A3 PLD)

A few people mentioned inappropriate housing – one specifically mentioning hostels – as being very unhelpful for a successful discharge because of the lack of support in such settings, and the risks that might arise if there were people with mental health and substance abuse problems.

Values and approach

People in hospital, their families and professionals alike all spoke about the underlying values and approaches that underpinned a good discharge. Many of the professionals we spoke to felt that one of the most important principles that helped to make a smooth transition or a quicker discharge was seeing the person beyond their labels and immediate needs – as a human being – instead of focusing on the risk they might pose to themselves or the community, or on the cost of their care package:

I think fundamentally if this was a member of your family how would you want their discharge and their pathway into the community to be – what would you want for them?…. And to see the person that we’re talking about as an individual with a right to live their life.

(B1 Commissioner)

It’s about being inclusive. It’s about working with people. It’s about helping [B4], for example, with his hopes and his aspirations. It’s about supporting service users to take responsibility and be accountable …. Say, if an incident occurred. What happened at the time? Maybe [B4] hit out at another …. Threatened a member of staff. So, to explore … what was happening at the time, how he was feeling? Helping people to reflect on that, and together as a community, to try and put things right and create that sense of community. So, those are the things that I’m trying to promote, but never minimising at all the risk to others and the public and the very nature of why people are in here. So, it’s that balance.

(B4 Social Worker)

Family members also talked about how a person-centred approach helped their family member progress towards discharge more quickly. In the example below, the person needed to improve their self-care skills, partly to get closer to discharge, but also to improve their overall well-being and quality of life:

I just think that they treat her like a person, whereas before I’ve tended to believe she’s more of a number. Yeah, they take her out more, you know, and at the moment they’re teaching her how to look after herself which is, she’s never done …. Cleaning, washing and things like that, brushing her teeth and stuff.

(A7 Family)

Understanding the person – personalised transition support

Related to this, a strong theme emerging from all participants was the importance of understanding the individual person and their unique personality, needs and challenges. They also noted the importance of assessing this properly, communicating these needs adequately between the hospital and community services – especially to the provider to which they might be discharged – and building this understanding into structured, personalised support for that person around their transition:

He needs the service specification that’s written for him, that he was part of writing. He needs that going out to the providers and for providers to actually read it and listen to what he’s saying he needs, because I think sometimes providers go out, do the assessments and they think ‘oh we know what you want’, when actually you’ve not listened to the person that you’re assessing.

(B1 Commissioner)

The … the community forensic outreach and liaison service … – they’ve been really proactive and supporting [A7] in her preparation for a transition. She has weekly contact with the caseworker from the … team – that’s been consistent I would say for the last eighteen months – personnel have changed but the two girls she had previously and the current worker, you know, they’ve maintained real high levels of contact with her.

(A7 Commissioner)

I think on the plus side, I think [the manager], where she is today, and a member of staff from the home who I think would become her key worker possibly, they visited the hospital and they had a sit down meeting with all the clinicians that was involved with her. I think they’ve got a pretty good handle at the home about what to expect, so that communication was good, so [the manager] and this other lady went to [deidentified placement] – psychiatrist, psychologist, clinical nurse, the social worker, whoever, there was a big on site meeting and they were – I think cards were laid on the table – and because I said something to [the manager] and she said ‘oh don’t you worry, I know all about it’, so I got the impression that – so I think that would be a good starting point for somebody coming out is that the person who is going to be looking after them needs to be – needs background – needs to know – the good and the bad.

(A6 Family)

To help build these relationships, many people talked about the importance of family involvement – both as a motivator for people to complete other necessary steps towards discharge, but also for supporting the person more generally:

[Family] – yes, that’s a big part of me wanting to get out for them …. My Mum said to me, we need you, and I’d say I need her, I need my family.

(C1 PLD)

It is helpful when my Mum’s here ’cos I find it hard to explain stuff over the phone, so it’s like it’s helpful for my family and stuff, yeah, I’d put it in helpful. We’re going to start having them in that ward round, because we need to talk about my health issues, so she said she’s going to bring it to ward round, so we need to have a talk about it.

(B3 PLD)

For one person, family were also crucial in managing complex finances when moving to a new property after over two decades in secure hospitals. Without family support (which came at significant personal cost), this person would likely have been delayed even further:

Right, okay, so we need to get this house some furniture, so we had to go through a process where we had to follow [deidentified place]’s rules/policies to get three quotes for each item … – anything over £200. So at this meeting I said, I had breast cancer last year, so I was off work at that moment in time, I were having chemotherapy treatment …. So I collated all the quotes, sent them to [case worker] and then … because again he’s got this substantial amount of money, believe it or not, he went over the threshold – so he had to pay for his own legal fees. I know, it’s mad. They’d had him build this money up in hospital for 27 years.

(B4 Family)

Complexity and multiple stakeholders

Time and time again, hospital staff and commissioners talked about the sheer complexity involved in organising next steps for people leaving their current ward, whether this be to a less restrictive hospital environment or into a community placement. The range of organisations, teams and individual workers, coupled with the preparation needed for people to feel comfortable moving to new settings, created added time at every stage of the process, even with all the right people seemingly on board:

There’s lots of people involved in the discharging of the patients. So, you have the case manager, you have the CCG and all the funding being sorted out, and a number of processes that take place. So we often refer to a six-months’ period that we would say that actually, this patient might be discharged within six months, and then at that time we start linking them up for discharge and saying, actually, let’s start that process, because it might well take that length of time to actually find a place, if you’re funding, and then to move into it, and that’s even with the placement, you know, being in existence already. The staff and everybody in there – so there’s something in the system, once we flag it up, it’s taken some time for them to get into it, you know.

(Site A hospital staff focus group)

This experience was shared by the Consultant below, who described some of the delays that can easily creep into or even derail the discharge process where someone has ‘non-standard’ needs (almost by definition, this will be everyone involved in this study and perhaps most of the Transforming Care cohort):

So, providers are now saying that they will need typically nine to 18 months to set up a specialist package …. Even if there’s a property available, the model of provision now tends to be that people will recruit a bespoke team. So, they will recruit staff specific to an individual, and that’s tricky. So, as an example, we had a young woman admitted to us …. She got told that she was moving into a new property and the placement that she was in broke down, so she came into hospital, which of itself is an inappropriate admission, and we were told it’d be two to four months for them to complete recruiting staff. She was only discharged last week for no reason other than the provider couldn’t recruit the staff. We could say that that was in some part due to COVID and recruitment and issues like that, but it’s not unusual. So, people who are fit for discharge, and then other people are needing single occupancy – and care providers, rather than having properties, will then go to the market and buy a property specific for an individual, which obviously takes time, and then there’s usually environmental changes, a wet room and handrails or fencing for the garden, whatever it might be, or in the most extreme, complex-end people will be building bespoke properties. So, that tends to be the pattern for the non-secure end of assessment and treatment. People will come in, some of that’s appropriate, will be fit for discharge, typically, in three to six months, and then wait another, anything from 9 to 18 months, so on average another year waiting for that property to be available.

(Site B hospital staff focus group)

Similarly, the social worker below anticipated potential delays, even before the decision had been made about where the person should go next (particularly if the decision was to go to a community placement rather than another hospital setting):

If there’s locked rehab and there’s a bed available, that process could be a couple of months, couldn’t it? By the time funding’s agreed and you’ve allowed for some transition work, that could be a number of weeks to months. If it’s a community package, then that’s going to be more complicated, because that will depend on if the property’s already purchased, or if they’ll be looking at purchasing a property. Whether the staff team are already in existence or whether they would recruit specifically a staff team to support [person’s name]. So, it’s really going to depend on where that lands. It could be a community service that already has a set-up property and support team and they’re discharging somebody and [the person] can move into that service, which again, would just be weeks. If they’re talking about creating something more for [them], then yes, you’re talking about potential environment, property and staffing. So honestly today, I don’t think we could put a reasonable timeframe on it.

(A9 Social Worker)

Of course, this begs the question as to whether more could be done to plan for discharge on admission, as is meant to be the case in other settings (e.g. when older people are being admitted to/discharged from general hospitals). If someone is going to need a property to be purchased and their own staff team to be recruited, then it makes no sense to wait till they are ready to be discharged before starting such processes (see Chapter 7 for further discussion of insights from the broader hospital-discharge literature).

Processes and tools

Many participants described particular tools and processes surrounding both admission and discharge as being ineffective, unhelpful or actively hindering people’s ability to move on in different ways. This ranged from legal tools and policies at a national level to the specific assessment tools and processes used by providers.

In the example below, a psychiatrist described the multiple steps involved in the discharge process, with each assessment adding at least weeks to a discharge timeline. With community providers all using different assessment tools, which do not necessarily correspond to the ones used by the hospital, doing this repeatedly could create significant periods of delay after the point at which the person is deemed ready for discharge:

So we go to the case managers and we say, look, I think this patient could move into supported accommodation, that’s what I say, 24-hour support accommodation, and I think we should start looking for that, and then it takes time for them to find that. So, I don’t know, it might take three weeks for them to identify those ones, and then I think there’s … because I don’t know exactly what goes [on], I just experience the periods of delay. Then they come back and they send us an assessment form, and then it takes a while to write the assessment form, to fill it out properly. Then we send that off and they take three weeks or so to read through the form and see whether it’s done appropriate[ly]. Then they come and see the patient, they think about their provision, ‘do I have to make some adaptations?’, and that takes some time, and then they do some joint working, and yes, that whole process, and then the other bit is agreement of funding ….

(Site A hospital focus group)

Other hospital staff felt that risk assessments could conflate behaviours arising from a reaction to the hospital environment or behaviours which might arise out of someone’s learning disability, with what they called ‘intentional violence’ and a future risk of offending. This could then raise the person’s ‘risk’ profile, especially in relation to decisions by the Ministry of Justice about leave, or community placements’ assessments of suitability – resulting in the person being deemed ‘too risky’ for the next stage of leave or unsuitable for a place at a community provider:

There’s a poor differentiation between challenging behaviour and understanding that as different from instrumental violence, and yet the risk assessments that are prescribed by the NHS for inpatient services such as the [name of risk assessment] makes no differentiation between challenging behaviour – which is a mainstay of a hundred years’ worth of working with people with neuro-developmental disorders – and the forensic issues of things like unlawful killing and arson and murder and some of the other stuff. Whilst those two things are all jumbled up together, what it forces people like [my colleague] and other very sensible people to do, is to count problematic behaviour …. So one of the problems that everybody runs up against is this idea that somebody shouting because the lights are too bright or it’s too noisy on the ward is a risk indicator for still doing wicked things to children. Huh? How does that work then? Well it doesn’t, does it?

(Site A hospital focus group)

Legal status

Various practitioners talked about how the legal status of a person detained or treated under different sections of the Mental Health Act meant different things in terms of the support they might get after discharge, with a series of potential pros and cons to this. The social worker below expressed concern that people with learning disabilities who have committed offences might not get the same support to reintegrate into society and avoid reoffending as someone who has come out of the criminal justice system with support from probation and other agencies:

So for anybody coming out of the criminal justice system you have probation, you have all these safeguards in place … we have the conditional discharge options and things like that. But often they skip that because they’ve got a learning disability so we’ll make that exception and they’ll come on a Section 3 – perhaps, I’m generalising – but they’ll come on a Section 3. They haven’t been sentenced or properly convicted of the crimes that they’ve committed, so they don’t have … the luxury of being supported through probation, proper discharge things, and then they re-offend and you’re just going round in these circles. And actually they get missed because they’ve got a learning disability and you’ve made an exception for them because ‘oh bless him’, and that’s not OK because actually that’s the opposite of what you want to achieve. But it becomes the default.

(Site A hospital focus group)

However, it was not always seen as ‘better’ for a person to be detained under a forensic section. Often, when a person’s legal status required the Ministry of Justice to give permission for leave, discharge or transition visits, this added significant delays to the process (as described in the previous chapter), simply through waiting for decisions to be made.

Others wondered whether current mechanisms such as Care and Treatment Reviews (CTRs) had enough ‘teeth’ (legally or in terms of expertise/status) to be effective, particularly compared to the statutory powers of Mental Health Review Tribunals:

Unfortunately, in my experience so far, I haven’t been to a CTR … where it does something which … wouldn’t have happened before, that then results in the patient being discharged …. The CTR, I don’t know, they tend to … they make suggestions that might optimise a patient’s treatment pack, but it hasn’t been linked to them being discharged … I don’t think the people who are involved in that are necessarily the right individuals, the right group. They don’t have the power, necessarily, to discharge someone. They’re not able to challenge greatly the view of a consultant …. So, you could say the function of the CTR seems to be better served by a Tribunal which isn’t set up for that purpose necessarily.

(Site A hospital focus group)

Providers also noted they often felt as if hospital staff did not trust them to comply with the different legal frameworks, restrictions and reporting requirements of people detained under particular sections of the MHA:

I think legal frameworks often play a massive part and I think, you know, there’s a lack of understanding across our sector about what’s the best legal framework for people to come out [on]. But fundamentally I think it’s about, you know, people’s understanding about what the community can do …. [We have] RCs and people in hospitals going ‘we don’t even know you. So until we’ve got a relationship with you, why would we want to send somebody out into your package of support?’ and therefore you’re in this vicious circle.

(Social care provider)

Disputes over responsibility, next steps and funding

Participants described a number of situations in which multiple stakeholders and complex legal requirements led to disputes over clinical responsibility for the person in the community, as well as disputes between health and social care, and between different geographical areas, as to who should be responsible for funding the person’s subsequent care and support:

There’s an application that goes through to the local council and they sit around a board and discuss whether the funding’s approved, … and then there’s a debate whether it’s more social or health, and then, so sometimes that can take some time, and actually, they might come back with a decision, we have to challenge the decision, and then, we say, actually, this patient in the community, they need a forensic team to support them, in order to manage them properly, and then there’s disputes locally over which team it is that looks after them, and then there’s … say if they’re forensic, then they need a both clinical team and a social supervisor. Their social supervisors, depending on where they are, may dispute that a patient falls within their category.

(Site A hospital focus group)

In one multidisciplinary team meeting, staff described delays finding a consultant who would be prepared to take responsibility for a person (B2) once they left hospital. In other meetings (B3 and B6), the team discussed disputes over which community mental health team would be responsible for the person, relating to both the geographical area and the specialisms of the teams (whether it should a forensic team, learning disability team or mental health team). One commissioner clearly described multiple discussions behind the scenes about which community team might be best to support a person:

She’s ready for discharge, the CCG have now got an identified placement, they’ve approved the placement, but where we’re at is the meeting next week is to talk about which community team will pick her up because … she’s always been under learning disability services and myself and the [learning disability] team were adamant that’s where she should remain, as is the CCG. The Trust are saying ‘well actually does she need the SCFT team’, which is the Specialist Community Forensic Team – and we’re saying ‘no, she needs the learning disability … team’. So there’s a meeting next week to talk around that and who will be the appropriate [responsible clinician].

(A7 Commissioner)

A similar observation was made by a provider during a MDT meeting for a person due to move into one of their properties:

It just feels like it is … money orientated, and then you get the health and social care thing that goes on, you know. I sat in a meeting a couple of weeks ago and I can’t tell you how many commissioners and local authorities, and they were literally ‘this man’s being held like this and you’re arguing over …’ and [unidentified place] have never even – he wasn’t even born there, but they’re having to fork out all the money because they’ve got the values, do you know what I mean?

(Provider 1)

The broader impact of policy and austerity

Some people felt that funding issues had become less of a problem since the Transforming Care policy agenda, which was perceived to have created a strong impetus to discharge people experiencing lengthy stays in hospital. However, many people felt the longer-term impacts of austerity and budget cuts to local Councils had led to lack of staff and specialist provision available in the community:

We’re all strapped for staff – nursing, medical staff, local authority – and I know budgets are being cut – and I know the care managers – their hands are often tied – they’re working within tight remits – it’s not always them – it’s the bigger and the wider organisation structures and budget restrictions.

(B1 Commissioner)

Historically, I’ve faced challenges with funding, although I have to say, in recent months, the funding is less of an issue …. But there is still, obviously, money is always going to be money, isn’t it? So, there remain funding issues at times, especially in community provision.

(B1 Social Worker)

Lack of appropriate placements

A wide range of different professionals felt that there were simply not enough placements available that met the needs of people leaving hospital (see Box 12). Other staff identified particular gaps in terms of community services for people who have a learning disability and a personality disorder, for people who are transgender, and for some women:

We don’t have the balance between the inpatient expensive hospital forensic provision versus the corresponding step down in the community that adequately meets the needs of service users when they’re discharged, and particularly female service users with autism for instance.

(A8 Commissioner)

This was also the case for discharges that might involve a step-down in the level of security or restrictiveness of the setting (i.e. a person moving from medium- to low-secure, or a person moving from low-secure to locked rehab):

I would probably say it’s around the flow and the movement of patients between hospitals …. So, for example, we might have an influx of people from medium needing low, but low haven’t got any movement their end. That’s one of the …. Certainly historically, that’s one of the main ones. There’s a lot of people sitting around waiting for low secure beds.

(Site B hospital focus group)

Lack of staff (hospital and community)

There was a widely held view – from hospital and community services – that one of the main issues contributing to a lack of suitable and readily available community placements was a struggle to find and recruit qualified and adequately trained staff. Almost everyone talked about how strained services were across the board, best captured by the following comment from a commissioner who was in the process of leaving the sector:

People are so tired. There’s not enough staff in, and I know I’m contributing to that by leaving, but you know, there’s not enough to be able to do this, at the moment. We need something to help us, because health and social care are going to implode otherwise.

(B5 Commissioner)

This view was supported by other participants, including a ward manager who described issues with staff shortages shared by the hospital and community services:

It’s the pool of people, the numbers of staff, it’s a national shortage isn’t there? They physically don’t exist. I think we run on low numbers every day. I don’t think there’s ever a day that where our numbers with regards to what would be our ideal staffing levels and I think we’re not alone, you know, the community services are faced with the same challenges.

(Site A hospital focus group)

In one multidisciplinary meeting, person B8 was hoping to be discharged to a community placement. While the identified provider had been trying to recruit staff, only two had been appointed and seven people were needed for a core team. The regional care co-ordinator directly attributed this to a ‘national staffing crisis’ and the team agreed that there was a widespread problem with recruitment to the sector. The same person had still not been allocated a social worker since his admission months before, and so had no social care representation at the meeting.

Some staff talked specifically about a lack of staff in community mental health or learning disability teams, in this case the local intensive support team for people with learning disabilities:

They’ve only got three nurses in that team currently and they’re operating over seven days …. So when somebody’s in crisis and you want that intensive, robust planning that we’ve just talked about …. Our intensive support team are really struggling – they’re all fantastic – they’ve got a wealth of knowledge – they’re really good – but they’re just spread too thin.

(Site B hospital focus group)

In addition to general staffing pressures, many hospital staff and commissioners alike expressed concerns about community providers having staff with the right skills and expertise to support people with complex needs, and about the difficulty of ensuring consistent, familiar staff who know the person well and can support a successful transition (see Box 13).

This was perceived to be a particular issue when someone had committed a serious offence:

When patients are in secure services, these are people that have had really complex trauma, got really complex and high-risk offending behaviours, you know – to work with these people in the community it is challenging, it’s really challenging. And in terms of the skillset, I’m not convinced – and I know colleagues and partners and stakeholders aren’t convinced – that there’s the right skillset in the community to make sure these people don’t come back into hospital and to make sure they have got a quality of life that’s safe for themselves and the public.

(B1 Commissioner)

There was also a widespread impression that staffing and service pressures were preventing front-line staff from accessing training on fundamental issues such as safeguarding and communication. For example, participants in the site A hospital focus group said that:

I think, you’re just in essence taking people off the street and then expecting them to just go and work with these really complex patients …. And we’re surprised and disappointed with them when they don’t do it right …. So there really isn’t, well there have been some attempts to get some standardised training packages for autism and learning disability over the years, but they’ve not made it to the shop floor.

People haven’t been able to be freed up to attend [training]… I think I delivered the ‘Need to Know’ safeguarding that hadn’t been delivered for 18 months, so you’re thinking [it’ll be to] like huge amounts of people and I think it was to two people in the end. It’s [****].

Safeguarding is not even specific to this special venue is it? It’s just safeguarding, everybody ought to know safeguarding. So trying to get some even what I consider to be fairly basic training about how to moderate your language when talking to a patient with intellectual disability or autism and how to make those necessary, we don’t do that, we don’t deliver that training.

Limited awareness of community options and step-down processes

While they experienced numerous difficulties discharging people to community services, some hospital staff and other participants felt that there can also be a lack of awareness from within the hospital of what was actually possible or available in the community (in terms of the range of providers, the types of services available and/or the complexity with which some community services work). This was particularly the case in medium-secure settings which had previously tended to ‘step people down’ into low-secure, then to locked rehab or to the community. Over time, and often because of difficulties accessing low-secure services, a number of medium-secure wards were finding themselves holding on to people until they were ready to be discharged direct to community services – only to find that they need new knowledge and new relationships in order to be able to do this well:

What I find happens from a medium secure point of view is, we admit people who are quite poorly, need to be here, and then there’s a bit of a delay getting them to low secure, for whatever reason, whether that’s to do with their bed capacity and their movement, and then they end up here almost too long, that they don’t need low secure any more, and then we’re in a position that we’re having to find these really complicated placements that we’re not in the habit of doing …. So, then we’re having to set up links from scratch and go out there and find places that ordinarily low secure deal more with …. [Historically, someone would go from medium to low secure, before a subsequent discharge]. In the more recent years, it’s been less like that, and we have had some more creative ways of discharging people …. But typically and traditionally, that’s how the forensic pathway has worked, which means we’re not as au fait with what’s out there in the community as our low secure colleagues probably are, and we’re having to become more familiar with that, but it does take longer, and therefore people are here longer.

(Site B hospital focus group)

Although providers’ perspectives are explored further in the next chapter, it is worth noting here that they shared the view that there was an issue with a lack of awareness of what was possible or available in the community:

One of the first meetings I had was in [place X] with various representatives from then the CCG, now the ICBs or whatever, but they were saying ‘we don’t really understand what supported living is. We don’t understand what community-based placements are’.

(Provider 3)

I think there’s a lack of education within the hospital staff about the regulated activities as well, you know, when somebody says ‘we want residential for this person’, what actually does that mean? You know, if you’re a creative community provider you can provide the same service under whatever regulated activity is required and yet they still want residential! There was a consultant psychiatrist in a regional secure unit up in [place Y] who insisted that the conditions of the discharge should be a residential service and we were trying to say ‘but actually a residential service has got an element of communal living’, and what he was actually talking about was restricted environments and he thought that could only be achieved in a residential service …. But yeah, it’s about what people imagine – a lot of people can’t conceptualise what a particular service will look like. We’ve got supported living services that are a bit more like residential. We’ve got residential services that are individual flats under the same roof and if a person’s needs change and the commissioners decide that supported living is a much better option, they can actually change regulated process without changing their house.

(Provider 2)

Lack of involvement of key professionals

Underpinning issues with timing, disputes about funding and the complexity of the process were also problems with getting different teams and individuals to, firstly, communicate effectively with each other in order to agree a discharge process and move it along; and secondly to individually complete the necessary actions needed to progress the person’s discharge. Many participants expressed particular frustration at the absence or lack of engagement of key professionals at CTRs and other meetings, lack of follow-up or a lack of information-sharing:

The other thing that jumps out is about getting the right people around the table. We’ll have meetings after meetings after meetings about the more complex discharges and the more creative discharges, but an individual isn’t present to say yes or no or take responsibility for something, then that whole meeting becomes pointless, and we’re waiting again. So, sometimes the more complex the discharge, the more people need to be involved, it becomes like a personnel difficulty.

(Site B hospital focus group)

Care managers not attending reviews, not keeping people up to date even if it’s to say they’ve been unsuccessful [with finding a placement], it’s that constant chasing for information.

(B1 Commissioner)

The frustrations from the MDT are such that it’s taken such a long time for the CCG to actually listen to what they’ve been saying and we’ve had numerous meetings … so I would say from the end of 2020 we were looking for a positive discharge by December 2021. I think it’s fair to say that the CCGs – I think time might have run away with them – so in my head at the MDT we were working to that discharge timeline and it did take quite a while to get the CCG to get providers to go out to be assessing her.

(A7 Commissioner)

Often, people identified the presence of a ‘responsible clinician’ from the community as being fundamental for decision-making and clarity around how best to support that person post-discharge:

I think one of the stumbling blocks we certainly feel in forensics is a lack of a medical representation. So, the bottom line with a detained service user is that that responsible clinician is, in fact, that responsible clinician, and decisions can be discussed and can be agreed, but they can’t be made without their input and their agreement. So, if they’re not there, that can be problematic. Not necessarily throughout the process of discharge, but certainly at any point where decisions are being made, we need medical representation, particularly from the RC or a delegate. And I guess, depending on what we’re talking about in terms of the discharge place, the environment, you need the representation from that area that is able to similarly make decisions, give all the correct information …. Without those two sides there, it feels like a big chat that we can have, and we can all have these nice ideas, but there’s no sense of achievement from it.

(Site B hospital focus group)

Many also noted issues in terms of the absence or turnover of social workers, and some people in hospital said that they had never even met the person’s social worker. This was different in one site, who employed their own in-house social workers. However, in around half the remaining meetings observed, there was no social worker present.

Poor communication by and between professionals

As well as the absence or lack of engagement of key professionals, many participants also noted persistent communication issues, in terms of either infrequency or inconsistency of contact, or the manner in which people communicated. In the example below, a commissioner described a situation in which they felt communication had been poor and decision-making almost unilateral:

The one patient I’m thinking about, he’s had an unsuccessful discharge into the community, so we had him out on Section 17 leave [leave authorised by the clinician in charge of the person’s care under the Mental Health Act]. There was an incident and he was brought back in and frankly he was forgotten about. Comms from the MDT outward were really restricted. We were going in, trying to work out what’s happening – we need to get this back on the pathway. The [community] team, they also actually for a period seemed just to – wasn’t important to pick him up again – and then I find out – they were there asking for discharge planning meetings to be scheduled – and I get an email yesterday to say that the RC has referred into a locked rehab service. No consultation with myself as the case manager, no consultation with the CCG … it just beggars belief. So I email her and say ‘I’ve just heard you’ve done this’ and she emails back and said ‘yeah, I’ve done it’. I was like ‘we’re looking for a community pathway, not another inpatient stay, he’s already been in hospital'.

(A5 Commissioner)

Other people described repeatedly having to give the same information during the referral process, which added time to an already potentially lengthy assessment:

All these services are so individual, and … they all seem to have their own different processes and refer to things in different ways. So, they may be requesting the same information, but asking it in a way that’s very different from the last service that we’ve dealt with. So, it feels like sometimes we’re duplicating work. They’re asking for an assessment or an understanding of someone’s needs, but you’re almost having to seek out, well, what is it that you actually want from us?

(Site B hospital focus group)

Poor communication with the person and family

People in hospital and their families were also aware of the risk of poor communication:

Well, there’s lack of communication, so they don’t tell you anything anyway. But when they do tell you, it’s the last minute. Definitely a lack of communication anyway …. They’re not giving us or saying stuff to us to help us to move on properly. So, they are telling us, but on the last minute, and it’s no point them telling us on the last minute. It needs to be well prepared and put it in our diaries as much as they can put it in theirs, and they’re not doing that.

(C2 PLD)

Below, a peer support worker reflected on his experiences of poor communication during his time in hospital, and how this created a lack of trust:

My medication got changed when I was in secure service. Two weeks after, I sat down with my psychiatrist to have like a ward round, and he didn’t even remember that he’d changed my medication and he didn’t even have the decency to open up his laptop, get my own file up to see the changes what have happened in the past couple of weeks. This is the person who gets to say if I stay in hospital or if I get discharged.

(Site A hospital focus group)

In the situation below, two family members discussed their brother’s situation and the absence of the local commissioner from important meetings. They went on to describe how they felt excluded from future meetings after challenging the team on their poor communication:

Family member 1: I’ve never seen such poor multi-agency working, not connecting, not information sharing, it’s dire, absolutely dire, and they should be held over hot coals for it.

Family member 2: Yeah, because basically the hospital were saying, ‘We’re ready to move him on, now we need you to do your bit.’ He [commissioner] never turned up for meetings and then ….

Family member 1: He did one.

Family member 2: He did do one didn’t he, yeah. I said to him, ‘I don’t think we’ll ever see you again.’ And, ‘Oh no, I will be at the next meeting.’ And I’ve never seen him since. It was at that meeting that I said, ‘I can’t believe, I’m a professional myself, I work in similar services, albeit it’s children’s, and I can’t believe that you don’t hold yourselves accountable for your information sharing,’ you know they don’t chain the email and add the people into the groups, I was just appalled, absolutely appalled. I said, ‘You’re all accountable, you’re paid to do a job, you’re all accountable for …’ and we’ve never been invited, that was the last big meeting I was ever invited to.

(B4 Family)

This was not the only situation in which family members felt they were excluded from communication after they challenged professionals. Below is an example that one family member cited from a previous setting to illustrate the power that professionals have:

Apparently she’d broken something in her room, well she’d even wrecked her room. They had her in a room for three weeks with just a mattress on the floor. Now to me, that’s not right. I was in the meeting and I said to them, I said ‘I challenge any one of you to stay in a room for three weeks on your own and not come out with some kind of mental health problem’. And they were like ‘Yes but she wrecked the room’. I said ‘Oh so it’s all about money this then is it?’ and after that they didn’t want me in their meetings.

(A7 Family)

Focusing on the person

Successful discharges seemed always to be underpinned by a genuine understanding of the person’s individual needs and by person-centred support plans:

What would help is … to see the person that we’re talking about as an individual with a right to live their life.

(B1 Commissioner)

[What would help is] having substantive case managers who sit in post who get to know their service user very well and his or her needs.

(A8 Commissioner)

This could be particularly powerful when someone senior and/or in a central co-ordinating roles had these values and could practise in this way:

So the RC that I’m thinking of who is doing it well …, she sees the person at the centre of every meeting, every meeting is person-centred, you know. There is a monthly discharge planning meeting for this lady and has been for the last, I don’t know, seventeen months since she came into post, maybe longer, eighteen months. She brings people to account in the meeting, she expects people to come with progress and an update, so she advocates for her, she sends out really clear minutes with an action plan. So the 12 point discharge plan is updated and circulated. The patient knows throughout where things have been in terms of the planning. She’s been involved in the discussions when it’s been difficult and explained, and she always explains to the patient and checks out with her does she understand what’s been said – and I think that speaks volumes about inclusion.

(B1 Commissioner)

This was also seen as more likely to occur when there is consistency of staff:

What they were doing behind the scenes was they were looking at an … extra package of care where she would be on the main ward, where she could be safe, where the other women could be safe, and she would have an improved quality of life …. So we initially had her on a 2 to 1 package, so she had two nurses with her throughout and then she has slowly transitioned – the whole ward moved from [Place X] to [Place Y] last year some time – but what’s been consistent is her care team’s been consistent, the RC cover’s been consistent and they understand her, they understand her really well.

(A7 Commissioner)

Co-ordination and communication

Basic co-ordination and communication were seen as fundamental – albeit this could sometimes be aided by specific additional roles to handle areas of particular complexity or tension:

Well … we had a re-settlement lead, and it really helps me to be able to hand over to a re-settlement lead – case manager – because they have a lesser caseload and they can keep going where I have a caseload that’s a real mix, and trying to do the discharge and the delays and everything is really hard. Yes, having a re-settlement lead has done wonders.

(A4 Commissioner)

Now the way that they looked at it is they thought they’d bring on-board a business development officer to look at accommodation and provision and the needs and to match the needs, so the CCG employed, she’s called [….], and I wish we could photocopy her and put her everywhere else because she’s fantastic and she works really closely with the local authority around need.

(Site B Focus Group)

We do have quite a robust group of very experienced case managers actually, all of whom have been in management/leadership roles and clinical roles, and the meeting I’m about to go to, we do look at – we do think about themes – we are developing new services, including community services, which are more local and which will, if people use them, gradually create local – more demand in the community when people are discharged. So that’s in parallel.

(A8 Commissioner)

In the last team I worked in, we created our own little ‘out of area cell’. Our team took on that and we created our own out of area cell, we took co-ordinators …, psychiatrists, psychologists and our team manager were all involved in that to try and find ways to move people back from locked rehab into the community. We had close working relationships with the housing, we were a regular part of the complex housing meetings, I offered supervision to a number of hostels and stuff. So there’s lots of good stuff that we did, a lot of stuff I did outside my job because I enjoyed all that stuff.

(B6 Commissioner)

Appropriate capacity

Finally, commissioners in particular talked about the importance of having manageable caseloads and being able to access support with particularly difficult cases – recognising that this could often be a key bottleneck:

If you try and do the maths and you look at one case worker …: 26 patients – CTRs, at least one a year; 26 CPAs at least twice a year; … eight weekly reviews, bi-monthly reviews, six times 26; and that’s before one gets into any other – anything else …. We have had an away day recently, …where we looked at what is ideal case management capacity to enable the follow up – the follow through of actions to be undertaken. We reckon it’s about 12. So … we’re putting in applications for re-banding of the admin so they can become business support managers and they’re going to work with us – we’re going to ringfence them – we’re going to look at case management capacity.

(A8 Commissioner)

I mean, we have a monthly [regional] surgery where the patients get – where the people get discussed – and we have a strategic case manager who works straight for NHS England … – and she will help me. I’d be happy to do it myself to negotiate with the medical director, but I’m happy that she’s around to do that because I probably run out of time. But having somebody where we can say, ‘what are the options open, where there are challenges in the pathway, so what might we be able to do …’.

(A8 Commissioner)

Social workers

Social workers described their role as interacting with the person and their family, trying to co-ordinate discharge processes and documentation, and liaising with partner agencies:

I’d say my role is, at the moment, is very much gathering the information from (Place X) and reporting it back to the high court so that they understand and see how (A1) is in relation to return to [home country]. I would see my role also as advocating for him… and also feeding back information from the high court to [A1] and [hospital] staff as well about questions that they may ask or situations that they may have as well – so it’s a bit of a go-between at the moment.

(A1 Social Worker)

I guess whilst there’s not an appropriate placement identified, and whilst that work’s ongoing, there is an increased reliance on us to support assessments …. With every assessment comes a new document. Each service wants a different piece of paperwork completing …. We’ve probably completed about ten different pieces of paper, and they’re not short reports, across the last few months, and supported [A9] with actual face to face assessments. It’s part of our job, but I guess, whilst … we’re going through a number of different services, it increases workload in that regard.

(A9 Social Worker)

And I think that’s the same across all learning disability cases is if they’ve got a good case manager or a good social worker, things seem to move. If they haven’t, things don’t.

(A8 Commissioner)

Good social work is about promoting well-being generally. Good social work in my role here as a forensic social worker, equally important, it’s about public protection. All the patients in this hospital here, bar a few, have probably committed a crime that’s punishable by a minimum of a year in prison. There are some mitigating circumstances. They’re in hospital, perhaps, because of mental ill health. So, I think fundamentally, that’s the cornerstone of my approach. It’s about being inclusive. It’s about working with people. It’s about helping [B4] for example, with his hopes and his aspirations. It’s about supporting service users to take responsibility and be accountable.

(B4 Social Worker)

Where social workers were able to get involved early on and remain part of the person’s journey, it could provide a number of benefits, in terms of really understanding the person, being there to fight for them and really caring about what happens next. However, such continuity was very much the exception:

So, when he turned 18 it was pretty much [his] 18th birthday, special care is over, you’re an adult, you’re out, that’s it. There was no transition period or anything like that. It was very much we have to rush through this because when I got to know him, we had to find the housing, the support services, the funding, everything like that so very much no transition, nothing like that. It was just out from one place to another …. And of course, the problem you have with private organisations is when you send in a referral, they say we can’t do that. We can’t provide what is being recommended. We see a psychiatric assessment that says secure hospital, we can’t give that. We’re not going to risk or anything so he ended up staying in prison which isn’t very good for him at all just because no-one else will provide something. You’ll probably hear a bit of the bitterness within my voice.

(A1 Social Worker)

In such instances a relationship evolves and a level of trust develops. In the case of person A1, for example, when asked whom they would want supporting their discharge, they were quick to say, ‘Social worker, the one back in [Place 1]’. However, not all interviewees were complementary about the contribution of social workers. Alongside concerns regarding continuity and sometimes rapid turnover in social workers, participants raised issues about some social workers’ overall knowledge and skills when working in such complex service settings.

And so people like [A5] and that will have somebody that knows the systems to push the buttons to get them moving to discharge, and usually a delayed discharge [happens when the] social worker can’t find anywhere. It’s the provision, but also … some of the social workers don’t know …. They’re not up to speed, to say the least.

(A5 Commissioner)

So we submitted all the quotes, we got things sorted and we were like, ‘What’s happening, are the funds going to be released? There’s been talk about [B4] maybe going next week for an overnight stay, there’s nothing in the house.’ Well it were carpeted because that’s what they do with these houses, they carpet them and they do put [in a] fridge-freezer, all white goods were in, but no bed, no curtaining, no blinds. His social worker … couldn’t give me an answer.

(B4 Family)

Advocacy

Some people saw advocacy as helpful in identifying/addressing some of the barriers to leaving hospital. Among other things, advocacy roles were perceived as helping to make sure that family members are more involved in the person’s care and helping to repair, or manage, relationships between the person and their family where these are strained (see Box 14).

However, not everyone agreed. Some people stated outright that they did not have an advocate while others said they did not even know whether this was an option. In some cases, in the absence of a formal advocate, close family members or a member of staff played a more informal advocacy role. Most people had a solicitor, some of whom were also felt to perform some elements of an advocacy role. However, whilst they could have influence, solicitors were sometimes seen as less effective as an advocate in representing the best interests and views of the person. One commissioner also talked about the input of ‘senior intervenors’, recently introduced and being piloted:

The people that we’re supporting at the moment are fortunate enough to have family members that they’re happy to advocate on their behalf. But when someone does have that family member who’s actively involved, it automatically sometimes disqualifies them from actually getting an advocate …. It’s not always a given that someone’s entitled to an advocate.

(Provider focus group 2)

I think one of the concerning things … was sometimes people didn’t have any family involved. But then they also didn’t have an advocate. They had nobody.

(A9 Commissioner)

I’ll be honest here, the issue I have especially when I get like a letter from someone like [Name X] or whatever else, all I ever think about is it’s a money trail. So it’s a very candid response. Quite often what I tend to see is meddling from lawyers and solicitors that actually doesn’t do advocacy for the person.

(Provider focus group 3)

And so, if I ever face any challenges, she [senior intervenor] can advocate for me. She doesn’t just advocate for me. She advocates for [A9]…. Without a senior intervenor I would say we have found challenges with people coming to the table. We have found challenges with understanding how the system works.

(A9 Commissioner)

One person has got the nurse in charge … who is an absolute advocate for this person, you know you don’t often meet nurses who are that determined. On the same site there’s another person where the team has virtually given up, I think, and it just to me shows the importance of having that strong on-the-ground lead.

(Advocate 3)

However, much of the potential impact of advocacy depended on getting access to an advocate in the first place, and the advocate having the right skills – neither of which was necessarily a given:

We have to fight to get people advocates and then it’s pot luck as to whether you get an advocate who can do the job or not, put bluntly.

(Provider focus group 1)

When it comes to being in the community it’s really hard to get an advocate.

(Provider focus group 2)

I think we’ve had very mixed experiences. So I think where people have needed help from advocates, it’s hit and miss depending on the skills of the advocate really.

(Provider focus group 1)

Care providers

The role of care providers who support people after hospital featured prominently in many of our interviews and focus groups. As explored in previous chapters, it was rare for the right arrangements to be in place for people in a timely way, and demand rarely matched supply:

At the moment, the providers are saturated with referrals, so they’re picking and choosing and it’s getting somebody to come and do the assessment, then it’ll be about – well it’s not funding – that doesn’t delay things any more – it’ll be about can they assess and accommodate straightaway and then we’re looking at a transition period so that he can start building up some leave, they’re getting to know the service, yeah, and will he accept, will he buy in if it’s not in [Place X] – that’s the other new equation.

(B1 Commissioner)

If you’re going to offer a supportive living package to somebody with autism and a dual diagnosis, I don’t know, of antisocial personality disorder, then you need to make sure your staff understand what those diagnoses are … understand what a PBS [positive behaviour support] plan is, understand, you know, training around [particular risk assessment tool].

(A1 Commissioner)

From the providers’ perspective, things work best when the provider is involved at an early stage, contributing to the person’s assessment and discharge plan, agreeing on the person’s needs and liaising with community services:

I think that’s key, making sure it’s the right environment including the layout, but also the staff that are recruited. Getting the community links in place prior to the person being discharged so you’ve got that additional support from the off …. Luckily our local MDTs actually do pick the person up before they’re discharged and it makes it a lot easier. Transition, obviously depending on that person’s need, that’s really important for the person to feel comfortable in their new home with a new staff team, and for the staff team to get to know them …. And actually completing assessments into why the person’s behaving that way because it might be completely different from when they’re in hospital to when they move into that new home, to make sure that the strategies for supporting them are right – and if that all goes well, the risk of them being recalled to hospital just reduces significantly.

(Provider focus group 2)

Siloed or inflexible pathways

As with hospital staff and commissioners in the previous chapter, social care participants felt that some people faced such extended stays because of complex circumstances and/or diagnoses which makes it difficult for them to fit into narrowly defined pathways:

I guess she doesn’t fit into a natural pathway in that her risk has decreased to point where she doesn’t require our service, but some of the risk is untested, based on the intensity of the care she receives here, because of being in [long term segregation]. So, there’s quite a jump between that and locked rehab or community packages …. We’re working with her and community and commissioning teams at the moment to look at bespoke packages or specialist locked rehab and to do a thorough assessment to see what would next best suit [A9].

(A9 Social Worker)

I guess people need to make a decision as to whether [B4] is going to remain in hospital forever and a day because he’s going to present a high risk and an ongoing risk, and a statical risk towards harming children, or we look at other alternatives, and somewhere, somewhere along the line.

(B4 Social Worker)

[The] main blocks in regard to discharge have been that he was, his risk is still there. It’s more of a predictable risk now. The consultant wanting him discharged under DoLS, however I’ve assessed him as having capacity to decide where to live so DoLS wouldn’t be appropriate. So we’re at a bit of a stalemate at the moment …, which is really frustrating for him and all the professionals involved. Where it’s going to go to next I’m not a hundred percent sure. I’m waiting for the hospital to confirm whether they’re going to disagree with my capacity assessment in which case it will go through the Court of Protection to make a … decision on his capacity. If they are not wanting to disagree with my capacity assessment then we need to look at alternative legal frameworks for him to be discharged safely into the community.

(B2 Social Worker)

Appropriate accommodation and/or support

As with other chapters, a common barrier was a perceived lack of a suitable placements for the person awaiting discharge (see Box 16), especially when the person’s needs were seen as particularly complex.

Linked to this is the issue of ‘geography’, in terms of where the person would like to move to (bearing in mind the key factors that could support their transition) versus the location in which a suitable placement is available:

You could find a really good placement that you’d think could meet the needs of a number of the women that you work with, and they’re in the wrong parts of the country …. So, I’m working to support somebody else to leave medium secure, and she is funded by one area, because that’s where she was living years back, when she first became involved in services. Her family re-located to another area, quite significantly further away from that area. She’s placed with us, which is a different area, and we’re looking for her next locked rehab placement. So, her commissioning team said that they would look where her Mum’s moved to, because that’s what’s most important to her, and they did that, but no services exist. So, they’ve found a service for her that they believe meets her need, and it sounds like it really does, but that’s further away from Mum than even we are. So, it’s almost like she has to choose. Stay in medium secure to be closer to Mum, or move to locked rehab, but be even further away from your Mum …. And I’m not saying that to be critical of her commissioners, because they’ve looked, they’ve searched for services. It’s not that they weren’t willing to do it, it’s just a lack of service provision for them to commission …. So, we’re not getting that right for her, but it just doesn’t exist. You have a team willing to look in that area, willing to fund it, willing to be creative about how they supported her, it just doesn’t exist.

(A9 Social Worker)

In the example below, the opposite was true – with a possible placement seen as being too close to a family that were perceived as being exploitative:

The person who held the case before me had identified a place …, but the person didn’t want to move there. I think there was some fears around, I suppose, bits of exploitation from family, so he opted not to move to a placement. So, we’re now looking to try and source alternative accommodation for him to move to.

(B1 Social Worker)

It could also be difficult to identify the right environment for someone who might not be able to live alongside other people using that service:

It’s actually the physical environment that commissioners find difficult to find. Obviously getting the skills with the right support is also as important, but actually getting the right physical environment for somebody, especially when they will struggle to live with others and may have behaviours that cause damage, can be what leads to people staying in hospital longer than they need to be.

(Provider focus group 2)

Several participants also found it difficult to place someone because of a negative (historical) reputation or series of labels that they might be carrying:

Something needs to happen in terms of providers because that can really badly delay things as well – so once people have, you know, got a certain history attached to them, then it becomes harder and harder to find providers. I think that is a major issue.

(Advocate 3)

I think what happens is people have a crisis and then instead of people recognising that’s a crisis and that’s a temporary thing, that becomes the person’s reality really, and it’s that reputation that just follows the person wherever they are.

(Provider focus group 1)

Sometimes, providers felt that they received referrals which were more to do with other professionals trying to show that they had tried their best, rather than because this was the right placement for the person. At the same time, there was a perception that hospitals sometimes present stringent conditions, making it extremely difficult for a provider to accept the referral:

I get a lot of traffic from people who want me to say no to things because they want to justify sending them to another hospital. So, you know, I had a, let’s call it a referral for argument’s sake, the other week for a guy who needed 5:1 support. Well apart from ethically I won’t do that because for a guy in his own home and living in his own community, you shouldn’t need 5 people sitting on you to remain safe in your own home. Ethically we just don’t do it, we do de-escalation, we don’t do restraints, you know, so that’s an obvious line. I’ve never known a situation in the community with 5 staff which has been successful because there’s too many people and … there’s so many things that are wrong with that. So I’m obviously going to say no, then the commissioner says ‘well we asked the provider, they said no so therefore we’re going to move him to wherever’.

(Provider focus group 2)

I think part of the problem is that the staff are really good at keeping people in hospital and keeping people safe, if you like, but not having a life – and I think that when they’re asked what the person needs when they move into the community, all their reports and their recommendations are about recreating what’s provided in the hospital. So … the assessment process right from the beginning point of discharge is really flawed because actually you get all this stuff about this person needs a house that’s sound-proofed, they need to not have any neighbours, you know, all this stuff that’s about reputation, which people genuinely believe.

(Provider focus group 1)

On other occasions, delays took place because key actions were left till too late on in the process (particularly when thinking about housing-based approaches):

Sometimes it can be when it’s done at the last possible point, so then you’re kind of contacted as a provider to say ‘this person is ready for discharge’ but then actually that process only just begins then and we all know that if you’ve got to purchase a house that can be four, five months down the line and obviously you then can’t recruit until after that so you almost need to be at the beginning stage of trying to look at what is needed. And I think some services are getting better at that, but I think it’s all these delays add [up] – and we know that people then struggle so then that means they go backwards, which then some consultants say they’re no longer ready for discharge because they’ve now begun presenting with more behaviour than what they were six months ago when they were ready.

(Provider focus group 2)

Lack of staff

Part of not having the right services available when needed was the difficulty in recruiting and retaining the right number of staff with the right skills. This was partly due to a lack of social workers with specialist skills and/or to rapid turnover of social work staff:

Ten years ago … we had 12 specialist learning disability social workers working in a team for the borough; there’s 2 now. So obviously most cases are only open to review if they’re open at all.

(Provider focus group 1)

So then you’ve got to go through all that referral process and there’s a shortage of social workers still, so you’re still in that revolving cycle of not getting to the bottom of it.

(Provider focus group 2)

There’s a slow but very significant eradication of social workers. So most of the social workers I’ve either managed in the past or worked with have gone, they’ve left and quite a lot of them have gone to other local authorities. So they felt a kind of purge in terms of what’s happened really over the kind of austerity years and stuff. But what I’ve encountered now is there’s been shifts in the way that [place X] for instance puts out those care managers, that rather than have them in specialised teams, they put them into localities. So you might have people working, say, with significant complex needs for discharge from an ATU but their background is older people. So straight away they really don’t have a handle on what they’re managing in terms of those complexities and they may well have never even heard of supported living …. It’s detrimental to them and to their ability to meet the needs of the people that they’re actually trying to advocate for when their own experience and knowledge is so lacking.

(Provider focus group 3)

Many social care providers were also struggling with recruitment:

An example of receiving a referral from somebody who was classed as ready for discharge … and it took us 9 months to recruit a staff team, a suitable staff team, which obviously then led to issues with that person in hospital …, increases in behaviours, increases in incidents and self-harm and things like that. But the difficulty that I think a lot of social care providers are facing at the minute in terms of recruitment is just exaggerated when you are looking for specific staff to work in complex or forensic environments.

(Provider focus group 2)

One of the massive, massive barriers at the moment is the general recruitment situation …. You see there’s an advert for the NHS, ‘go and join the NHS’, they tend to pick the cream of the crop if you like from the candidates but you’ve got Aldi up the road paying £15 an hour, you’ve got Lidl paying 15 quid an hour, and then you’ve got the commissioners saying ‘but we only want it to cost this’…. Support work is no longer seen as sexy or anything exciting … and actually it’s a phenomenal role to come into and actually the people that are on our frontlines do – I don’t want this to sound cheesy in any way – but do an incredible job and they’re just not recognised for it. That’s what we really need, you know, pay them what they’re worth because they keep us all safe, they do an extremely difficult job and we don’t talk about how soul-destroying and lonely 1:1 support in the community setting can be sometimes, and we expect people to keep going … and they do and we try and look at creative ways to keep people engaged – but it’s not seen as that desirable job that I so wish it was.

(Provider focus group 3)

You know, I wouldn’t want to do it for £11 an hour …. You know, some of the level of support that people need, week in, week out, there’s so many challenges across the board with recruitment. Social care needs a massive injection of an incredible amount of money, just to be okay, and we find ourselves in a position where every provider you speak to, they don’t have enough staff …. They can’t meet the need, or you might need somebody of a specific sex to work with a person, and they can’t recruit males or females …. There isn’t enough people available to any service, and because of that, staff retention’s difficult as well. That’s a bigger picture.

(B1 Social Worker)

Funding

Providers were unanimous that funding issues were a major barrier to timely discharge. This ranged from the macro (including inadequate investment in the sector) to the micro (including arguments over who pays for what) (see Box 17).

In many of these examples, providers were absorbing significant costs and financial risks, particularly if a subsequent placement broke down. In the example below, a house had been purchased and a dedicated staff team recruited, with a potential lack of clarity as to who might manage these financial risks and around hidden costs:

I’ve just been working on a project where I was actually engaged with a person in the hospital for nearly three years and that was going through the legal frameworks that were required. It was a particularly complex and high-profile public case and I was working for three years before the police agreed on a premises in the first place. So the police then agreed on a premises, we had probation, the person on trial leave then started six months ago and that’s three years of no pay …. So it’s only me at this point, then we’ve got to do the house searches, we get agents involved. The company decided on purchasing a house so we did purchase the house – that took a little while, it had to be agreed by the police. So we purchased the house and … once the transition started, technically the person became on our books and started to experience some community living. So that’s how it started and then we started receiving payments only for the hours that were being provided at that point in time, so none of the research, none of the building modifications, none of any of that was sorted out. As it happened, the placement’s broken down.

(Provider focus group 3)

Risk averseness

Behind some of the different perspectives of health and social care staff was a series of different approaches to risk – which was sometimes seen as being ‘risk averse’ by a number of social care participants, often arising out of a perceived lack of knowledge about the nature of community services:

I think there’s such a different perception about risk … I think people from the best of intentions in the hospital treatment world, they’ve no understanding of community.

(Provider focus group 1)

We also can come up against some really restrictive MDTs that are like ‘this person isn’t ready for discharge’. But when you ask why, ‘well because they need a lock on their kitchen, they run this risk of …’. Actually I think it’s their understanding of … what can be done and what can be developed in the community collaboratively to discharge somebody into the community. We recently supported somebody after 22 years because every provider kept saying ‘it’s too risky, it’s too risky’. They moved into the community really successfully but actually if you’re not giving people a chance then you are just going to go round that same cycle day in, day out, month after month, and those years mount for them.

(Provider focus group 2)