Innovating and adapting

Models of care required constant reinvention and the navigation of unpredictability as services responded to changing policy environments, local contexts and the changing needs of patients and clients.

A case of testing something… if it doesn’t work you trial, you trial, you test it… it doesn’t work, you go back to the drawing board, and you look at different ways.

Appointment systems were one example, where services tested out: flexibility for walk-ins ‘because some people do just need seeing there and then’; primary care triage that actively allowed for a social or a clinical response and flexing on length of appointments.

There was an increasing inclusion of social workers and care coordinators in one nurse-led team to ‘get a handle’ on the social support needs of increasing numbers of people-seeking asylum. There was a common reference to a ‘duty of care’ to see people as soon as they were made aware of new patients, requiring constant navigation of the ebbs and flows of patient numbers, noticing and responding to emerging needs and evolving practice and ways of working: “This is our problem… how can we think about it, how can we be more effective?”

Where services were providing healthcare to residents in contingency accommodation there was a continuous process of identifying new locations, rethinking practices, negotiating access and local collaborations, and accepting a heavy resource commitment to operations and relationships.

What became clear, very quickly, was that you couldn’t set it up in one way and stick to it because the need kept moving and as soon as a hotel shut something else opened and every patch had a different infrastructure… what we learned was that we needed to be really quick… we needed to set up where we were needed and in the way that we were needed.

Navigating working relationships with accommodation providers was feasible but also combined with a ‘general hostility’: accommodation staff were sometimes ‘obstructive’, care providers were ‘up against it to get in to help people’ and at times were ‘turned away by security’. Communication challenges, exacerbated by high staff turnover within accommodation contractors, were seen as a key factor.

Care within these settings also demanded flexibility as to where workers were prepared to do their work, often adapting from 1 day to the next. Care is often delivered ‘in a little corner’ of a communal ‘lounge’ (more corridors than clinics), in rooms (like cupboards) with no windows, no air, and no space, or in a staff room, with security sleeping as bloods were taken. Though there was always effort to make someone feel comfortable, there was still concern about the inability to ‘control the environment’ and that spaces were not always appropriate or conducive to the disclosure of health concerns.

Language Line on loud speaker… being very close to the dining room and then all the stuff going on there getting prepped for dinner and then somebody coming by with a hoover and it was just very, very noisy and the person I was with just got very overwhelmed with it all and very sort of frustrated, he couldn’t sort of tell me, couldn’t hear the interpreter, I couldn’t hear what the interpreter was saying.

Worker’s roles had a mobility to them. Care was often being delivered outside of the typical boundaries of usual practice (“there are lots of things that we will be more flexible about, than we might in other services”). It saw psychologists and nurses describe, “sometimes we feel like we are lawyers, sometimes we’re social workers…”, and there was talk of being in a position to act as entrepreneurs, to see challenges and create opportunities to develop a response. There was recognition that these attitudes were made possible first by institutional structures. Though one service described a large health agency as ‘the opposite of blinkered’, services generally talked about the ‘possibility’ and ‘focus’ that came with sitting outside the ‘restrictive agendas’ of certain agencies.

We’re not constrained by red tape, so something like this, which is a new project, let’s recruit staff for it, let’s have a look at skill mix. Let’s get the money to support them. Let’s try it. If it doesn’t work, we’ll try it a different way, that’s the kind of thinking. And there is that flexibility to say, look, actually, there is an unmet need here, what can we do here… it is really, really refreshing.

The active involvement of senior leadership in delivery of most services was seen as enabling this. As one provider put it,

[They] are also invested… things happen and things happen a lot more easily and a lot more quickly and innovation does turn into… you know… a real tangible service for people. We’re just like… that’s a good idea let’s make it happen…

The specialist nature of each service also appeared to help: “Everybody’s head is in the same place… and it’s easier to get my head around the ideas that people have because it’s my world as well.” Workers were “free… to be looking for what the problems are”, “to notice”, to have ideas and “still discovering together” the best ways of delivering care. This was performed through “a different kind of culture”, a mentality of “creativity”, more a “vocation” than a job: “I don’t think it would suit someone who wanted to go in and work by the book.”

Flexing for patient need

There was flexibility too in the microinteractions with patients and clients, which saw women’s groups shaped by women’s interests; workers in a position to enact fluid practices of referral (“If someone comes to one of our groups and just expresses a support need then we’ll pick that up”); and health drop-ins where anything goes (eg, helping someone to understand a referral letter for the hospital, linking a volunteer with someone trying to find the GP practice, sourcing bikes, providing shoes (most residents with only flipflops on their feet).

Patient engagement was a priority. Word of mouth had proved best for one service engaging hotel residents: “They need to hear that it’s happening…” and here volunteers were recruited “to get them spreading out the word”. An arrangement in another service allowed for young children to be cared for by the healthcare assistant, with a door propped open for everyone’s peace of mind, but with enough privacy for a parent to discuss more sensitive issues.

There was heavy reflection on why someone might not attend an appointment, recognising that trauma may not make it “easy to come” or will make it easy “to forget”. We were told that someone might arrive at their clinic (rather than the hospital) because it makes sense to go to the one that you know and not the one described in the “letter that you don’t understand”. It was often said that people simply cannot get there: “I didn’t have the money”, a “taxi doesn’t come, or it comes late and they miss the appointment”.

To support patient engagement, there was reference to volunteers in hotels knocking on clients’ doors ‘encouraging’ people to attend a planned appointment, text message reminders a day before an appointment, and phone calls prompting or checking that someone was planning to attend or was on their way, clarifying that “it’s okay to be a bit late”, “we’ll fit you in”.

It depends on the patient really. So, some patients, if it gets to 50 minutes late and it’s something really minor, we’ll be like ‘no sorry you need to play by the rules’ if its half an hour… some people will let way for half an hour, some people if they turn up at all we’re just grateful. It depends on how vulnerable they are and so there’s always a bit of flexibility.

There was an emphasis on ‘finding out why’ an appointment was missed: “The first thing we do is, we pick up the phone”. Services talked about reoffering appointments, putting in place support, such as help with navigation, telling the time and peer advocates emphasising the benefits of the offered care: “We will… talk to them and make them understand how useful that is, help them see what they’re missing”. There was occasional reimbursement of travel costs for some appointments but a view that, with a ‘bit of perseverance’ or support, people will subsequently attend.

One psychologist explained, “well for us it’s like, okay, they’re not here, we’re going to go out, we’re going to mobilise”, explaining that stepping outside the clinic was a culture sometimes difficult for new colleagues. Similarly, other services described making home visits for first contact, or recognised that on occasion, for a mother alone with four children, the clinic should go to them.

Trust

Trust was a theme threading through many conversations. There was recognition of ‘huge amounts of fear’ with people ‘worried about disclosing information’ and ‘getting a bit alarmed’ by medical consent forms. This was often attributed to not knowing ‘who to trust’, to experiences of racism and discrimination, and to fear of government institutions. There was sometimes reluctance around and refusal of catch-up vaccinations.

People are worried about being tagged with the vaccines… a colleague, from a different community… pointed out that… they feel like the Home Office might track them, or something… I suppose it’s kind of having that conversation.

Workers acknowledged that there was no “expectation [for people] to be open and cooperative after one meeting”, with one explaining; “in the initial contact they wouldn’t trust me, and I don’t blame them… that’s why my first contact, I don’t ask any sort of gruelling questions, it’s just about getting to know them”. Services focused on explaining information and processes and working really slowly, providing “active reassurance that there are no ties” with the “Home Office”, with “the police”… “being really clear about who we are…” and that nothing is “compulsory”.

Creating trusted spaces included the service “welcome”. Reception spaces were intentionally designed with language provision, peer support and a conscious drive to get it right: “the welcome to the surgery, how to register, how to book an appointment, that is actually one of the key things”. This included seeing receptionists ‘as part of the team’ who might themselves refer people and tell patients about the social and well-being support available. It might just be “having a welcoming smile”… “saying ‘welcome Mr and Mrs, have a seat, do you want some coffee? Want some tea? Welcome to […], smile…”. It might be a first interaction in which a worker acknowledges someone’s situation, shows some familiarity with someone’s home country, a shared connection over a local dish, providing a moment of happy reflection, workers making efforts to learn “a handful of phrases to support relationship-building”.

Maybe, what also helps is that… when I speak Arabic to people it opens up as well. So, it helps, and I’ve never been to Afghanistan, but I also ask the interpreter, ‘teach me some words’ so I can at least greet a person in their mother tongue and that’s… people are smiling and are saying you know ‘do you know more?’ and I’m like ‘no, no, no, […] is difficult’, and then we talk about languages, how hard it is.

Mental health was seen as an important, yet taboo topic; “talking about your problems outside of your circle, it’s just not done… you would be completely rejected by your community”. Here, there was emphasis on the importance of a ‘good’ relationship; with that ‘we have already gone half of the way’, slowing things down, and as one worker put it, ‘there is no limitation for being patient with patients’.

Building on one-to-one emotional support and doing small practical things to build trust was common: “By showing people their rights, for example, you prove that you are worth the while to listen to and then you can start opening up and relating”, one mental health worker, explained. Several staff members talked about concentrating on peoples’ hobbies and interests, “slowly, slowly and then they will come to you and they’ll tell you ‘actually I’m struggling with this and that… can you support me?’” Face-to-face contact was seen as important, ‘to build that rapport’ and avoid patients’ fears of engaging online: as one interpreter explained, “He feels everybody is hearing everything… he does not feel safe to say everything”. The need to avoid barriers such as ‘a demand for someone’s ID, their address’ while completing GP registration, ‘not taking photocopies’ was recognised among staff. A flexibility with appointment times, frequency and location and valuing the investment of someone’s time as important and part of the ‘relationship of trust’ were further mechanisms. Outreach practices were seen here as a facilitator, closing down some of the barriers and equalising relations between individuals, families, state structures and clinical services:

So when we were assisting the teacher in the conversation with the parents on how to express the problems that a child had in school this was much more like trust building, and not, okay, being sent by the teacher to the hospital as it happens normally because the teacher says, ‘I suppose you have a psychiatric problem’, these kind of referrals do not work. So we do the other way, you need to go there.

Building trust and rapport was explained by one worker as “the most important thing in our job… to make that connection to provide the situation that they can trust us”, it was a process, it took time, it could take months, and “some people remained suspicious”.

Intercultural exchange

Navigating different viewpoints and being aware of the complexity of an intercultural exchange was seen as important in creating and sustaining patient engagement. This required ‘recognition of different health beliefs’ and different interpretations, for example, of ‘behaviour’. There was a need to resist ‘ethnocentrism’ and institutional cultures, several workers acknowledged the ‘white majority’ for whom health services were designed and the ‘conditioning’ of their practice training which they felt they had to resist. This saw a preparedness on the part of workers (and managers) to reflect on their own values and motives,

I think it’s… stop pretending that everyone that works in the health service understands the needs of these populations… they don’t. Be humble, listen to the patients, start including peers in the decision-making process from commissioning down.

There was recognition of boundaries between normality and pathology and symptoms and syndromes that might be understood and explained differently among different cultures. There was some acknowledging of somatic expressions of mental health and of seeking to understand someone’s own interpretation of what was going on, “okay… what you went through… what did it do for the body?”

There was reference to adapting classical therapeutic techniques, one provider talking about using only the physical aspects of EMDR therapy because cognition and emotion were seen to be less present in their patients: “Within our refugee conception of themselves, it’s much more the body…. war trauma… an unaccompanied minor… violated… it’s too heavy for words but his body will express it”. Here, the same provider explained that often more physical practices such as yoga and stress relief exercises might be the best approach.

Explicit intercultural dialogue was described as part of the outreach methodology of one provider which sought to bring together different ‘important actors’ (such as schools, integration services and families) and the individual to draw out ‘the unconscious values’ of each party. This was seen to create ‘a space to bring different identities together’ and to help each group to ‘understand’ and become ‘acquainted’ with other values and perspectives. It was also described as facilitating trust and enabling ‘an adaptation process’ that allows for ‘home cultures’ to coexist in the settlement space as people adapt to ‘living in a Western society’.

The importance of family and extended family perspectives in certain cultures was a further consideration. There was ‘a need’, some said, to bring parents into consultations but to do this in a ‘sensitive’ way; “you have to put it to the [family], you have to ask which person can begin or which one can say how they feel, or what is the problem”. It required an overt “welcome” of this input, “acknowledging respect and thanks for their contribution…”. One service explained that they did this even where parents might remain in their home country,

We cross-borders… so that we make that connection in terms of you know, how do the parents see what’s important in educating their son… so we can actually learn from that and then we can have more bi-cultural identity….

In describing how they broach this contact, they explained,

We don’t say, ‘well listen, we are psychologists’ but it’s more like, you know, ‘Your son has arrived [here]. He’s residing here’ so the parents themselves are very grateful, extremely grateful that they know like, okay, this person is actually asking me about my son and about his wellbeing… so just the fact that you are talking as person to person, you easily get into, yeh, a very close relationship…

Interpreters too were acknowledged as contributing to the intercultural exchange. One service talked about efforts to work with people who understood their therapeutic frame. There was the sharing of case files, “so that I can prepare, research and ensure that I [interpreter] have the full terminology of the specialist clinical language that will be necessary”, conversations with the psychologist before and after a session, “because heavy stuff is happening, and we [psychologists] are trained in not taking it in, but interpreters not”.

An interpreter who worked in this way described the approach as a,

Protection that the psychologist gives to the translator… it’s a way to negotiate what happened and what was in the session. It’s a way to protect the translator from the affection that he gets in the session. It’s a very sensitive thing as a translator for these patients, psychologists’ patients, it’s very important to keep a space between you and the patient. The story of it. Try not to get involved in it…

There was the attempt to ‘fix’ an interpreter to a particular client in order to build a ‘stronger’ therapeutic environment creating a context in which the interpreter could be seen as a mediator of therapy, bringing a skill and cultural sensitivity to the therapeutic encounter; “each time we sit together… and this person, this patient he will feel more and more comfortable to talk and say everything inside him. Because he trusts the translator as he trusts the psychologist”.

Interpreters talked about the responsibility they felt to maintain trust and bring cultural understanding to an encounter. One interpreter used the example of gynaecology and the use of the word, ‘vagina’ where a female patient and her husband may both be present, “so this woman comes from another land that maybe they don’t accept this word. And especially [with] the husband beside her…”. The interpreter explained that if they were to translate directly what had been asked, it would be seen as “a big shame… it will be the last word that I translate and they will leave and never come back. So I have to say it in another way… that is more respectable to this person, more acceptable”. Shifting terminology, they made clear, means conveying this clearly to the health professional, “I directly re translate… and tell the psychologists what I have translated for her. What words I have used… everything must be clear.”

Individuals and their cultural sphere

Facilitating the connection of people with shared cultures, faith, experiences and language were felt to enable ‘better’ care or support an environment in which there was a greater balance of empathy and understanding. This was seen through bringing clients or patients together in group-based practices, including therapy, health education and social activities, “it really helped them because they had the same feeling, they had the same pain for their families and when they were talking with each other… when they shared these feelings… it helped them to feel that they are not alone”.

It was also seen through the engagement of peer or lived experience advocates, usually volunteers, supporting clinical workers or group activities, providing interpretation, and supporting service and local navigation. This was seen to create a more ‘welcoming’ environment, in which individuals could feel ‘safe’ and ‘understood’. When someone “with a shared experience says, ‘I know how you feel…’ it’s because genuinely they do… I think it does make a massive difference… and can also give hope”.

The advantage of being hired on the lived experience is you empathise with the people and even on the difficult patients who are finding it difficult to speak out, or to mention, or to open up and say this is what I need, you can actually read them and say, look I am here because of one, two, three and to be honest I am still on the same journey that you are.

There were lessons learnt from COVID-19 vaccine outreach work that had been delivered alongside ‘members of different communities that knew their communities’. Social prescribing supported by peer volunteers,

So we’re working really closely with the social prescribing team who are looking at getting volunteers to help at hotel sessions whether that be making appointments or helping with immunisation sessions… so it’s looking at how we can utilise their skills as well and they can become advocates for explaining things but also that’s that trusted member of the community that can… you know… be a positive link.

Bicultural workers in one service were described as people with understanding of community development or social services, who had strong links within the community (‘they’re a community leader’) and who were able to negotiate and bridge between ‘mainstream’ and their particular communities. They were also described as being well placed to “identify gaps that may be able to be met in ways that [services] haven’t looked at”.

There was some reference to practice managers, receptionists, nurses and therapists from shared or similar communities, being able to better help navigate and bridge understanding, and though no service described the intentional recruitment of staff with minoritised characteristics, this was reflected across staff more broadly in many of the services. Gender, however, was acknowledged as a factor in certain decisions: a male coordinator was employed to help navigate some of the more complex contexts, such as family planning and faith perspectives; the benefit of flexibility to specify the desired gender of an interpreter, especially for women’s health was described; and one worker talked about being able to call on her (male) colleague in certain situations,

So many times I’ll ring him when I’m in the hotel… I’m like, ‘do you have a moment, I’ve got this patient here’. He’s Arabic. Even if he’s not Arabic, he’s male, can I task you to be helping out with this, so we’re working hand in hand like that.

Though one worker pointed out, “it’s not the experience of the whole population” the propensity for someone with a shared background and language to “know what it means… to have the experience” and the understanding of “what’s going on in my society”, was widely recognised as a benefit to service users (and to services as a whole). In the delivery of mental healthcare particularly, this was articulated by workers from several services, with shared background/languages seen as ‘providing that assurance’, helping to reduce stigma and build trust in a service, “no, no, no you’re not nuts… and no I work here also” and that some activities, are just “better held with someone who knows more about the culture, knows more about the language”. One worker, who described themselves as coming from a ‘similar culture to the service users’ reflected,

I think it’s amazing that some of my colleagues have had the same lived experiences, because I remember when I was younger, I accessed psychotherapy but I could not relate to my counsellor at all, and I absolutely hated it. It was only when I went to uni and I thought ‘oh, okay, culture does make…’ and I’d just thought I hated the idea of psychotherapy because of my culture, but it wasn’t, it was more because I couldn’t relate to my counsellor… and I think in any role you need to be able to relate.

Working in ‘the mother language’ of patients was seen as helping the therapeutic exchange to be more sensitive,

In every language there are words, expressions, that we cannot translate. So it’s not easy for people sometimes to express themselves, say those words or those expressions, their thoughts, their feelings in other languages. We cannot translate it….

It instils more confidence… it’s much more trustworthy because an interpreter communication has always those flaws, a risk of excluding important detail… Working with an interpreter is not the best solution. I mean it’s the best solution given the circumstances that we do not speak each other’s language but….

The individual

There was some emphasis on being clear that ‘every migration tells a different story’, that people’s experiences and cultures should never be homogenised, and the value of making an effort to develop an understanding of each individual’s context. Showing an interest appeared instrumental to each service’s approach to care. That might be following trauma-informed principles or simply acknowledging someone’s ‘terrible’ or ‘very difficult’ situation. There was an interest in current events taking place in someone’s home country, though handled carefully, with several workers explaining that they don’t tend to go into much detail about ‘someone’s journey’. It was common to show an interest in what people used to do in their home country, to “ask about [someone’s] affinities and what [they] liked” and this was seen as a way of understanding the person and their cultural habitat. A ‘genuine curiosity’ of others’ worlds, creating more equal relationships of ‘trust’ and ‘reciprocity’, ‘in this way he is teaching me so we are the same… and this is going to create a better self-esteem’.

People talked about taking time to understand someone’s ‘rituals, traditions, behaviours, that come from their cultures’. In different contexts this seemed to be a clear priority, “just get to know them… what they want to do, what are their expectations… [and] what can be achieved together”. In this way, volunteer advocates talked about giving people,

A lot of time… we stay and then chatting with them and making sure everything is okay… we talk about their problems… what makes you happy? They talk to us about finding places… we make sure you’re really happy before you leave this building. That’s our priority. We don’t work with minutes or with time…

This interest in the individual came with the practice of facilitating, supporting or signposting in response. Here, social prescribing services were important: ‘It’s all about connecting you with your community’. It requires placing the individual in a space of autonomy, creating the conditions for ‘people themselves who have the wisdom to resolve their problems’ to be ‘part of defining the solutions’.

A further rationale for community-based consultation, was the need for,

Honouring the experience and the knowledge of the refugee themselves but it’s also kind of capacity building of the social assistant. Not to see a victim but to be culturally sensitive. To be aware of the migration experience. Not to start from I’ve got this man before me he’s a refugee… but who was this man in his home country… what can we continue. Because the mourning process is helped by continuation… So okay he was a lawyer, his diploma is not recognised so he cannot be a lawyer but there is some kind of analytic capacity so how can we translate it in our labour market.

The individual and their circumstances: caring communities, coping and resiliency

The complexity of patients’ contexts was widely recognised and practice actively sought to engage with, influence, or support an individual to navigate their wider situation. There was acknowledgement to patients of the ‘many stress factors’ shaping their experience,

A lot of the symptoms that we think could be from a psychological origin [are] much more related to the mourning process of migration… it’s a loss experience and the stress of acculturation… you should not come to a psychologist; in that sense, a teacher or social assistant is much better placed to resolve this stress.

The same interviewee went on to explain,

Talking about wanting to have your job back doesn’t help. It’s much more helpful to have a good social assistant thinking about what you are able to do, and to translate what the refugees still can do, into the new environment. ‘Okay, this is possible… this is not possible….

People talked about clients as “disconnected… from all the resolving or the problem-solving skills… problem-solving resources” of home and that it was these that services and receiving societies “have to put in place through informal or formal aid so that [people] can at least, get back on their feet and solve their problems themselves.” There was a commonly shared view that ‘it takes a society to heal war trauma’ and an emphasis on ‘prioritising daily stressors’. This included giving attention to ‘environmental factors’, ‘basic needs’, a ‘good lawyer’, ‘schooling’, ‘leisure activities’, ‘financial situations’, ‘barriers of language’ and ‘enforcing social contact’. These were seen as “instrumental in improving people’s circumstances” and “for stabilisation… coping mechanisms… as long as you’re in the asylum procedure”. This was often given as justification for well-being aspects of provision or work that took place with other sectors to support redress of these conditions. One interviewee described the need to affirm the importance of reconnecting people with their inner resilience,

First of all, is that you know, people have already come from a very difficult area and sometimes… because they have been through so much, they don’t see their own strength anymore. So that’s where I try to have the person relate themselves back with how they have overcome already so many obstacles and that they have it in them to make something good out of this bad.

Services actively created the conditions for social connections such as through group activities, the involvement of peer advocates and social prescribing. Making possible the connections with communities, faiths, interests, nature, sports, language classes, learning, training, volunteering and work opportunities were all important, supporting the capacity, through knowledge and confidence, for people to independently engage with services and make more informed decisions about their health: “[People] just need a network around them to support them in adjusting into a culturally new environment”, “when [these] things start to improve their mood starts to improve…”.

A ‘systemic view’ of health and of the further deterioration of mental health explained services’ efforts to engage front-line workers in schools, social welfare and housing. Making those responders, who were seen as having a more confidential relationship with individuals, ‘aware’ to consider ‘basic needs’, ‘resiliency’ and ‘how trauma works, and this is what you can do’ was part of a multilayered perspective and focus on ‘changing the rules and advocacy’. Each service in some form drove broader shifts in local responses: meetings with dental hospitals and community mental health teams ‘to explain the needs of our clients’; highlighting referral procedures that don’t recognise particular ‘vulnerabilities’; advocacy with housing, ‘to get a family with children with disabilities living in a hotel room into a proper house’; ‘myth busting’ and increasing understanding of pre-arrival experiences; reminding colleagues that interpreter services ‘are free, here’s how you use it’.

A free Helpdesk for care providers offered by one service was available for outside professionals to seek advice and new perspectives on a specific case. Another service offered Multidisciplinary Team (MDT) support to other areas, and there were offers of formal and informal training, intervision and supervision to external agencies or individuals.

A systems battle

In constant tension with services driving a community of care and a permanent point of bordering for individuals was what we have termed, a systems battle; immigration policies and institutional structures governing the broader care and social adjustment of patients and clients and diminishing and frustrating impact. At a functional level, ‘demystifying’ the ‘terribly entrenched bureaucratic structures’ of health and societal systems and supporting service navigation was a central activity provided by most services.

Despite variabilities for people with different immigration statuses or nationalities and across the different national contexts studied, racialised discrimination and xenophobia in health systems, community aggression, violence, including in schools and on the peripheries of accommodation sites were all acknowledged by service users and workers. But it was the hotel regime, that ‘adds to people’s stress’ that was of greatest concern.

One person told us, “it’s really, really helpful to just get out” get involved in things and “see other places” but accommodation was often isolated, confined to an A-road and supermarket only or an unaffordable bus ride to and from services and communities. Faith appeared to be a strength for some people, as were volunteering opportunities. Some talked about “deep depression” … “you’re in the same room 24/7” and workers talked about witnessing a “loss of hope”. People smoke in shared rooms, sometimes of up to nine people, often with no windows or “sometimes they will open a crack”. People tell us that in some rooms where there are windows, there is often no way to block out the light. People described “no opportunities or activities inside the hotel… nothing to be busy with… no single opportunity… just I can run on the main road up and down”. Everyone talked about food, including food affecting people’s mental health. This included the sense of a “loss of role from what they were used to… looking after the house, cooking their food…” and the sense of dehumanisation. From daily meals served on throwaway plates with throwaway cutlery and throwaway cups. People explained how there is often “no food from 5pm to 9am”, that meals are only ever “chicken and bread”, and some resorted to “living off biscuits” because there is no halal information, and people don’t trust the food nor what they are told about it.

The diet that [people] would have… they’ve lost… you’re eating food that you’re not even used to… that probably you think is making you unwell. Like someone’s diabetes and eating chips every day is not going to be helping anyone.

People talked about coughing… Flu… COVID symptoms but no COVID tests. You cannot sleep either, several people tell us because of your own nightmares or because of someone else’s. One worker offers some techniques for managing nightmares but later explains, “they need at least a proper environment… in a hotel, therapies won’t work… these are very, very hostile environments”.

There was often talk of people living “in constant fear that somebody’s going to knock on the door and say, ‘get your things together, there’s a taxi outside’”. People are moved without being informed in their language what is going on, often with no warning and other times with warning but then it is not carried out. Workers talked about the impact that this has on people, “on their levels of anxiety”, “on their health care”, away from “the trusted service”, “split up from family”, they will “lose their friends”, “the networks of support” that people have built up, they will “miss out on their health assessments, or their care is disrupted….”. One service explained, “you know, they’re all human beings they’re not just numbers… what we’re sort of doing is re-traumatising them through the system… we’re disempowering them”. One service had developed a handheld health record as a means to address some of the disruptive consequences of patient relocation meaning that the physical record would remain with the person to facilitate continuity of care once relocated.

These spaces are policed by men in high-vis jackets, lots of them, steel-toed boots, walkie talkies; some wear stab vests. You get mixed impressions as to whose safety they might be protecting. In one hotel, the toilet is out of service, with some suspicion that this is rather a ploy for preventing people congregating in the only shared space, the vestibule of the hotel; in most hotels there is nowhere to congregate at all. In another people tell us that only recently have rooms and showers started to be cleaned, people tell us it is a balance between challenging and retaining a relationship with these systems.

More than healthcare, what people really wanted was “to work… to have my papers as soon as possible…” If we can’t change that… you’re shaking your head… “Nothing… nothing actually… nothing, it just depends on yourself and how much you can handle…”.

You’ll not starve, you’ll not sleep in the street but you’re not allowed to work… you’re not allowed to do anything… as an adult, that’s devasting. No services, no activities, no nothing, just stay in the hotel until [they] decide. Well, that’s okay if it’s a few months but sometimes it drags to years. It drags to years and then you are mentally demolished, and you feel that you are worthless.

I think another person who doesn’t understand how it is to be sitting there. Everyday you’re looking at your phone. Every time an email comes in, you’re checking it’s the Home Office. When you miss a call, you get frustrated, what if it’s the Home Office… That gets to you without you knowing it.

Workers talked of “sometimes… feel[ing] like you’re flying by the seat of your pants and putting out spot fires”, that they are merely keeping a patient’s “head above water”. Several questioned “the cost”, “the work”, and “the burden” on health services for “keeping people like this”.

Systemic cohesion and fracture

Partnerships and relationships were a ‘vital piece’ of each model of care; between (re)settlement services, NGOs and community agencies, schools, social workers, carers of unaccompanied children and some accommodation sites. GPs were sometimes integrated or strongly associated with services and usually colocated, providing mostly informal, supportive relationships both ways, clinical support and advice, the shared or coinforming on patients’ initial health assessments and receptive to concerns.

We are able to phone practice managers, discuss a particular case or a general issue with [a] local practice, prioritise a case of concern, and they will listen, they will take us at our word, you know.

A programme of refugee health fellows, a rotating group of on-call specialists (such as paediatricians and infectious disease specialists) was associated with one service and provided support and secondary consultations and were seen to ‘unblock the pathway’ where there was concern about urgency or a particularly vulnerable case, “sometimes you can call the fellow and they’ll wander down to the emergency department, ‘I’m sending them to the ED now but can somebody when they get there, just like, fish them out and make sure they get where they need to go because they’re really ill…’”

Formal multidisciplinary meetings enabled broad issues “to be discussed”, plans “formulated” and “plugged into the local networks”. Some services talked of stakeholder meetings for “organisations that are interested in refugee health” some well attended, others explained that “health [and] accommodation services … sometimes just fall off the radar”.

On the whole, good relationships appeared to have either been long-existing, “like who do you know…”, or had relied on working very hard,

It’s very much on their terms whether we have that good relationship… [we] try to change things for the positive and create systems change more than to criticise or condemn… obviously we do at times, we have to make complaints and raise quite serious issues but on the whole we bite our lips and try to do what we can to improve especially with the NHS [National Health Service] as well… it’s about improving the system rather than condemning them for what they’ve done wrong.

There was some indication of benefits where services could embed staff or build strong connections with regional/state/national structures. Some strategic ‘influence’ with access to decision-makers, commissioners, taking that ‘voice [from] on the ground’, trusted across the different sectors and institutions and in a position to ‘nudge’ decisions, funding and practice.

There was a feeling that good things happened because of individuals and not by design and concerns were commonly raised relating to the coordination and communication of information, responsibilities and commitments across broader systems and services. Data were seen as a factor here,

I think that these individuals get lost in data sets… they’re not coded as asylum seekers for the most part, so there’s no way of identifying how many asylum seekers are registered with GPs… And because they are one patient or a small number of patients in a list size of thousands, they don’t get noticed, even within the practice. And because they’re looked after by generalists, not specialists, again they don’t necessarily understand the needs to identify it or advocate for their needs. So, I think all of those things mean that they’re quite invisible.

There was talk among service users and workers of an abdication of responsibility, particularly within accommodation settings. Left often to other residents to care and look out for their peers. Who will call the ambulance? Who will check on each other? We hear about a young person,

He described a terrible journey… ‘I am 17 years. The Home Office decided to add 10 more years on my age. I’m now 27 and I want to kill myself’…. Do we call for adults or do we call for the children… Adult services… Crisis Help… CAMHS?

The young person ends up at A&E,

If he’s a child he’s not supposed to be in a hotel, he’s a minor…

Over the phone, Crisis Help tell them,

Please make sure there are no sharp objects in his room… a health hazard’. We can’t do that. We don’t have the authority to do that. We ask the hotel to do that, the hotel team are like, ‘we can’t we’re not allowed to do that’. We ask the housing team as well, they’re like, ‘We just accommodate them, we cannot go and do a search in their rooms’. So, it’s a complicated issue. You know. We’re standing there and we know he’s at risk but how do we help.

Suicidal thoughts and self-harm are commonly discussed. Who strategically is thinking about refugee patients and the healthcare of forced migrants, “there’s nobody highlighting them and they’re lost in the whole picture… commissioners really don’t have any idea”.