The team behind the Digital Health Inclusion Project check in with the Breakfast and Browsing group at Burmantofts Community Friends. This blog was written by Lily Arnold and Emma Carta (UCL Research Assistants).

Introduction

The Digital Health Inclusion Project at UCL has been researching Digital Health Hubs across Leeds for the last year. These hubs are part of a community based approach to digital inclusion, facilitated by 100% Digital Leeds, in collaboration with VCSOs and the health sector.

As the project wraps up, we took a last visit to the Breakfast and Browsing club run by Burmantofts Community Friends, to check in with the group members about our initial findings. Some members have given their time to the project already, but this workshop allowed us to open up discussions with the group and hear more experiences and perspectives.

Digital exclusion has wide-ranging implications for individuals, including poorer health outcomes, increased social isolation, and limited access to essential services. The National Government has been criticised for lacking a credible strategy and failing to prioritise the issue of digital exclusion effectively. But local authority led interventions in Leeds, which are delivered through community hubs and partnerships, play a crucial role in reaching digitally excluded individuals and building essential skills and confidence.

Workshop Overview

We began the session thinking about what works well at the Breakfast and Browsing group, asking the members why they enjoy coming along to the sessions. Then, armed with craft supplies, we turned these discussions into recipe books coming up with recipes for getting online.

While participants mostly only finished the covers of their recipe books, the conversations happening around the table were very insightful! As the workshop drew to a close, instead of a recipe book, members of the group asked for their work to be turned into a poster which could advertise the Breakfast and Browsing sessions to a wider audience.

Key Findings from Field Notes

• Participants enjoyed and appreciated the warm and welcoming atmosphere of the group, and talked often about the importance of social connections and friendship. Multiple times, and in different contexts, the word ‘family’ was used to describe the bond the group felt to each other.
• Breakfast and Browsing meets the need for personalised and flexible approaches to digital inclusion, and it recognises the diverse needs and preferences of individuals who attend the session.
• In depth, ad hoc, one on one digital inclusion work takes place at the periphery of the sessions, with light touch scaffolding at the centre for those who want to engage.
• The breakfast element of Breakfast and Browsing is so much more than just a meal, eating together contributes to the warm atmosphere of the group and establishes a trusted routine.
• The time the group runs on a Monday morning was also noted as being useful, with participants describing their participation as starting the week off on the right foot.

Checking in with the Breakfast and Browsing group provided valuable perspectives from participants on what makes Digital Health Hubs successful. Just as the group requested, here is a poster which combines their different ideas together to advertise the session for more people to join:

A blog from Community Researcher Sean Chou in his own words. 

‘It’s important to get feelers out there and really get to know the community.’

At the beginning, I felt nervous about being a community researcher. It was a role that I was keen to get stuck into – having studied Anthropology as an undergraduate, I felt equipped with the curiosity and listening skills needed to glean insights from residents. But it was also one that I really didn’t want to get wrong. What if I said something offensive? What if I came off so keen to chat that it came across as awkward?

All of these doubts were soothed by the words from my research supervisor, Tamsin. I had regular weekly catch up meetings, as well as one-to-ones, where I had a safe space to share feedback on research and how I felt during research. It felt humanising to acknowledge that research has a person-centred approach, that the researcher themselves could have fears or internal doubts to reckon with.

But it was Tamsin’s personal touch that lit a flame in me. Tamsin had a keen interest in sustainability and building resilient communities with environmental solutions, and I was impressed to see how an interest in helping the local community in Brent could be knitted together with one’s own vision for what a better society could look like.

For me, that was about the community helping to lead change. Our research project looked at health inequalities in Brent, as well as how residents used community assets to tackle these inequalities. These went beyond just the ‘obvious’ physical assets – libraries, parks, civic buildings, to include the ones the communities valued themselves. Partnerships, mutual aid groups, classes, all of these are relationships that tie us together and ultimately make up who we are as holistic, social beings, rather than atomised, individual units.

This is especially the case [for our?] health. I attended community events organised by Brent Health Matters (BHM) which aimed to promote positive health outcomes, healthy living as well as register and signpost attendees to health and medical services such as GP registration.

I was able to see how attendees were tied together – or sometimes not, and sometimes made vulnerable, by their health: a mother with two children attended an event, not speaking English, but helped by my fellow researcher to translate her symptoms so the GP could make the right diagnosis. A woman who attended a floristry class saying that she attended because this helped with her mental health and make friends; if she wasn’t here today, she didn’t know what she would be doing. A night shift worker opening up to a BHM health worker about diabetes in her family, before breaking down crying about her family in Bangladesh. As I watched her be taken away by the health worker to talk somewhere more private, away from prying eyes, I was reminded of how health is a sensitive, emotionally charged experience for people. When we’re told by someone we love that we’re unhealthy, it often comes off as judgement – ‘You’re not doing enough to get healthy, you’re slacking’. But our physical health is often entangled with work, family, caring responsibilities that make it difficult to recentre our lives around living healthily.

But it also reminded me that some groups are more susceptible to poor health outcomes than others – those with low incomes, women, community groups, those from migrant backgrounds. BHM targeted these groups by bringing events to them. Community centres, places of worship, football pitches, food halls – all of these were places used to bring health services and awareness to communities, and ultimately bring communities together.

I was fortunate enough to be able to connect with the Chinese community. As a British Taiwanese person myself, I felt well placed to strike up rapport with those active in the community working across many different charities and local venues. I had conversations in Mandarin Chinese and bonded with members of the community over shared cultural festivals and cuisine. But I could also make sure that research was done for and by us, not just about us – in interactions and interviews, I made sure to emphasise the importance of residents’ views and ensure that research was led by residents’ interests from the ground up.

I am proud then to call myself a community researcher. From my experience, I have been able to connect my personal background with relationships that structure people’s wider access to healthcare. It remains vitally important that such work, centred on lived experiences, recognising others, listening to in-depth stories, continues through participant observation and interview research methods. Throughout my time as a community researcher, I’ve learned how to approach residents with empathy and curiosity, learned to tap into their views with interviews and produce data that represents the multi-dimensional, complex lived experiences residents have. Such data underpins ultimately why it’s so important to conduct community research, to see the people we study as holistic beings made up of different commitments and relationships, but ultimately brought together to be with others and lead a good life.

Want to find out more about the experience of our Community Researchers? Take a look at this zine by Sarah Al-Halfi.

This blog is written by Caroline Shulman and Megan Armstrong. Caroline has worked as a GP for people experiencing homelessness in primary care and as a clinical lead in a hospital homeless team. Caroline is principal investigator (PI) on a range of projects on palliative care, frailty and homelessness. Megan was the senior research fellow on this project and currently is the Programme Manager of PD-Care and the PI of exploring self-management in those experiencing low socioeconomic deprivation. 

Though everyone’s circumstances are different, to support people experiencing homelessness, it helps to understand some of the underlying causes of homelessness. Systemic factors such as austerity, increase in poverty and inequality, regressive changes to welfare systems, increased job insecurity with more zero hours contracts, lack of affordable housing and a hostile environment for migrants have contributed to significant increases over the last decade. However, in addition, there are individual vulnerabilities that increase the likelihood of becoming homeless. It is estimated 90% of people who are homeless have experienced adverse childhood experiences with 54% experiencing four or more (1). Adverse childhood experiences include abuse (emotional, physical, sexual or neglect) and household dysfunction such as living with domestic violence, or with a family member who has an addiction, is suicidal, mentally ill or in prison. Lack of having needs met and being soothed as a child impacts on cognitive, emotional, and social development and unresolved trauma is associated with an overdevelopment of the emotional and reactive parts of the brain (2).

People experiencing homelessness have some of the worst health outcomes of any group in society with the average age of death being in their early 50s  (see here). They have a much higher rate of most long terms conditions, including heart disease, respiratory disease than even populations in the most deprived sectors of society. Conditions usually found in older populations, such as cognitive impairment, incontinence, poor mobility, and frailty are highly prevalent at a young age in this population. Many people, with a history of sleeping on the streets in London, end up on homeless hostels. Homeless hostels are staffed by support workers who have no training in health or social care. In one hostel (for adults aged 35+), where residents average age was 55, frailty scores were equivalent to a population of people in their late 80s. All had multimorbidity with the average number of conditions per person being seven. Older age conditions such as cognitive impairment, falls and poor mobility were highly prevalent, though only 9% had any form of social services package of care (3).

One reason for the young age of death of people experiencing homelessness is the barriers they often face in accessing health and social care. Our study aimed to explore these barriers and potential facilitators from the perspectives of hostel residents and staff (4). We interviewed 18 homeless hostel managers/support staff and 15 people experiencing homelessness from six homeless hostels in London and Kent.

We found there were service barriers to health and social care access due to:

Stigma of both the residents and the hostel staff (often reporting not being believed):

“We have got one of the local GPs around here, they will not accept our residents unless a keyworker is with them, and they have to attend all appointments with them and register with them. They won’t accept them on their own.” Support worker

Lack of communication and information sharing from services with the hostel:

“I was that upset and annoyed that she’s [social worker] not speaking to anyone else that I’m working with [in the hostel]. I said, “It’s not keeping you up to date.” I speak to you once every three weeks, you don’t know what’s happening. So I could be going through a really difficult time and you’re not aware of it….” Resident

A lack of trust from the residents and a struggle to build relationships beyond the hostel staff:

“I’m still finding I’m having to learn to trust people. I don’t always trust people now, and my confidence is not brilliant. Once I know someone [this is different]…., but I’m not very good coming forward at the beginning.” Resident

Incorrect assumptions around capacity and the role of the hostel:

“I think because a lot of people presume because it’s [the hostel] a 24-hour manned project, they’ve got staff. They [external services] don’t really realise that our job isn’t to be carers…It’s not always practical to see everybody every single day. What people see from the outside is 24-hour staff” Support worker

The impact of lack of health and social care support led to staff going beyond their job role, continuous support needed by the residents, and burnout:

“We also have to go and collect people’s medications. We don’t have to but we’re doing that as well and liaising with GPs to put [medication] in dosette boxes and things like that.” Hostel staff

Overall, the hostel staff and residents had a great, trusting relationship. However, due to the lack of external service support, this can become a huge responsibility for the hostel staff. The quote below highlights the trust in the hostel staff.

“I think she [hostel staff member] cares about me. I’ve never actually asked her, does she care? The staff here are alright, I like them. I like the staff here. I ain’t got a bad word to say about them.”

An example of the causes of burnout for hostel staff include the trauma when a resident dies:

“When he was standing along the walls and he was saying, “I’m feeling pain,” and he just slid into the floor. It was during the night, early morning so there were only two staff. Staff were running up and down. It was quite a traumatic experience.”

See our recent paper and blog on palliative care for people experiencing homelessness.

What does this mean for primary care?

• Everyone needs to be able to register with a GP. Groundswell have developed ‘My Right to Healthcare’ cards that can be posted for free.
• Training is available for reception staff including a short 6 minute video: resources here
• Primary Care Networks should consider having an inequalities lead to explore local solutions. They could also undertake a self-assessment to support improved engagement with inclusion health groups (see here).
• Services should be person-centred, and trauma informed so that people feel safe, welcome, listened to and understood. Here is a video on trauma informed communication skills and an overview of training available here.
• Services need to recognise the importance of developing trust and trusting relationships, as these are at the heart of healing and recovery. Ideally with the continuity of care with the same provider.
• Services should  proactively support people with literacy, language, and cognition difficulties.
• Primary care services should consider how they can take care to people with the highest need to enable trust to be developed. For example, enhanced services undertaking in-reach into hostels can be highly successful in increasing engagement. Reaching out to frontline staff in homeless services, who often feel stigmatised, can be a first step in acknowledging the support they are providing and explore how they can be better supported.

It is our duty to find and care for those in our community who are excluded and marginalised and advocate for their needs. We need to embed inclusive care and assertive advocacy as core to our work.

References

1. Liu, M., Luong, L., Lachaud, J., Edalati, H., Reeves, A., & Hwang, S. W. (2021). Adverse childhood experiences and related outcomes among adults experiencing homelessness: a systematic review and meta-analysis. The Lancet Public Health.
2. Bennet, M.S. (2017), ‘Connecting Paradigms: A Trauma-Informed & Neurobiological Framework for Motivational Interviewing Implementation’, Bennett Innovation Group, Denver.
3. Rogans-Watson, R., Shulman, C., Lewer, D., Armstrong, M., & Hudson, B. (2020). Premature frailty, geriatric conditions and multimorbidity among people experiencing homelessness: a cross-sectional observational study in a London hostel. Housing, Care and Support.
4. Armstrong, M., Shulman, C., Hudson, B., Stone, P., & Hewett, N. (2021). Barriers and facilitators to accessing health and social care services for people living in homeless hostels: a qualitative study of the experiences of hostel staff and residents in UK hostels. BMJ open, 11(10), e053185.

Authors: Chantal Edge, Al Story, Andrew Hayward

As the UK continues to wage war against COVID-19 the news is awash with stories speculating when vaccines and diagnostics will become available, and when life can return to ‘normal’ for the general population. Yet amongst these reports we hear very little about society’s most marginalised groups. What has the UK been doing to protect and support the most vulnerable – homeless, prisoners, drug users, and what problems do they foresee for these groups in the near future? We asked the UCL Collaborative Centre for Inclusion Health (CCIH) what they’ve been up to in support of pandemic response.

What is the UCL Collaborative Centre for Inclusion Health?

The UCL Collaborative Centre for Inclusion Health (CCIH) was set up by a multidisciplinary team of researchers, experts with lived experience and frontline professionals who are dedicated to reducing health inequity amongst socially excluded groups. Inclusion Health is a service, research, and policy agenda that aims to prevent and redress health and social inequities among the most vulnerable and excluded populations such as homeless, prisoners and drug users. The Centre is co-directed by UCL’s Professor Andrew Hayward and Dr Alistair Story, Clinical lead of the London Find&Treat Service.

COVID-19 and socially excluded groups

Homeless accommodation

At CCIH we were very aware early on in the outbreak that excluded groups would be highly vulnerable. There was a well-timed conference – 2020: A Decade for Inclusion – on homeless and inclusion health justbefore the UK went into lockdown, which we used to raise awareness across the homeless sector about what needed to be done to prevent outbreaks, particularly within overcrowded hostels, night shelters and day centres. We were able to secure a lot of support from different agencies, for example, the Ministry of Housing, Communities and Local Government set up an initiative to place those living on the streets in hotels and to close down the large hostels in which people share dormitory-style accommodation. This was achieved incredibly rapidly, over the course of about a week. We’ve also done a lot of work to raise awareness in settings which remain vulnerable to outbreaks, including improving social distancing by encouraging closure of communal areas, and strict rules about social distancing measures. We’ve been able to bring in drug treatment services and addiction services for people with very challenging addiction issues. A pan-London methadone-prescribing service has been established so that homeless people can get access to substitution treatment for addictions much more easily than they would have done on the streets. This video tells the story about one such homeless hotel in Shrewsbury.

We’ve also established what we’re calling a COVID-CARE hotel in East London for homeless people who are diagnosed as having the disease. They are referred from the streets, hotels, hostels, Secondary Care and A&E departments across the capital to be clinically monitored in a safe infection control environment. The accommodation is provided by GLA, while the medical staff are provided by the UCLH Find&Treat team working with Médicins Sans Frontières (MSF) – this is the first time MSF have deployed in the UK, a video about this work can be found here.

Another aspect of our work has been to establish a surveillance system with UCLH Find & Treat and led by Miriam Bullock, through which we survey hostels for COVID-19 control and social distancing measures, suspected COVID-19 cases and related hospitalisations or deaths. This surveillance system triggers telephone triage and advice from the Find&Treat team who are outreaching same day testing to homeless people across the city with three outreach teams.

Prisons

Public Health England and the prison service have published guidance on their management strategies for COVID-19 in prisons and have as yet managed to avoid the ‘explosive outbreaks’ predicted at the start of the pandemic. Yet healthcare delivery in prisons remains challenging now that inmates are confined to their cells for up to 23 hours a day and many staff are off sick or isolating with COVID-19 symptoms.

One of the CCIH PhD fellows, Chantal Edge, has paused her work on local prison telemedicine implementation in Surrey, to go to the central NHS England Health and Justice team to lead on the rapid deployment of prison telemedicine nationally. Telemedicine will be scaled up across 135 secure sites in England including prisons, immigration removal centres and secure children’s homes. Approvals have also been secured from the prison service to deploy NHS 4G enabled tablets in prisons to support the telemedicine work, a ground-breaking change seeing as mobile devices are traditionally strictly prohibited in prison settings.  Telemedicine will remain in prisons after the pandemic and support improved access and quality of healthcare services for prisoners, so in this way the pandemic has driven forward innovation.

Migrant health

Ines Campos Matos, who has a joint appointment between PHE and CCIH has led PHE’s investigation of the high levels of COVID in BAME groups showing how poverty is compounding this inequality.

Advocacy in the media

We have also been working closely with the press to advocate for inclusion health groups including articles on prisons, and homeless hotels and GP surgeries.

Looking to the future

As COVID-19 decreases in the general population following lockdown, we’re moving to a stage of continued vigilance. This is going to be really important because there are likely to be more transmissions when the lockdown is eased. So far, we have avoided large outbreaks of COVID-19 in the homeless community and in prisons. In other countries such as the USA up to half of people in big, night-shelter-type hostels are being infected, our screening finds only about 3 or 4% of homeless people have been infected. Prisons in countries such as Italy and the USA have also seen huge outbreaks, whereas cases in England remain controlled.

There is a concern that people will begin to think the outbreak is over and will start to relax both the social distancing across society but also in the homeless hostels. As the numbers decrease, there will be pressure to close down the COVID-CARE facility and the hotels. Prisons will likely need to keep measures in place to isolate the vulnerable and enforce social distancing for many months, the mental health consequences of this enforced isolation remain as yet unknown.

We’re planning to launch a major health needs assessment (HNA) led by Dr Binta Sultan, to systematically identify the health needs of people within the hotels. We’ll have 38 clinicians doing telephone interviews, and have established referral pathways into mental health, sexual health and drug and alcohol services. We’ll be screening everybody for hepatitis C, then starting people on treatment with the aim of completion while they’re at the hotel. This could have a major impact on the transmission of hepatitis C in the homeless population. We’re hoping to do the same thing for latent TB infection. The HNA will also identify people who need shielding, therefore requiring their own self-contained accommodation. This will move people up the priority list for permanent housing and will help with advocating for their needs.

During this pandemic, many of us are having to change what we do and prioritise everything towards this response. It’s too serious and awful to feel any excitement about the research: it feels more like a war. We’re trying to use every resource and opportunity that we have – and every waking hour – to work out what we can do to help in the fight against COVID-19. It is rewarding to feel that you’re able to make a difference, but it’s heart-breaking to see how terrible it has become.

Chantal Edge is an NIHR Clinical Doctoral Research Fellow and Specialty Registrar in Public Health, researching the use of telemedicine for hospital appointments in prison. Dr Al Story leads the Find&Treat Outreach Service based at UCLH and is Co-Director of the UCL Collaborative Centre for Inclusion Health. Professor Andrew Hayward is the Director of the UCL Institute of Epidemiology and Health Care and Co-Director of the UCL Collaborative Centre for Inclusion Health.