In principle, the NHS provides a service that should be available to all. However, people who belong to inclusion health groups often face difficulties and barriers in accessing and engaging with NHS and other care services.
Inclusion health groups encompass people who are socially excluded, and who typically experience multiple overlapping risk factors for poor health, such as poverty, violence, and complex trauma. This includes people who experience homelessness, drug and alcohol dependence, vulnerable migrants, Gypsy, Roma and Traveller communities, sex workers, people in contact with the justice system, and victims of modern slavery.
People belonging to inclusion groups, tend to have very poor health outcomes, often much worse than the general population, and a lower average age of death. This contributes considerably to increasing health inequalities. One study found that homeless populations, individuals with substance use disorders, sex workers, and imprisoned individuals ‘experience extreme health inequities across a wide range of health conditions’.
Core20PLUS5 is a national NHS England approach to support the reduction of health inequalities at both a national and system level. PLUS groups are population groups, defined by integrated care systems (ICS), which experience poorer than average health access, experience and/or outcomes across their communities. This includes inclusion health groups.
Here we look at how three ICBs are working with inclusion health groups, and how building partnerships to provide support is helping to get to the heart of these communities’ needs, and providing truly integrated care.
Bedfordshire, Luton and Milton Keynes ICB engage with the Roma community
Luton is home to a substantial Roma population. This community comes from all over Eastern Europe from countries such as Romania, Bulgaria, the Czech Republic, and Slovakia.
During the Covid vaccination campaign the Roma community ‘came into sharp focus’ from NHS Bedfordshire, Luton and Milton Keynes ICB (BLMK ICB), says the ICB’s chief executive Felicity Cox. ‘We realised there was a lack of understanding from the ICB about how this community accessed health and care services, which are so different from their country of origin, and that they needed additional help to understand our complex system,’ she says.
The Luton Roma Trust, a charity supporting the Luton Roma community, had also identified that access to healthcare was one of the main challenges facing this community, with barriers including language, low levels of digital literacy, and discrimination.
As part of the ICB’s Denny Review into health inequalities, it commissioned research focused on the Roma community and how to support this group in terms of health inclusion.
In order to really understand the Roma community it was ‘important to partner with groups that had trusted access to that community’, says Ms Cox. The ICB worked in partnership with the Luton Roma Trust and the Institute for Health Research (IHR) at the University of Bedfordshire on research which aimed to ‘engage in a dialogue with the Luton Roma community and professionals who work with them, to better understand their views on accessing healthcare services, and to co-develop solutions’.
‘The value of partnerships is bringing different expertise to the table,’ says Professor Nasreen Ali, professor of public health equality for the IHR. ‘Working with the Luton Roma Trust has meant that we have had access to the lesser heard voices, which has been important for this piece of work,’ she says.
A ‘Talk, Listen, Change’ approach
The study was carried out over 12 months and included interviews and focus groups with Roma people. It took a ‘Talk, Listen, Change’ (TLC) approach to looking at the issues facing the Roma community in Luton. Professor Ali explains this approach is about ‘a deep understanding of communities’, and involves recruiting researchers who are from the same backgrounds of the communities they are engaging with. This means researchers can ‘reach out to hard to reach communities’, she says.
‘We feel our approach empowers participants – they can be open and vocal with what they want to say. And researchers are able to collect their lived experiences, which are so rich because of the trust that has been built up between researchers and participants,’ says Professor Ali.
The approach allows for better quality data, and in depth contextual information, she says. ‘It also activates communities to be more self-critical and open, and to share ideas on how they want their circumstances – in this case access to healthcare – improved.’
The study involved 64 participants, 11 focus group discussions, and nine interviews with people working with the Roma community to establish what the healthcare needs of that community were. All the researchers spoke the Romanian language, and data was collected during June and September 2023.
The study findings highlighted how the Roma community did not know about healthcare services or referral routes, had difficulty accessing GP appointments, that there were language and communication barriers and limited availability for translators, and poor literacy and digital abilities, says Professor Ali.
The findings also highlighted how contrary to common perceptions the Roma, Gypsy and Traveller communities are highly distinct – with Romas being a settled community and Romanian their first language. And participants said how they wanted to be called ‘Roma people’ or the ‘Roma community’ rather than ‘Gypsy” or ‘Traveller’.
A lack of understanding of Roma people in health settings, perceived discrimination and a mistrust of authorities combined to leave a gap in provision, leading many Roma people to return to their home countries to access health services, contributing to delays in treatment and in many cases, worse health outcomes than other minority groups, the study found.
A member of the Roma community said: ‘If communication was better between me and the doctors, 99% of my problems would be solved.’ Another added: ‘There is no one to help inform people about health services in a way that I understand. I come here to a foreign country, I don’t know the language and I don’t know where to go, who to go to for more information about what I need.’
The research findings provided an action framework for the ICB to put in place ‘inclusive interventions (prevention and health promotion activities/events) that acknowledge and address the barriers impacting on the Roma community when accessing healthcare’.
‘These interventions should be facilitated using the community connector model to build a culturally nuanced and trusting collaboration between the Roma people and service, to reduce inequalities and improve health outcomes,’ the study report, published this April, concluded.
Already, the ICB has put together a team that it is hosting, ‘who are going to deliver programmes to support all of the Denny Review’, says Ms Cox. ‘Everything we do now is screened through the findings of the Denny Review, including the Roma community report – so respecifying some services, making sure to take into account those populations that we’re not supporting in the way that we need to, to really make sure that our health inclusion populations are treated well.’
From 13-17 May 2024, the ICB held an inequalities week with a conference at the University of Bedfordshire, attended by over 100 people, including partnership members, who came to ‘learn and share’, says Ms Cox.
The ICB is also starting work on taking forward a system wide translation service, and is introducing cultural competency training of healthcare professionals.
Of the Roma community project approach to supporting inclusion health groups, Ms Cox says: ‘It’s about building trusted partnerships so that you work with a community using people from that community, and then act on the findings. Now we’ve got to put that knowledge and understanding from the report to take the next steps. I hope we can make a difference. We’re here to integrate – and that’s what we need to do.’
Sussex ICB cares for sex workers
NHS England’s health inequalities allocation funding for 2023-24 has enabled NHS Sussex to launch a health inequalities small grants project that builds on the success of its existing inclusion engagement programme.
The funding enabled NHS Sussex to award small pots of funding to voluntary and community sector (VCSE) partners to gather insight from communities and work with them to co-produce solutions to barriers they faced in accessing health and care services.
Planning began in February 2023, with a look back on the available insight for communities experiencing health inequalities in Sussex. ‘This research identified where we had gaps around some of our most marginalised communities, including the experiences and health and care needs of sex workers in the region,’ says an NHS Sussex spokesperson.
‘Recognising there are often issues around trust of the NHS in these communities due to historic negative experiences and access to services, local VCSE were considered to be better placed to engage and work with the communities they represent as they are considered trusted intermediaries.
‘Once the need had been identified, we launched the small grants programme to our VCSE partners, describing the communities we were interested in gathering insight from,’ says an NHS Sussex spokesperson.
Local VCSE partners were then invited to submit a 100-word summary of their responses which were screened to ensure they were in scope before submitting a detailed Expression of Interest. Partners were encouraged to collaborate on their final responses, which were evaluated by a multidisciplinary panel that included a member of a supporting VCSE, Community Works, to ensure a fair process.
Over 90 organisations applied, and, in the autumn of 2023, NHS Sussex allocated funding to 26 bidders. Successful programmes covered numerous communities, including travellers, asylum seekers and refugees, the blind and visually impaired, carers, the homeless, survivors of domestic abuse, people living in deprived areas, people living in rural areas, LGBTQ and ethnic minorities.
The Oasis Project
Brighton charity Oasis Project, a substance misuse service for women and their children that works closely with sex workers, was awarded a grant. ‘This enabled Oasis, which has strong operational experience, to extend their remit to insight gathering,’ says an NHS Sussex spokesperson.
The Oasis Project has 20 years of working with sex workers and ‘prioritise a user-centred approach that addresses barriers to access to services’, says Mel Potter, Sex Workers’ Outreach project manager (SWOP) Sussex.
Before the health inclusion small grants funding, ‘our insight into sex workers’ experience of healthcare was primarily gained on the job in the course of our work’, says Ms Potter. ‘The grant funding enabled Oasis to formalise this work and gather richer insight, to help inform service development around initiation and maintenance of PrEP (HIV prevention medication) and a primary care training course,’ says Ms Potter.
The Oasis Project has delivered a series of focus groups with service users in treatment with more planned. This included through the established SWOP peer support group.
‘We are currently progressing innovative approaches for sex workers that have not previously been reached in this way,’ says Ms Potter. ‘A pilot for delivery of focus groups is being organised with service users to deliver to peers. This will be amongst small groups of friends and social networks, and so we hope to reach some people who may not be using our service.
‘We are exploring options for these to be delivered in home or social settings or delivered online with cameras off to ensure anonymity. This process, in itself, demonstrates some of the barriers that sex workers face in accessing healthcare.
‘Participants have experienced other health issues that were a priority, including substance misuse challenges, or mental health and trauma related to their life experiences and work. We are looking forward to getting new insight as this progresses,’ says Ms Potter.
She says sex workers are being empowered to identify their own priorities for healthcare through the focus groups, rather than taking a prescriptive focus on PrEP. ‘This so far has highlighted that HIV is not necessarily a priority for service users, or even considered a significant issue for those sex workers who have choice and control over their work. Although all have agreed that it is important for everyone to know about HIV, PrEP and PEP (HIV prevention medication) to be able to access it,’ says Ms Potter.
She says the project’s work with sex workers, alongside the insight from discussions so far with service users has highlighted not only barriers that sex workers experience in accessing services, such as their working hours, finding services, ability to travel to services and willingness to be seen outside the relative anonymity and safety of being in ‘their own environment’. The work has also highlighted the need for a range of options according to individual need is required, rather than a ‘one size fits all approach’, she says.
‘This insight reshaped the original planned service delivery model away from a central clinic, to become an outreach model through partners that provided services to sex workers,’ says Ms Potter.
As a result, SWOP facilitated outreach provision with the local sexual health clinic with the service to provide sexual health screening on site and to offer PrEP to a number of migrant women who had struggled to engage with community based sexual health screening options. The SWOP service has facilitated appointments at local clinical and community-based screening services for women to access screening and PrEP.
‘For those individuals who have experienced sexual exploitation, or with less choice and control, they have reported that taking steps to address health concerns and access PrEP has been a step towards feeling more in control of their health as a result, and therefore more confidence in their ability to regain control over their lives,’ says Ms Potter.
GP training
The insight gathering also informed a half-day training session for 50 GP registrars across Sussex. ‘The training was designed to equip them with insight and understanding of the diverse nature of sex work, such as whether it is carried out at a property, online, or street work; and the degree of control individual sex workers may have over their work or lives more generally,’ says Ms Potter.
‘It also placed an emphasis on stigma and how it impacts on an individual’s willingness and ability to make use of healthcare services. Sex workers carry the stigma of professional assumptions and their perception in the media, even where they do not carry self-stigma,’ she says.
This section of the training featured sex worker feedback of their experiences of visiting GPs, both positive and negative. ‘GPs can listen to and affirm the experiences of sex workers, allowing them to open up or supporting them to access confidential clinics or make referrals in the case of sexual exploitation,’ says Ms Potter.
‘The healthcare needs of sex workers are as diverse as the industry itself – and this also influences how easy it is for an individual to access the care they need. It is important this is recognised to ensure sex workers are able to access the right support in the right place at the right time. Timely and person-centred healthcare can not only address health inequalities among this population, it can also help make positive change to their lives,’ says Ms Potter.
The programme will end in August 2024, with final reports to be submitted the following month.
‘Insights are already beginning to emerge from the process, including common themes across communities and more specific insights for particular groups. VCSE partners are building strong relationships with strategic leads and commissioners for their topic area,’ says an NHS Sussex spokesperson.
‘By gaining insights on the difficulties in accessing health and care services that specific communities face, we have started to develop co-produced solutions with the communities, and some of the VCSE organisations have developed training materials for clinicians supporting different communities. Commissioners are also able to benefit from this insight to ensure service design and delivery is equitable and accessible,’ says an NHS Sussex spokesperson.
The Oasis Project programme ‘has already led to tangible improvements for sex workers in Sussex and is a powerful example of how the NHS Sussex small grants initiative is driving real change for inclusion health groups’, says an NHS Sussex spokesperson.
‘By working directly with communities through trusted intermediaries, and especially communities that experience health inequalities, we build services that respect individual needs, empower patients, ensure healthcare access for everyone, and ultimately create improved outcomes for all.’
Hertfordshire and West Essex ICB supports people experiencing homelessness
Hertfordshire and West Essex ICB is actively addressing health inequalities and reducing some of the barriers that people who are homeless may experience in accessing health services.
In August 2022, the ICB began offering sessions providing hot food, access to health services, advice, and support to people experiencing homelessness. Held in collaboration with Hertfordshire County Council and local charities, the sessions were intended to improve access to flu and Covid-19 vaccine clinics, cancer screening, mental health support and support for gambling addiction.
The sessions were held in homeless hostels in Borehamwood, Hatfield, Hemel Hempstead, St Albans, Stevenage, and Watford.
In 2021-2022 there were an estimated 4,343 people homeless in Hertfordshire, says Kevin Hallahan, health inequalities lead for Hertfordshire and West Essex ICB. ‘There is a concern across the system that homelessness has an impact on every part of the system. For example, those who are homeless may attend A&E more frequently than those in stable housing, will have more health concerns, and more barriers to accessing healthcare, such as GP and dental care services,’ he says.
People who are homeless have poor outcomes regarding dental hygiene, and are more likely to have issues with alcohol and substance misuse, poor diet, and mental health issues, he says.
People experiencing homelessness are also less likely to access vaccination services – an issue that prompted the sessions at the homeless hostels, says Aurea Dileto, health protection inequalities lead for public health, Hertfordshire County Council.
‘We set up this initiative around Covid-19 and flu vaccine rollouts and health inequalities to increase the uptake. It is very difficult to get the homeless population to have vaccinations,’ says Ms Dileto.
Funded by government Covid-19 money, initially the project was run by the health protection team, public health, at Hertfordshire County Council, and the ICB.
‘Working with the ICB, we contacted all the hostels in Hertfordshire and arranged for our community vaccination teams to come on to these premises,’ says Ms Dileto. At first, the idea was to focus on vaccinations. ‘But then we thought we should make a bigger event of it, and address some of the mental and physical health challenges that the homeless community may experience.’
Homeless people were not accessing services ‘until their situation was desperate’, she says. ‘We wanted the residents to feel more supported by services, and to increase their trust in healthcare professionals as well. So we decided to arrange ‘health day’ events and invited the different health and care services to attend,’ she says.
Events were held every three months at each hostel. ‘We offered food to encourage people to attend the events – it can be difficult to get people out of their hostel rooms and into the lounge areas,’ says Ms Dileto.
‘We would promote the event by putting up posters beforehand. And sometimes I would knock on the doors of hostel residents to talk to them and try to encourage them to attend the health day event,’ she says.
Signposting support
At the events, residents were offered healthcare advice including cancer screening information – making people aware of signs and symptoms – and were also signposted to other health and care services. ‘If there were hesitancies and barriers from residents I would chat to them about any issues,’ says Ms Dileto.
It is ‘a really well received service from the managers at the hostel, who enjoy the events, she says. ‘And the residents are so positive about them. It is a chance for them to congregate together and do something helpful for their health and care.
‘There was a lot of feedback from residents that they felt more supported – that people cared. They also felt more educated about health issues and more motivated to look after their own health needs. And we hope that following these sessions residents are more likely to access services,’ she says.
The events also provided an opportunity for referrals, for instance, to mental health, sexual health or drug and alcohol services. ‘We tried to make the events as positive as possible. And we did a lot of vaccinations,’ says Ms Dileto.
‘We also found there were benefits to services, including working collaboratively and understanding the complexities of this population. We shared knowledge and insight. It was very rewarding,’ says Ms Dileto.
‘Projects that target cohorts of our population that are vulnerable to experiencing ill health are fantastic – they recognise resources need to be proportionately allocated to support vulnerable cohorts differently, to give them an equitable offer,’ says Mr Hallahan. ‘This homelessness project created sustainable partnerships and highlighted the positive impact of different ways of working to support inclusion health groups,’ he says.
‘In its broadest sense, health inequalities cannot be tackled by a single agency and by working collaboratively with system partners we can address the complex issues affecting our residents,’ says Mr Hallahan.
Since April, Hertfordshire County Council’s Adult Care Services has been overseeing the project, and the hostels are arranging the events themselves. The scheme has ‘taken on its own momentum’, she says. ‘We’ve given them all the information, who to contact, and what to do, and I am still supporting the project if they need advice and help.’
‘When supporting inclusion health groups the ICB looks to have initiatives that are sustainable,’ says Mr Hallahan. ‘It is also broader than that – the ICB does not know the solutions affecting everybody in the community. It is really important that communities feel empowered to create solutions to complex problems, and the ICB has the resources and relationships to “do with” communities not “do to” communities.
‘We’re not the experts. We need to listen to community leaders and representatives to support them to find solutions and to feel empowered to enact those solutions,’ says Mr Hallahan.
‘The work with people experiencing homelessness is so valuable,’ says Ms Dileto. ‘And hopefully we’re changing homeless populations’ perceptions of healthcare professionals – that people feel less judged – as well as promoting good health.’
