Tackling TB in inclusion health groups: a toolkit for a multi-agency approach

Question 1

Foreword

Accepted Answer

This toolkit comes at a critical time in the elimination of tuberculosis (TB). The UK government is committed to the World Health Organization (WHO) elimination targets by 2035, as outlined in the TB action plan for England, 2021 to 2026, which sets out how our organisations and partners will work towards these targets from 2021 to 2026.

We know the burden of TB is not distributed equally. TB rates continue to remain stubbornly high in areas of deprivation and almost 15% of people with TB in England have at least one social risk factor (SRF) such as drug and alcohol dependence, homelessness, or contact with the Criminal Justice System (CJS). TB prevalence is increased in individuals who experience social exclusion and are subject to severe and multiple disadvantages, referred to as ‘inclusion health’ groups. Taking targeted action to tackle TB in these groups is essential for achieving elimination targets.

The NHS England (NHSE) national framework for action on inclusion health and the national TB action plan have outlined the need to focus on inclusion health groups (IHGs) and use system-wide approaches to address health inequalities. This toolkit provides local systems with support to lead the development, improvement, and delivery of services to tackle TB in IHGs using an integrated approach across IHGs and the TB pathway. It draws together the best available evidence and showcases best practice and learning from across the country, demonstrating the power of using outreach, seeking to meet people where they live and using accessible communication.

Making every contact count by offering integrated screening and health checks, and addressing the barriers to service engagement for these groups is an essential part of our work, as is the importance of partnerships and building TB leadership across agencies to facilitate effective strategic working.

This toolkit is the culmination of strong partnership working and demonstrates the innovation and commitment of local services to meet the needs of IHGs. It demonstrates that we can have more impact when we work collaboratively and across the system with NHSE, UKHSA, local councils and the voluntary and community sector all having a role to play. By doing this, we are optimistic we can make progress to reduce avoidable inequalities, improve health outcomes and achieve TB elimination.

Professor Susan Hopkins, Chief Medical Advisor, UKHSA

Professor Bola Owolabi Director, National Healthcare Inequalities Improvement Programme, NHSE

Question 2

Executive summary

Accepted Answer

This guidance is a complete refresh of Tackling TB in under-served populations; a resource for TB control boards and partners resource (published 2017, revised 2019).

Since the last version of the toolkit, the term ‘inclusion health’ has become much more widely used across the health sector to describe groups previously referred to as ‘under-served’. IHGs describe groups of people, who although diverse, share experience of social exclusion and who typically experience multiple overlapping risk factors for poor health (such as, stigma, poor access to services and very high levels of disease).

Many changes have occurred in recent years that have had profound impacts on the health of the nation. The COVID-19 pandemic resulted in the disruption of local TB services and partnerships, while post-pandemic recovery has put considerable pressures on health services. The 2023 annual report on the incidence and epidemiology of TB in England (looking to the end of 2021) highlighted that certain IHGs in England continue to be disproportionately affected by TB. Notification rates remained strongly associated with areas of deprivation, and while 15% of people with TB aged 15 years or over in England have one or more social risk factors or SRFs, (such as drug or alcohol dependence, homelessness, imprisonment, mental health problems or asylum seeker status), IHGs have amongst the highest rates of TB. They also have higher levels of more infectious pulmonary TB, higher risk of transmission, higher risk of not completing treatment, drug resistance, coinfection with bloodborne viruses (BBVs), such as hepatitis B and C, and death.

These avoidable inequalities in outcomes will persist, and it will not be possible to meet our WHO TB elimination targets unless we improve TB control in IHGs, as highlighted in the TB action plan for England. Collaborative action with multiple partners, is needed to overcome the complex barriers to integrated and accessible care, and to address the needs of IHGs, whilst planning and commissioning of responsive services requires enhanced use of available data, development of data resources and engagement with IHGs.

The aim of this toolkit is to give the opportunity for people who develop, support and deliver services for IHGs to reinvigorate local partnerships, and revisit how to better support these groups using best practice, recommendations and shared learning, for the overall aims of improving health outcomes for IHGs and TB elimination.

The toolkit discusses the shared and distinct challenges experienced by IHGs which act as barriers to care, the latest evidence on treatment of TB in IHGs, and new analysis of TB rates and outcomes in IHGs. This is followed by recommendations to address these barriers, exemplars of good practice, and tools and resources for services to draw upon and adapt locally. These are presented under 3 themes:

theme 1: providing accessible integrated care for IHGs
theme 2: building inclusive partnerships
theme 3: use of inclusion health data to support service design and commissioning

The full list of the ‘exemplars’ and ‘tools and resources’ have also been collated into a directories with contact details so users can search through them easily and contact project or service leads for further information.

Our recommendations are based around the following key principles.

Enhance engagement in screening and prevention

This can be achieved by:

using outreach models
targeting screening and programmes to local need
offering one-step TB screening approaches
integrating multi-pathogen and non-communicable disease screening along with access to other infection prevention programs

Enhance communication, health literacy and awareness on TB and IHGs

This can be achieved by:

increasing awareness to staff and service users of IHGs’ rights to register and access healthcare, and of TB as a disease
addressing stigma and misinformation concerning TB to IHGs
using communication methods that support different literacy levels and are distributed in a wide range of user settings and formats
providing staff with training on IHGs and local TB pathways
ensuring effective communication and handover methods for individuals likely to relocate or be transferred

Enhance early diagnosis and treatment completion in IHGs use

This can be achieved by:

using Video Observed Therapy (VOT) and Directly Observed Therapy (DOT) where possible
shorter treatment regimens
settings-based contact tracing
peer support workers or people with lived experience to support engagement
named leads and multidisciplinary teams (MDTs) for complex patients
integrate health and social services to provide person-centred holistic care with access to services as needed in IHG and healthcare settings
using incentives and enablers to support individuals’ engagement to treatment completion

Build inclusive partnerships

This can be achieved by:

building TB and IHGs into local strategic and business plans with clearly defined roles and responsibilities
promoting leadership TB and inclusion health at all levels across agencies maintain regional strategic partnership forums for TB control
creating joint fast-track referral pathways and funding arrangements across partner agencies
conducting local service mapping of organisations that work with IHGs to build relationships and support mutual goals

Enhance use of inclusion health data

This can be achieved by:

reviewing local epidemiological data and use up-to-date health needs assessments to identify local IHGs and help plan programmes of work
involving people with lived experience in service design and commissioning
completing surveillance questionnaires accurately as possible
enabling local collaborative data sharing agreements to help enhance services and continuity of care
using cost-effectiveness data to demonstrate value of TB and latent TB infection (LTBI) services
national teams working together to develop and enhance data outputs used for programmes of work

Question 3

Introduction

Accepted Answer

Defining inclusion health groups

While the previous toolkit originally referred to the following groups of people as ‘under-served populations’, since then the term ‘inclusion health’ has become more widely used across the health sector. We have therefore adopted this terminology to enhance opportunities for partnership working, and support consistency across health, social and community services.

Inclusion health is an umbrella term used to describe people who are socially excluded, and typically experience multiple overlapping risk factors for poor health (such as stigma, discrimination, poverty, violence and complex trauma). People in IHGs tend to have poor experiences of healthcare services due to multiple barriers often related to service design, and being missed from healthcare data collection.

Health outcomes experienced by IHGs are often disproportionately worse than the general population and include:

lower average age of death
greater likelihood of other comorbidities and drug and alcohol dependence
higher risk of emergency admissions, and longer inpatient stays
higher risk of infections including TB and BBV

Using this toolkit

This toolkit is informed by:

a national consultation with TB nurses and regional TB leads and programme managers on their experience of working with IHGs
a scoping review of international evidence for effective interventions to improve TB treatment completion in IHGs
a literature search of the impact of the COVID-19 pandemic on TB control in IHGs
existing recommended practice and exemplars of innovative and effective work from across the country

The IHG populations considered for this toolkit include, but are not limited to:

people experiencing homelessness
vulnerable migrants (including asylum seekers, refugees and undocumented migrants)
people in contact with the CJS
sex workers
Gypsy, Roma, Traveller (GRT) groups
victims of modern slavery
people with drug and alcohol dependence

People with mental health needs have not been put into a separate group, as it is an important consideration of all IHGs.

The toolkit is presented in 2 parts. The first part covers useful background information, discussing new analysis of TB rates and outcomes in IHGs, the shared and distinct challenges experienced by IHGs which act as barriers to care, and the latest evidence on treatment of TB in IHGs. This is followed by the second part, which looks at the practical actions services can take. While the previous toolkit was divided by IHGs and service, the toolkit is now structured around themes to provide a more integrated approach. These are:

theme 1: providing accessible integrated care for IHGs
theme 2: building inclusive partnerships
theme 3: use of inclusion health data to support service design and commissioning

The aim of this toolkit is to:

provide an updated resource that supports the development, improvement and delivery of services to tackle TB in IHGs
provide in one place links to recommendations, current guidance, tools and resources and exemplars of good practice
align with and support the TB action plan for England, 2021 to 2026
support UK government’s commitment to WHO 2035 TB elimination targets

The audience of the toolkit includes people who want to develop, support or deliver services for IHGs and those affected by TB.

Each theme contains exemplars of good practice that have been collated from services across the country, and tools and resources (worked examples of useful documentation, links, information leaflets and templates), which users can draw on and adapt locally.

The full lists of the exemplars and tools and resources have also been collated into a directory with contact details so users can search through them easily and contact project or service leads for further information.

Reflecting the holistic approach many services have taken, the exemplars, tools and resources frequently cross themes, resulting in relevant learning on all themes throughout the toolkit. We recommend looking through the resource to see the full breadth of practice and innovation across the country, and to receive the full benefit of the recommendations, shared learning, and best practice showcased here.

Settings relevant to these populations include the following.

Migrant health settings, such as:

immigration removal centres (IRCs)
asylum accommodation settings including initial accommodation centres, contingency hotels and large accommodation sites

Secure settings, such as:

adult prisons (both public and privately managed)
Approved Premises
IRCs
young offender institution (YOI) units for those aged 18 years and over

Other shelter, refuge and accommodation settings, such as:

homeless accommodation settings (for example, hostels and night shelters)
domestic abuse refuges
houses of multiple occupation (HMO)
GRT sites

Further relevant settings include respite rooms (short stay supported accommodation for those at risk of and victims of domestic abuse, physical and/or sexual assault, exploitation and sex work), drug and alcohol services, peer support groups, community groups, outpatient clinics, local authority services and voluntary sector services.

The current state of TB in IHGs in the UK

In 2023, the annual report on the incidence and epidemiology of TB in England up to the end of 2021 was published. Although it highlighted that England remains below the WHO threshold for a low incidence country (7.8 per 100,000, 4,425 notifications in 2021), the rate of decline is slowing. This means that England is not on target to reach its commitment to WHO’s End TB strategy, which aims to reduce TB incidence by 90% by 2035.

The IHGs captured in the report (those experiencing drug or alcohol dependence, homelessness, imprisonment, mental health problems and asylum seeker status), continue to be the most disproportionately affected by high TB rates and poor health outcomes. Accordingly, it will not be possible to meet targets for TB elimination without improving TB prevention, treatment completion and stopping transmission in IHGs.

The TB report highlights SRFs, deprivation and risk of TB.

In England, TB notification rates are highest in people born outside of the UK, with the rate in non-UK born people at 37.6 per 100,000 compared to 2.1 per 100,000 in people born in the UK. Non-UK born people account for most TB notifications in England (76.4% in 2021) with 86% of TB notifications in non-UK born individuals occurring more than 2 years after UK entry, and 44% occurring 11 years or more after UK entry.

Amongst UK-born individuals, TB notification rates in England are higher in those recorded as belonging to non-white ethnic groups, with the highest notification rates in the black-other ethnic group (19.5 per 100,000 compared with 1.4 per 100,000 for the white ethnic group). For non-UK born individuals, notification rates are highest in those recorded as being from the Indian ethnic group (99.8 per 100,000), and lowest in the white ethnic group (8.9 per 100,000).

Pulmonary TB (which poses the highest transmission risk) is much more common in UK born people with TB, comprising 69.9% (656 notifications) of TB notifications in this group, compared with 47.5% (1,581 notifications) in non-UK born individuals.

TB notification rates are strongly associated with deprivation (using the Index of Multiple Deprivation) with 13.1 per 100,000 in the 10% most deprived lower super output areas (LSOA), compared with 2.1 per 100,000 in the 10% least deprived areas.

Certain social characteristics are associated with an increased risk of TB and/or poor treatment outcomes. These include drug and alcohol misuse, homelessness, imprisonment, mental health needs and asylum seeker status (also known as SRFs) as recorded in the National Tuberculosis Surveillance System (NTBS). Almost 15% of people with TB, aged 15 years or over, in England had one or more SRFs and this proportion is unchanged over the last 4 years. The proportion of people with TB and one or more SRFs were highest in the North East (24%,18 notifications), followed by London (17.6%, 270 notifications), and the West Midlands (17.4%, 95 notifications).

When looking at country of birth, the proportion of people with TB and one or more SRFs was higher in people born in the UK (23%) compared with those born outside the UK (12%). People born outside of the UK have a lower prevalence of all SRFs recorded in NTBS apart from homelessness. Drug misuse and prison are much less common SRFs in the non-UK-born population. Drug misuse was the most common SRF recorded in any of these subgroups at 15.9% in the UK-born population, increasing to 24.9% when limited to male, UK-born and aged 15 to 44 years.

The prevalence of SRFs in people notified with TB varies by ethnicity in the UK-born population and by country of birth in the non-UK born population. In the UK-born population, black Caribbean people had the highest proportion of people with at least one SRF at nearly 40% with drug misuse being the most common recorded at 27%, followed by history of imprisonment at 19%. In contrast, in UK-born people with white ethnicity, alcohol misuse was the most common SRF at nearly 11%. In the non-UK born population people born in Eritrea and Somalia had the highest prevalence of people with at least one SRF at 42%, most of which was from being an asylum seeker and/or homelessness.

Estimating TB rates in IHGs and other new analyses

New analyses were undertaken to provide estimates of TB rates in IHGs, and to estimate the association between SRFs and clinical outcomes. Analyses are presented here based on 2021 annual data. Going forward, these analyses will be updated and published annually as part of the annual TB report. A supplementary slide deck, methods and data set will be published in full each year along with the annual TB report.

There are challenges in calculating rates of TB in IHGs due to uncertainties in population denominators, but analyses conducted for this toolkit (refer to supplementary slide deck and methodology supplement) estimated rates in 2021 to be:

28.1 per 100,000 in prisoners (95% confidence interval (CI): 17.6 to 42.5)
30.2 per 100,000 in people experiencing homelessness (95% CI: 18.3 to 30.2)
9.2 per 100,000 in people using opiates, cocaine or amphetamines (95% CI: 7.4 to 11.3)
50.4 per 100,000 in asylum seekers entering the UK since 2018 (95% CI: 40.1 to 61.7)

There was no clear denominator for alcohol dependence or for mental health problems likely to affect an individual’s ability to take treatment, preventing meaningful estimation of disease rates in these groups.

Overall, these rates are considerably higher when compared to the UK born community (2.1 per 100,000) or the overall TB notification rate in England (7.8 per 100,000).

The supplementary slide deck and associated supplementary data sets report the associations between SRFs, clinical characteristics and TB treatment outcomes. In summary, between 2019 and 2021, those with at least one SRF and adjusted for effects of age and sex are significantly more likely than those with no SRFs to:

have pulmonary TB (adjusted risk ratio 1.4 (95% CI: 1.4 to 1.5) in people with at least one SRF (meaning that people with an SRF are 1.4 times more likely to have pulmonary TB compared with people with no SRFs, after accounting for effects of differences in age and sex in people with and without an SRF), and 1.5 (95% CI: 1.4 to 1.6) in those with multiple SRFs compared with people with no SRFs)
to be part of a cluster of TB cases indicating likely transmission (adjusted risk ratio 1.8 (95% CI: 1.7 to 2.0) in people with at least one SRF, and 2.0 (95% CI: 1.9 to 2.1) in those with multiple SRFs)
to have drug resistant or multi-drug resistant TB (adjusted risk ratio 1.6 (95% CI: 1.2 to 2.2) in those with at least one SRF)
to have died during before starting or during their planned TB treatment duration (adjusted risk ratio 1.7 (95% CI: 1.5 to 2.0) in those with at least one SRF, and 2.2 (95% CI: 1.7 to 2.8) in those with multiple SRFs)
to be coinfected with a hepatitis B or hepatitis C (adjusted risk ratio 2.9 (95% CI: 2.4 to 3.6) in those with at least one SRF, and 3.7 (95% CI: 2.9 to 4.6) in those with multiple SRFs)
and less likely to complete treatment within 12 months (adjusted risk ratio 0.9 (95% CI: 0.8 to 0.9) in those with at least one SRF, and 0.9 (95% CI: 0.8 to 0.9) in those with multiple SRFs)

Results for individual SRF groups need to be treated with caution due to missing data and small numbers for some (particularly asylum status and mental health needs) but Table 1 summarises these associations.

Social risk factor	Pulmonary disease	MDR-TB	Clustered	Co- infection BBV	Treatment completion	Death
Current alcohol misuse	Increased risk	Increased risk	Increased risk	Increased risk	Decreased risk	Increased risk
History of drug misuse	Increased risk	No association	Increased risk	Increased risk	Decreased risk	Increased risk
History of homelessness	Increased risk	No association	Increased risk	Increased risk	Decreased risk	Increased risk
History of imprisonment	Increased risk	No association	Increased risk	Increased risk	Decreased risk	Increased risk
Current asylum seeker	No association	Increased risk	Decreased risk	No association	No association	No association
Mental health needs	Increased risk	No association	Increased risk	Increased risk	Decreased risk	Increased risk

Notes

Increased risk indicates a statistically significant increased risk of an adverse outcome. Decreased risk indicates a significant protective effect.
MDR-TB (Multi-drug resistant TB, defined as resistant to at least rifampicin and isoniazid as per WHO guidelines).
Clustered: notifications are clustered if in a genomic cluster with more than one other person and is limited to notifications with culture confirmation for whole genome sequencing (61% of notifications).
Co-infection BBV (co-infected with a bloodborne virus) limited to hepatitis. HIV co-infection data is not available.
SRFs were missing for alcohol misuse 6%, drug misuse 6%, homelessness 6%, imprisonment 9%, asylum seeker 63%, mental health 56% of notifications.
No notifications have missing data for pulmonary disease, MDR-TB, treatment completion and death as last recorded TB treatment outcomes and clustered.

In 2021, 76.8% of those with SRFs completed treatment within 12 months, significantly less than those with no SRF (85.3%). Treatment completion rates in those with and without an SRF have not improved in the last 6 years.

Inclusion health TB indicators

In July 2021, UKHSA and NHSE jointly launched the TB action plan for England, 2021 to 2026 to improve the prevention, detection and control of TB in England. Priority 2 of the action plan focuses on TB prevention among the highest risk groups, including new entrant migrants and IHGs. High-level monitoring indicators were defined as part of this to help measure progress. The indicators that specifically refer to IHGs are listed below and published as part of the annual TB report. Indicator 15 is part of the interactive data source, Fingertips. Indicators 2, 5 and 6 will also be part of Fingertips from 2024 onwards.

Indicator 2

Reduce the proportion of TB cases in those born outside of the UK in whom TB occurs within 5 years of entry (action plan 2.1)

Target: 5% reduction per year (2017 to 2019 baseline)

Compared to the 2017 to 2019 baseline of 29.1%; in 2021, the proportion of TB within the non-UK born population, notified within 5 years of UK rose to 32.3% (target: 5% reduction per year). Methodology and further analysis of action plan indicator 2 is available.

Indicator 5

Proportion of new entrant migrants who take up the offer of a LTBI test (action plan 2.2).

Target: 15% increase per year (2019 to 2020 baseline)

In 2021, the proportion of new entrant migrants from high incidence countries who took up the offer of a LTBI test was 9.4% (target of 25). Compared to 2020 this represents a 33.2% increase.

Indicator 6

Proportion of new entrant migrants diagnosed with LTBI who complete treatment (action plan 2.2)

Target: 20% increase per year (2019 to 2020 baseline)

The proportion of new entrant migrants diagnosed with LTBI who complete treatment is incompletely recorded, but was 25.6% in 2021, the highest figure for 5 years. The reasons for the low percentages for indicators 5 and 6 need to be further investigated but are likely to include the impact of the COVID-19 pandemic, lack of data and reduced uptake of services. Methodology and further analysis of action plan indicator 6 is available.

Indicator 15

Proportion of drug sensitive TB cases with at least one SRF who completed treatment within 12 months (action plan 3.5)

Target: 5% increase per year (2020 to 2021)

This proportion has not significantly changed over the last 6 years (target: 5% increase per year), and is significantly lower in those with a SRF compared with those without (76.8% versus 85.3%, p-value less than 0.001). Methodology and further analysis of action plan indicator 15 is available.

The impact of the COVID-19 pandemic on TB services

The following was taken from Tuberculosis in Children and the Impact of COVID:

Tuberculosis is a disease characterised by inequity. It is most prevalent in poor and vulnerable communities, and then directly contributes to the further impoverishment and increased vulnerability of those same populations. The COVID-19 pandemic has exacerbated this inequity.

The impact of the COVID-19 pandemic on TB services for IHGs was explored through an literature search of published literature and a consultation exercise with TB services.

Insights from published evidence

As part of this toolkit, the UKHSA Knowledge and Library Services conducted a literature search in March 2023, to find evidence to answer the question ‘What impact did the COVID-19 pandemic have on TB services, particularly for vulnerable groups?’ in low burden countries, particularly the UK (the term ‘vulnerable groups’ was used to capture the widest base of existing literature).

Findings

TB services globally have been adversely affected by the COVID-19 pandemic due to the redeployment of specialist healthcare personnel, disruption to the delivery of preventative screening and vaccination programmes, drug supply issues, and a reduction contact tracing and diagnostic capacity. (15, 16, 22, 23)

In the UK the most affected elements of provision were face-to-face appointments and latent screening of non-contacts (15). Challenges to service delivery were due to loss of clinic space, loss of clinical capacity to see patients and loss of staff generally. (15)

The pandemic affected the ability to embed pilot projects, de-prioritised services, distracted funding and interrupted TB Control Boards’ (TCB) ability to co-ordinate efforts to eliminate TB in the UK. (24)

Enforced adaptation of delivery has led to practices that many providers are keen to retain such as remote working and the increased use of telehealth. (15)

The barriers to service delivery for vulnerable groups include lack of resource to identify and follow-up those who by definition are hard-to-reach, complex decision making on treatment options and ‘a lack of funding, linked to an absence of local or national commissioning for latent TB infection (LTBI) management’. (24)

Providing services to those groups who are hard-to-reach requires a holistic patient centred approach facilitated by interagency collaboration and the removal of barriers to access. (17, 33, 34, 36)

Finally, in order to prevent health inequalities from widening further during pandemics vulnerable groups need to be considered in the preparation and planning for such events. (36)

Further information on the literature search can be found in the supplementary material.

Insights from stakeholder consultation

In January 2023, 2 consultation exercises with TB nurses and regional TB leads and programme managers were conducted representing 8 out of 9 UKHSA regions, exploring the impact of the pandemic on their services.

Main findings

People experiencing homelessness and vulnerable migrants were viewed as the IHGs most impacted by the pandemic.

TB service delivery was impacted negatively by:

diversion of TB resources in acute trusts to provide acute respiratory care (level of impact not known)
increase in complexity of patients with SRFs
worsened patient access to primary and secondary healthcare
low staffing levels due to redeployment and staff sickness
rapid expansion of accommodation for people sleeping rough and migrants without wider social or healthcare support (such as GP registration, LTBI screening)
stalled proactive work
pathways no longer working and needing review, particularly in migrant health and screening

Further information on the consultation can be found in the supplementary material.

Current approaches and standards for addressing health equalities and meeting the needs of IHGs

NHSE, including integrated care boards (ICBs), local government and UKHSA all have statutory obligations to address health inequalities. You can refer to:

This toolkit complements a range of broader strategies and policies for addressing health equity and improving outcomes for IHGs.

Core20PLUS5

Core20PLUS5 is a national NHSE approach to support the reduction of health inequalities in the most socially deprived areas, in IHGs and other locally identified populations recognised as experiencing poorer than average healthcare access, experience and/or outcomes.

NHS Inclusion Health Framework

The NHS Inclusion Health Framework outlines key principles to underpin the design and delivery of services for people living in IHGs. Its key principles for action are:

commit to action on inclusion health
understand the characteristics and needs of people in IHGs
develop the workforce for inclusion health
deliver integrated and accessible services for inclusion health
demonstrate impact and improvement through action on inclusion health

It includes exemplars of good practice for working with IHGs, and also outlines the roles and responsibilities of different organisations in relation to inclusion health.

Health Education England

Health Education England (now NHSE) produced a report on current healthcare training provision on inclusion health, with a mapping of key free and low-cost educational resources on IHGs available for healthcare staff.

All Our Health approach

The Office for Health Improvement and Disparities (OHID) have included IHGs as part of its All Our Health approach, and the development of its migrant health guides.

UKHSA 3-year strategic plan

The UKHSA 3-year strategic plan sets out an ambition for achieving more equitable outcomes across all UKHSA activities. To enable this a strategic, multi-year approach to health equity has been developed. UKHSA has adopted the CORE20PLUS framework to define the populations and communities that we routinely consider through our work and to enable collaboration with partners across national and regional levels.

Challenges facing IHGs that impact on TB

Shared challenges

Although IHGs are diverse, these are highly overlapping populations who share common challenges to accessing high-quality care that require similar approaches to overcome.

Challenges that directly impact access to services and coordination of treatment in IHGs (1, 2, 3, 4) include the following.

Individual

Challenges that may be experienced at an individual level include:

stigma and discrimination, including previous poor experiences of attending services discouraging further attendance
language barriers and/or limited literacy, affecting understanding of TB screening and treatment
limited access to digital technologies such as smartphones and internet connectivity, inhibiting communication with services
multiple complex health problems of physical health, mental health and addiction (also known as tri-morbidity) creating competing priorities for IHGs, and complex coordination of follow-up and services
competing priorities to follow-up or accessing healthcare services such as meeting basic survival and/or addiction related needs

Community

Challenges that may be experienced at a community level include:

lack of a fixed address and risk of displacement to other accommodation, areas of the country, abroad or to detained settings, inhibiting continuity of care and treatment adherence (for example, affecting provision of DOT, or VOT and virtual appointments if they do not have a reliable internet connection)
poverty and/or destitution, and lack of access to welfare payments, local council or housing association accommodation or social care services impacting treatment completion, for example making travel to healthcare appointments unaffordable

System

Challenges that may be experienced at a system level include:

barriers to registering with primary healthcare services
difficulty accessing and navigating inflexible and complex healthcare systems and institutional factors (such as opening hours, travel, location)
fears of entering or re-entering the CJS, or being exposed to other sanctions such as deportation, leading to lack of trust in institutions and officials
being in coercive situations which makes access to care difficult, such as for victims of modern slavery, some sex workers and victims of domestic abuse

Not addressing these barriers increases the likelihood of failure to complete treatment, risks of developing drug resistance, prolonged infectivity, onward transmission to others, and poor health outcomes for the individual which may otherwise be preventable.

Specific challenges for each of the IHGs

Despite the shared challenges, for IHGs some of those challenges above will be more significant than for others, and each IHG faces its own unique challenges to accessing healthcare. Whilst local services are best placed to understand the challenges experienced by their local IHG populations, some of the more widely understood and evidence-supported challenges are listed here.

People experiencing homelessness

Homelessness is a broad concept ranging from rough sleeping to living in hostels, squatting, sofa surfing or staying in other unsuitable or temporary accommodation. The risk of TB and associated challenges is likely to vary substantially according to the type of homelessness. Lack of fixed address also poses significant barriers to accessing healthcare and continuity of care, while those experiencing homelessness are more likely to be at higher risk of co-morbidities, and have complex needs including alcohol and/or drug dependence.

Particular challenges for people experiencing homelessness (2, 5, 6, 7) include:

masking of TB symptoms due to lifestyle factors such as smoking, alcohol and drug use, which can lead to similar symptoms
difficulty registering with primary care without a fixed address
difficulty maintaining continuity of care and adhering to treatment due to costs of travelling to services, lack of access to communication devices, and competing priorities of meeting basic survival needs
vulnerability to punitive measures and their effects, such as benefit sanctions, anti-social behaviour orders, arrest for drug offences and survival shoplifting, which can lead to entry to the justice system
increased risk in young people who are experiencing homelessness of exploitation, abuse, trafficking, and involvement in gang and/or criminal activity or sex work
higher levels of mental health needs, both as a cause and consequence of the experience of homelessness, self-harm, and drug and alcohol use

Vulnerable migrants

There is a wide spectrum of migration to the UK with the majority being through planned work visas, family resettlement visas, or student visas. These groups generally have good health outcomes in comparison to the UK population, although depending on the country of origin, may have higher levels of TB. However, after arrival some migrants may be economically disadvantaged, live in over-crowded conditions, and live and meet socially with other people from at-risk groups, which puts them at further risk of transmission.

There are also vulnerable migrant groups, such as:

asylum seekers
refugees
victims of modern slavery and trafficking
undocumented migrants

These groups face numerous challenges and are particularly at risk of poor health outcomes. They are also less visible to local services, similar to some economic migrants, such as seasonal workers.

Particular challenges for vulnerable migrants (8, 9) include:

limited awareness of NHS entitlements and of how to access healthcare
barriers to registering with primary healthcare services (for example, incorrectly being required to provide proof of address, ID or legal immigration status before registration)
limited entitlements to secondary care
language, literacy, and cultural barriers resulting in a lack of awareness of TB, and difficulty accessing information and navigating services
limited availability of interpreting and translation services impacting efforts to deliver services and contact tracing
lack of referral pathways for care and support for those with no recourse to public funds (NRPFs)
fears that a positive diagnosis may affect right to remain in the UK, and fears of entering or re-entering the CJS, or being deported (particularly for undocumented migrants, or victims of modern slavery and trafficking)
legal restrictions preventing paid employment, leading to financial difficulties, exploitation in the informal labour market and making travel to healthcare unaffordable
dispersal to other areas of the country and sites at short notice or deportation, which interrupts care, with associated difficulties of sharing care information onward
high levels of societal stigma
poor access to digital technology and internet resources through which services are delivered
exposure to illness during often prolonged journeys to the UK in poor conditions exposure to illness in overcrowded asylum seeker and refugee accommodation, with high risk of onward infection transmission
accommodation sites in remote locations making healthcare access difficult
new accommodation sites set up at short notice, making planning of service delivery difficult
accommodation in areas with and low levels of resource for wider TB services and no commissioned LTBI services
additional mental health needs, linked to both their pre-migration experiences (in particular exposure to conflict trauma), and post-migration experiences (such as separation from family, difficulties with asylum procedures, detention, unemployment and inadequate housing)

Find guidance on NHS entitlements for migrants on GOV.UK, and further detail on the TB health needs of migrants within OHID’s migrant health guide.

People in contact with the CJS

The definition of people in contact with the CJS includes those who are aged 18 years and over in:

prisons (both public and privately managed)
IRCs
YOIs
the community under supervision of probation services or in contact with the police

Particular challenges for people in contact with the CJS (10) include:

not being registered with primary care services prior to entry into the justice system, not having an NHS number, or difficulty identifying previous records due to different names being given
pressures on reception screening due to high turnover of residents
difficulty transferring information between health services on admission and release
difficulty maintaining continuity of care due to transfers between secure settings; imprisonment in areas far from their original address or area; and unpredictable release dates based on parole board and court decisions
difficulty attending secondary care due to limited availability of prison escorts, and lack of ‘in-reach’ on-site secondary services
high levels of stigma and lack of privacy when attending secondary care with prison escorts and restraints
enforced lack of access to digital technologies such as smartphones or the internet, providing a barrier to virtual/remote forms of healthcare access
high levels of homelessness and unavailability of contact details on release to help maintain contact and continuity of care
limited visibility to services while on probation or in Approved Premises (supervised residential placements for prisoners who are released to support rehabilitation and resettlement in the community)
financial hardship on release, as well as competing priorities such as finding accommodation and attending probation
lack of trust in institutions and officials

The nature of secure settings also poses particular risk for infectious diseases, such as:

regular movement of people into and out of the settings
shared and crowded accommodation and facilities, including shared cells
old and poorly ventilated estates with limited onsite healthcare services

Sex workers

Sex workers are adults who provide sexual or erotic acts or sexual intimacy in exchange for payment or goods, either regularly or occasionally. Sex work encompasses a wide range of activities and may take place at a wide range of locations and settings including but not limited to street or outdoor sex work, bars and clubs, brothels, escort agencies, massage parlours and saunas, the pornography industry and on telephone and internet platforms.

Particular challenges for sex workers include:

exposure to risks of infectious diseases during the course of their work
exposure to risks to physical safety during the course of their work
fear of entering the CJS, or of deportation
associated SRFs such as alcohol or drug dependence
some sex workers and trafficked people may be victims of highly coercive control further limiting access to care

GRT groups

GRT is a commonly used catch-all term that includes people from a variety of groups, all of whom were, or are, nomadic. These include:

Romany (English and Welsh) Gypsies (the majority group in England and Wales)
Scottish Gypsies or Travellers
Travellers of Irish heritage (Irish Travellers)
Roma
fairground and show people
circus people
New Travellers
Bargee (watercraft or canal boat) Travellers

Even after controlling for socio-economic status, Gypsies and Travellers, including those in housing, have poorer health outcomes and more self-reported symptoms of ill-health than both economically disadvantaged white UK residents and UK resident English-speaking ethnic minority groups.

This group may live in nomadic or permanent settlements. Although all members of this group have a legal right to access health and social care services, the under-provision of official trailer sites in the country, legislation to criminalise use of unauthorised sites, and nomadic lifestyles contribute to the challenges they experience.

Particular challenges for GRT groups (2, 11) include:

low educational attainment, literacy, and limited employment opportunities
high levels of stigma within the community regarding infections
difficulty of healthcare staff visiting sites
difficulty maintaining continuity of care due to relocations
living conditions that result in exposure to health hazards, such as limited access to water, lack of sewage disposal, vulnerability to hot and cold weather events, overcrowding and rapid spread of infection

Victims of modern slavery

Modern slavery is defined as the recruitment, movement, harbouring or receiving of children or adults through the use of force, coercion, abuse of vulnerability, deception or other means for the purpose of exploitation.

Victims of modern slavery are not limited to those born outside the UK, in fact 25% of those referred through the National Referral Mechanism or Duty to Notify process in 2022 were of UK nationality, while people experiencing homelessness have been identified at particular risk of modern slavery.

Particular challenges for victims of modern slavery (12, 13) include:

coercive circumstances preventing access to healthcare
kept in poor living conditions
fears of entering the CJS, or being deported preventing engagement with services
exposure to additional health risks during travel for those moved across borders

The Local Government Association has produced guidance on supporting victims of modern slavery.

People with drug and alcohol dependence

Alcohol and/or drug dependence continues to be a prominent SRF in people diagnosed with TB, and associated with lower treatment completion, greater risk of transmission, drug-resistant disease, BBVs and death. This group also has high rates of experiencing homelessness, with the associated challenges.

Particular challenges for people with drug and alcohol dependence include:

masking of TB symptoms due to alcohol or substance use
fear of withdrawal inhibiting access to care
high levels of self discharge from hospital especially if addiction in not adequately managed in this setting
fear of entering the CJS, or of deportation
lack of necessary support to access healthcare appointments
likelihood of other physical and mental health morbidities (which with alcohol and drug dependence is termed tri-morbidity)

Latest evidence on improving treatment adherence and/or completion in IHGs

To address the barriers and challenges, a scoping review was commissioned from the University of Birmingham to summarise the recent evidence (since 2015) for interventions or approaches that can help improve treatment adherence and/or completion rates among IHGs in low incidence countries.

Summary of important findings in the scoping review

Treatment completion

Higher treatment completion rates were found consistently across all IHG studies with:

VOT compared with DOT (for active TB)
conditional cash transfer (where direct payments are made to individuals on certain conditions being met) compared with standard care (active TB)
tailored and enhanced approaches that included social, mental health and drug and/or alcohol use support (both active and latent TB)
shorter treatment regimens compared with longer treatment regimens (latent TB)
DOT compared with self-administered treatment (latent TB)
clinics that integrated TB services with primary care compared with standard care (latent TB)
refugee focused services compared with standard clinics (latent TB)
use of peers and/or people with lived experience as support workers

Qualitative studies looking at latent and active TB found that the short-term nature of a 3-month regimen of isoniazid and rifapentine with the routine of DOT (3HP/DOT) were helpful for adherence and facilitating other social support. Barriers to 3HP/DOT included the resource intensive nature, relocation of patients or instability of housing, and patients not feeling trusted or included in the decision making process, or feeling ‘trapped’ by DOT.

Screening engagement

For LTBI screening and treatment pathways, the type of test used (tuberculin skin test (TST) versus IGRA) does not appear to influence LTBI treatment completion rates, however, more people complete testing with a one-step screening approach, which could affect the overall number of people treated.

Qualitative findings on barriers and facilitators to treatment initiation and adherence

Qualitative studies looking at barriers and facilitators to initiating and treating latent or active TB, both from patients’ and health professionals’ perspectives, identified the following in addition to what has already been highlighted above.

Barriers include:

a lack of knowledge particularly around latent TB and the stigma associated with TB
lack of health care staff resources, staff training and fragmented care
high pill burden, side effects and duration of treatment
lack of trust in staff or institutions, and not being included in the decision making process
incompatibility of DOT with work or difficulties fitting a medication routine into daily life
lack of incentives
coping with withdrawal symptoms while in hospital (in people with substance dependence)
inability to safety store medications (in people experiencing homelessness)

Common facilitators include:

health education
face-to-face outreach
building trusted relationships between patients and health care staff
maintaining confidentiality (such as on immigration status)
collaborative working with other services or community organisations
DOT as a mechanism for other (social and practical) support and continuity of care
reminders such as phone alarms, charts or text messages
more stable lifestyle and medication routines
livelihood support and reimbursement of costs
training for healthcare workers

Results from consultation exercise with TB nurses and regional TB leads and programme managers

In January 2023, 2 consultation exercises with TB nurses and regional TB leads and programme managers were conducted representing 8 out of 9 UKHSA regions, exploring the experiences, barriers and priorities for more effective working with people from IHGs.

In addition to the challenges already highlighted above, the following were identified by those consulted.

The main challenges to offering LTBI testing in IHGs were:

poor uptake of testing when offered
lack of awareness and/or understanding of LTBI among the target populations
regional commissioning disparities, with some areas not having commissioned LTBI testing and treatment services

The main challenges to treating both active and LTBI in IHGs were:

insecure or no accommodation
competing needs such as alcohol or drug dependence
side-effects of treatment
financial situation
lack of continuity of care

While certain IHGs such as people experiencing homelessness, vulnerable migrants and people in contact with the CJS were prioritised in business plans, others such as sex workers and GRT groups were not.

Wider system and commissioning challenges to meeting the health and social care needs of IHGs were:

commissioning:
- challenges engaging ICBs
- mismatch of number of local authorities and ICBs within a region creating complex commissioning and delivery arrangements
- difficulty commissioning TB services in areas of low incidence
governance:
- TB control boards not yet being reformed since the pandemic
- lack of understanding of roles and responsibilities
- disease-focused structures rather than population-focused making integration more difficult
resources:
- insufficient funding allocation
- staffing recruitment and retention in both NHS and UKHSA
- staff sickness and burn-out
- insufficient time or appropriate skill mix to deliver appropriate solutions to complex patients or respond to outbreaks
lack of funding to address social support needs and barriers to engagement with services

Other important themes being captured in cohort review were:

late presentation or delayed diagnosis
issues with treatment adherence
the cost of living crisis (including high transport costs and food costs)

Initiatives to support IHGs

The survey captured a variety of whole population and targeted initiatives for supporting IHGs across different regions.

Whole population initiatives include:

supporting recovery of local TB networks
TB mortality review of vulnerable populations
establishing a forum for ICB Commissioners to standardise systems and explore gaps in provision
significant increase to pan-regional VOT as well as local VOT initiatives

Targeted initiatives include:

linking of TB services into the local system migrant health response
sharing of NRPF toolkit for homeless TB patients with stakeholders
planned health needs assessments
NRPF accommodation and pathway for those needing enhanced social care support
in-depth quality improvement project reviewing all cases in high-risk settings and those aged under 18 years
supporting local development of TB risk-sharing arrangements for people experiencing homelessness who have TB and are NRPF

Question 4

Toolkit recommendations

Accepted Answer

These recommendations, based on best available evidence, may have implications for commissioners. UKHSA acknowledges that the commissioning of services for IHGs (as recommended by the National framework for NHS action on inclusion health) is determined locally and is subject to local resourcing constraints and prioritisation.

Enhance engagement in screening and prevention programmes

Enhance access using outreach models in all IHG settings (accommodation and service settings, community groups and events, with equivalent in-reach services in the case of the secure estate) through outreach teams, mobile units, and community health and peer support workers.

Target screening and programmes according to local IHG need, as indicated by local data.

Offer one-step TB screening approaches for IHGs where possible, for example, interferon-gamma release assay (IGRA) in outreach settings or mobile x-ray screening, with appropriate follow-up.

Offer integrated multi-pathogen and non-communicable disease screening. For example, BBV screening, sexual health checks, fibroscans, vaccinations, non-communicable conditions health checks in outreach and healthcare settings including relevant outpatient clinics (such as sexual health and BBV clinics).

Provide access to other infection prevention programs through outreach models (such as vaccination programmes, condom distribution, referral to syringe and needle prescription programmes) and in healthcare settings.

Enhance communication, health literacy and awareness

Increase awareness both in users and staff in providers and settings (for example primary and secondary care, accommodation settings, referral pathways and community groups) of IHGs’ rights to register with GP services and access NHS care.

Information communication and resources should support different literacy levels by using simple language, easy read formats, infographics, pictures, video, peer advocates/support workers, and be multi-lingual where possible.

Distribute in a wide range of user settings and formats, targeted at IHG user journey, for example in accommodation settings, referral settings, community group, and social networking and messaging apps.

Raise awareness of TB, and address stigma and misinformation using outreach and engagement strategies (for example, emphasising that treatment is free, and immigration status does not impact on TB care and treatment) to build trust, enable engagement and timely diagnosis.

Provide all staff and services who work with IHGs access to training, to increase their own awareness of IHGs, appropriate infection prevention and control (IPC) measures, the local TB Pathways and the importance of trauma-informed approach and motivational interviewing to help screening participation and treatment completion.

Ensure effective communication pathways and handover methods, to ensure continuity of care for individuals without fixed address and likely to be relocated, dispersed or transferred (for example, using summary letters or active follow-up)

Enhance early diagnosis and treatment completion in IHGs

Use VOT and DOT wherever possible (ensuring shared decision-making with the patient), and making use of safe, appropriate community settings, for example integrated TB /primary care clinics, IHG accommodation, pharmacies and telehealth/patient-preferred apps (if compliant with information governance requirements).

Treatment regimens with shorter durations (when available) should be considered to help support treatment completion.

Consider contact tracing and testing across higher-risk small groups and settings, rather than just identified close contacts and enhance with translation services

Use peer support workers and people with lived experience to help individualise care plans, address specific needs, support engagement with navigating services, and potentially translate and provide cultural literacy for the groups, alongside translation services.

Use named leads and MDTs to create care plans for patients with complex risk factors to help coordinate treatment, manage competing priorities and reduce further potential harms, for example, making every effort to ensure individuals do not return to homelessness after treatment finishes.

Integrate health and social services to provide person-centred holistic care to address the wider health and social needs of the individual and take into account the competing priorities they face. For example, providing access to a range of health (such as substance misuse services, psychological support) and non-health services (such as housing, access to benefits and employment, language classes) in IHG and healthcare settings to make every contact count.

Use incentives and enablers to facilitate engagement throughout the pathway and include as part of commissioning arrangements for providers to support treatment completion. Examples include support for travel cost and time, access to accommodation, food, communication methods (for example, provision of a mobile phone for VOT or follow-up), escorts to appointments as necessary, and interventions to help with self-isolation.

Build inclusive partnerships

Build TB and IHGs into local strategic and business plans across agencies with clearly defined roles and responsibilities. Promote leadership in TB and inclusion health at all levels (such as elected members, local council public health, health and wellbeing and health protection boards, NHS ICBs, allied NHS and primary care teams) to facilitate its prioritisation, multi-agency working and to address organisational barriers for IHGs.

Maintain regional strategic partnership forums for TB control as an aim of the TB action plan (for example, in a TB control board or equivalent). These forums should be formally convened with clear roles and responsibilities for members who have experience of leading, commissioning, managing, or supporting people with TB. Membership should be determined based on an area’s needs and commissioning arrangements. These forums should regularly assess routine TB surveillance data, including those of IHGs, and cohort review outcomes, developing TB prevention and control programmes, and ensuring TB programmes are tailored to the needs of IHGs.

Create joint fast-track referral pathways with partner agencies for individuals at risk of not completing treatment due to factors such as experiencing homelessness, or no access to funds, for example to provide access to housing or benefits.

Conduct local service mapping to identify networks of local organisations that work with IHGs and similar SRFs (for example health services, local authority, accommodation settings, community groups, and voluntary and charity organisations with similar interests) to support mutual goals. Create networking events or workshops to build these relationships, and maintain a shared directory of national and local services.

Use joint-funding arrangements across services such as ICBs, public health, local authorities, and third sector organisations to enhance services and efficient use of funds (for example, regional risk-sharing for funds to support individuals with NRPF), with a view to embedding it into long-term business plans and funding.

Enhance use of inclusion health data

Review local epidemiological data to identify relevant, local IHGs at risk of poor health outcomes, and use up-to-date health needs assessments to help prioritise and plan programmes of work.

Involve people with lived experience of social exclusion to understand their experiences and inform service design and commissioning.

Complete surveillance questionnaires accurately while completing forms, including negative findings (such as entering a field with ‘no’, rather leaving it blank) to ensure accurate surveillance and epidemiological data.

Enable local collaborative data sharing agreements between partner organisations on IHG sites, population demographics and numbers to help screening services identify target populations, people lost to follow-up and to enhance continuity of care.

Use cost-effectiveness data (either existing or modelled) to demonstrate the value of commissioning active TB and LTBI services, including prevention and outreach, in IHG populations. Include the overall value to local populations and public health including savings that can be made across public services.

National teams should work to develop and enhance data outputs available to those planning, delivering, and evaluating TB programmes. Improving data linkage and quality will enable accurate estimation of TB burden in IHGs to inform programmes of work.

Question 5

Theme 1. Providing accessible integrated care for IHGs

Accepted Answer

Participating in TB screening and treatment pathways can be difficult for IHGs due to multiple complex barriers:

provider barriers
screening barriers
treatment barriers
continuity of care
preventing transmission

Providing integrated and accessible services requires:

working in environments that individuals in IHGs feel comfortable in, and are likely to access (for those already in contact with services this can also aid continuity of care and mitigate barriers such as cost of travel to healthcare settings)
tackling stigma associated with TB
helping IHGs access health and social care using translation services and materials that take into account differing literacy levels
raising awareness of entitlements; all staff should be aware of IHGs entitlements to health care, including that they can register with a GP and it is not a requirement to provide proof of address, ID or immigration status to do so
ensuring flexibility when delivering services to individuals with complex needs
using peer support workers and people with lived experience to help provide individualised and culturally sensitive care
and building trust with communities and individuals who have been underserved

The exemplars, tools and resources below show the value and effectiveness of targeted screening, wider service integration, outreach work, use of peer support workers, sensitive communication techniques and culturally tailored communication and services.

These exemplars have been submitted from services across the country. Further information on leads with contact details can be found in the accompanying directory.

Exemplars of good practice: supporting screening and outreach

Northamptonshire: health check and screening programme

Background

A multi-agency exercise led by Northamptonshire County Council provides basic health checks and a communicable diseases screening programme for homeless and rough sleepers, migrant workers, asylum seekers and refugees including people displaced from Afghanistan, and some African countries.

What we did

It is funded by a joint resource pooling exercise between the local council, NHS, UKHSA, non-NHS providers and voluntary organisations to provide a ‘one stop health shop’ for identified IHGs.

Aims include:

improve access to services (GP registration, primary care, secondary, social care, housing)
provision of:
- BBV testing
- LTBI screening every alternative year
- risk assessment for active TB
- support into the treatment pathway to those requiring it
- offering hepatitis B and seasonal flu immunisation
identify non-communicable diseases, for example, oral health check-ups, liver scans, liver and kidney function tests, lipid profiles and blood pressure checks; NHS CVD Health Checks will be included from 2023 for those who are eligible, with local ‘Look after your liver’ and ‘Look after your lung’ campaigns

Lessons learned

These include:

use a multi-agency collaborative approach, including the voluntary sector, housing, outreach officers, drug and alcohol support services to enhance services
use trusted groups (for example Hepatitis Trust peer group, outreach workers, peers) and agencies, staffing and locations to support engagement and persuasion, advise on communication channels and issues such as stigma
enhance capacity through the use of alternative health providers, for example, community pharmacies for DOT

London: refugee and asylum seeker service of the Health Inclusion Team (HIT)

Background

The service delivers care to under-served migrants living in Lambeth, Southwark and Lewisham, London. Patients in all services are offered comprehensive health assessments, including screening for active and latent TB, BBV, parasitic infections and other medical and nutritional screening tests regardless of country of origin.

What we did

The 4 settings include a Health Inclusion Clinic in Brixton, a clinic for resettled refugees, and 2 initial accommodation hostels for asylum seekers. The Brixton clinic was a specialist primary care clinic for refugees, asylum seekers, refused asylum seekers, undocumented migrants and those with no recourse to public funds. Data from it showed that 33% of patients screened (aged between 16 and 65 years, regardless of date of entry into the UK) since 2018 had a positive IGRA test.

We allocate the patient a lead clinician, our secondary care MDT ensures the patient is supported to travel, and Health Navigators can support clients with accessing NHS services by offering accessible maps and escorting clients.

Due to unpredictable dispersal, we give patients a letter explaining their result and need for follow up, follow up any dispersed patients where possible and have developed close links with the local TB clinics to ensure that clients are seen as soon as possible before dispersal.

Lessons learned

These include:

the value of testing all under-served migrants, regardless of country of origin, noting travel journeys can include detention centres, prisons and refugee camps
a clear streamlined referral pathway with local TB/respiratory teams where all practitioners can refer in to ensure CXR is performed for quick diagnosis of active or latent TB
good communication with GP practices to understand IGRA results on handover

South Yorkshire: mobile TB service for asylum seekers and refugees in contingency accommodation

Background

People seeking asylum living in initial contingency accommodation (such as hostels) face logistical complexities attending the hospital for an outpatients appointment to be assessed for LTBI and treatment.

What we did

The TB nursing service supported the hospital respiratory consultant to provide a clinic in the contingency accommodation. This was an additional clinic that not only benefited patients but ensured no additional impact on the limited TB clinic resources available, and enabled patients to be seen in a timely fashion.

All patients had a telephone interpreter and had bloods taken if required at the time. After diagnosis of latent TB, TB nurses provided all follow up in this accommodation, and took the medication to the patients and utilised telephone interpreters to give full explanation of the diagnosis and treatment plan.

Support from Mears (the housing and social care provider) was given to provide a clinic space, support patients, and to establish good communication to improve access to the TB nurses as required.

Lessons learned

Flexibility in where we provide clinic assessment is important to providing care that responds to the local population. It has demonstrated a positive impact on the access to health care in a timely fashion, reduced the costly DNA rates and is cost effective. The hotel clinic supports the health and wellbeing needs of those seeking asylum.

London: RESPOND integrated refugee health service for asylum seekers and refugees

Background

Significant numbers of asylum seeking individuals are placed in our location, in initial accommodation (families and lone adults) and social care placements (unaccompanied asylum seeking children (UASC)), without TB screening.

What we did

Our service provides community-based holistic health assessments, including TB and other infection screening, followed by care planning and onward referral. The service is optimised at all stages to maximise engagement and optimise outcomes for this population. The service has delivered outreach assessment to more than 2,000 individuals in a year, identified LTBI in approximately 12%, and referred 100% of these individuals for onward treatment.

Lessons learned

These include:

proactive engagement for example liaising with accommodation providers to identify individuals to achieve engagement and attendance
bespoke administrative processes, for example, translated phone calls to ensure awareness of appointments, bespoke results letters, trained interpreters in appropriate dialect
a trauma-informed approach with appropriate training, peer review and reflective practice for staff
a family multi-disciplinary approach to ensure access (meaning all family members screened and treated in single appointment)
co-located infection screening as part of a single health encounter for assessment adapted clinical processes such as pragmatic screening process (IGRA only; TST not practical; chest X-ray (CXR) if positive); frequent follow-up and liaison with key workers which resulted in a very high percentage treatment completion
the importance of an integrated health plan to ensure consistency, and allow service users to advocate for themselves if relocated
cross-sector work, and flexible operational delivery for a population that is constantly changing

Birmingham and Solihull TB: screening unaccompanied asylum seeking children (UASC) for TB and BBVs

Background

Birmingham and Solihull TB services have screened around 60 UASC over a 12-month period.

What we did

Referrals were received via Birmingham and Solihull Community Paediatric Looked after Children (LAC) service. The LAC service examines children and young people and refers to the TB service for symptom screening and testing. They also arrange screening for HIV, hepatitis B and C where required.

This screening does not receive specific funding but is agreed locally.

Lessons learned

Future collaboration is planned between the Birmingham and Solihull TB service and Birmingham and Solihull Community Paediatric Services who currently do initial assessments. The collaboration will look into the processes needed to improve access to health services for the UASC. They will also assess the feasibility of a single blood test to screen for TB and BBV by the Birmingham and Solihull Community Paediatric Services.

Birmingham and Solihull: TB outreach work with sex workers

Background

A high proportion of sex workers come from high TB incidence countries, and have other risk factors such as drug use and prison exposure. However, they are also less likely to be picked up by other screening methods and may not normally access primary care.

What we did

Clients were screened by TB IGRA blood test when they attend a weekly sexual health clinic sessions. A total of 30% were positive for LTBI and several active TB cases were detected. Treatment was provided by weekly rifapentine/isoniazid at the sexual health clinic. There was no need for clients to attend clinics (other than for CXR). There was also no need for clients to take any medicine away with them, which they may have no capacity to store and could cause stigma if seen by others.

Lessons learned

The value of joint working between sexual health and TB services.

London: the Find and Treat outreach programme

Background

Find and Treat is a pan-London street outreach programme supporting people experiencing homelessness and other IHGs. Originally designed as a mobile X-ray screening service for TB among people experiencing homelessness, it has evolved into a comprehensive health programme, engaging 10,000 to 15,000 people each year.

What we did

Main components of the service include:

regular education and awareness-raising of TB symptoms in those working with the homeless population
schedule of regular mobile X-ray screening for TB in London hostels and street-based venues for people experiencing homelessness
point-of-care polymerase chain reaction (POC PCR) confirmation
support for TB outbreak response and ad-hoc screening in other inclusion health populations including people who use drugs, prisoners, asylum seekers and sex workers
integrated social work support enabling issues such as housing, and referral to voluntary and statutory services
peer practitioners supporting engagement and service delivery
a return to service programme to find and re-engage patients lost to follow up care including access to multiple data sets to search for these patients
a national NHS IT compliant secure smartphone-enabled VOT service

Lessons learned

These include:

investment in technology platforms including mobile diagnostics, information systems and telehealth can enable high quality outreach and treatment support
a multidisciplinary team with embedded peer workers enables engagement and
addresses wider needs
a multi-pathogen outreach approach maximises opportunities for efficiency and health gain
working over a large geographical footprint allows economies of scale for a highly mobile population
there is a need for commissioning models to support cross-boundary multi-pathogen outreach for efficiency

Lincolnshire: targeted TB screening and health promotion event for the street homeless

Background

Over the past 13 years, 10 out of 29 cases of TB (45%) of cases of TB in Boston, Lincolnshire were in people currently experiencing homelessness. Eight of these were within the same whole genome sequencing (WGS) cluster. All cases have either previously experienced homelessness or lived in difficult housing conditions, and many had multiple risk factors such as alcohol misuse and smoking.

What we did

Our targeted screening event of this group including a one-stop IGRA, CXR (via a Find and Treat van), sputum (if symptomatic), and wider health promotion support (such as smoking cessation advice and housing). It involved using our trusted voluntary and community sector partner CentrePoint as the communications lead for their members. 27 attended and no positive TB cases identified (culture results awaited). Then one-to-one semi-structured interviews were conducted with 15 attendees to explore reach, implementation and effectiveness of delivery.

Lessons learned

These include:

involve local partners and wider organisations in the planning stages of an event to increase ownership and to deliver it jointly
use local knowledge, and engagement with target group to inform when best to hold the event and consider use of important contacts in voluntary and community sector organisations (VCSOs) to promote the event
use trusted translators (such as people they already work with) to support service delivery
nearly all individuals we encountered on the day were registered with a GP, which could adjust how we decide to deliver services in the future
phlebotomists need experience working with underserved groups

Exemplars of good practice: supporting treatment

London: workshop for TB services using behavioural insights and interviewing skills

Background

Recognising the barriers to treatment completion, the UKHSA London team thought to apply behavioural insights methodology to the communications we use with patients, as well as practice methodology from sexual health services to have sensitive and non-judgemental conversations with patients, to better understand these barriers to compliance. These methods also drew on cultural competence and trauma-informed care.

What we did

UKHSA developed a series of workshops to support TB services, and stakeholders were invited to a face-to-face meeting. This included:

experts in behavioural insights explaining principles and working through real examples to improve communications (such as clinic letters)
role-play of scenarios facilitated by sexual health and HIV doctors experienced having difficult and sensitive conversations
active listening with patients, with a view to identifying barriers and levers, and exploring new solutions to reach mutual treatment goals

Lessons learned

These include:

important connections were made, and in-person sessions provided networking opportunities, and were more impactful
new tools were learned by some staff, for example, to focus on main points in written communications and simplify for impact
role-play was challenging but valuable, demonstrating non-judgmental ways of exploring more information for contact tracing, barriers to clinic attendance or non-adherence, which allows solutions to be better focused
NHSE created some training through the COVID-19 pandemic on trauma-informed care, especially for engaging with the homeless population, which may also be useful as many IHGs benefit from that approach

South East and South Staffordshire: getting permission to use VOT to support patients with complex needs

Background

Our TB team covers a large geographical area and some patients with alcohol and/or drug dependence require visits by 2 members of staff which makes DOT challenging. It can also be intrusive for the patient and inflexible. Information Governance (IG) at our trust had not accepted a request pre-pandemic for the use of WhatsApp to undertake VOTs, but we revisited this post-pandemic.

What we did

Application submitted to IG for permission to use in-house VOT in place of DOTs where appropriate, using apps routinely used by patients, for example, WhatsApp and Alexa. Permission has been granted, under certain conditions and with appropriate safely measures and protocols in place, and the use of a disclaimer.

Lessons learned

These include:

it is valuable to have options for VOTs and DOTs as no one system fits all
patients in-house VOT (which does not require additional software or IT costs) is cost-effective for monitoring patients who live far from our base, and safer for staff
allows resources to be focused where they are needed most; it provides more flexible, patient-centred care to certain complex TB patients, combined with home visits. However, some complex TB patients, particularly those with alcohol/drug dependence will struggle with VOTs and may still need DOTs
highlighting to the IG team about why VOT is crucial in TB care, in that for patient cure, how it is more cost-effective over DOT, can avoid drug resistance and prevents further transmission was crucial to approval

Mid and South Buckinghamshire: temporary housing and medication storage for people experiencing homelessness

Background

We had been administering TB medication via DOT to homeless clients on the streets. They had nowhere safe to store their medication, so we had to keep it for them.

What we did

We have in place a memorandum of understanding (MOU) in which we work together with the Council Housing team and charity Wycombe Homeless Connection to get clients who are smear positive housed as soon as possible in temporary accommodation until end of treatment.

Lessons learned

We had no access to a subsistence allowance for the clients, though the council did provide some food vouchers. Clients need a subsistence allowance that actually gives cash, for example to travel to attend appointments.

London: mental health triage and referral to Improving Access to Psychological Therapies (IAPT, now called NHS Talking Therapies)

Background

The prevalence of depression could be as high as 50% among individuals with TB, because of biological, social and behavioural factors. Depression is associated with delays in TB diagnosis and treatment, poor treatment outcomes, disability, poor quality of life and treatment failure. Patients who struggle to engage or adhere may have an underlying mental health problem.

What we did

A link was made with the local IAPT service and a referral criteria based on Patient Health Questionnaire-4 (PHQ-4) was agreed. We developed a simple proforma with a short introduction explaining the impact of TB diagnosis can have on some people. The PHQ-4 questionnaire was undertaken with all patients, with referral to IAPT made depending on responses. IAPT then make direct contact with the patient and offer assessment and treatment as per their normal protocols.

Lessons learned

This work was unfortunately suspended by the COVID-19 pandemic, although there is still the aspiration to get something set up again to support psychological wellbeing of TB patients, with option of referral to IAPT.

Exemplars of good practice: supporting contact-tracing

Berkshire West: using a translation service for contact tracing

Background

Contact tracing for a case of infectious pulmonary TB covered an English language course at a higher education setting. A total of 16 contacts, aged between 25 and 62 years, were identified for screening, who we were advised had very limited English language. The setting provided details of nationalities of the individuals but not their native languages.

What we did

The setting advised the best location for screening would be at the hospital (in a central and easily accessible location) as students were often very private about their health and may not want the academic setting involved.

We contacted the commissioned translation service (AA Global) to seek advice on the best languages for translation, given the information we had about the nationalities of the individuals. They responded very rapidly and we were able to progress with translation of a screening invitation letter and factsheet (for some languages, we were able to use previously translated factsheets). We liaised with the TB team to arrange appointment times for all contacts and these were added to the individual invitation letters. A total of 13 individuals were invited for screening within the local area. Of these, 10 individuals attended, one declined the appointment and only 2 individuals did not attend. They have been sent a second invitation for a future date.

Lessons learned

Having a translation service available for the invitations and factsheets was invaluable. It is highly likely that this contributed to the good attendance for screening.

Luton: mobile outreach service

Background

Until 2017, despite efforts from routine contract tracing and University College London Hospital (UCLH) Find and Treat service, ongoing active cases were still being identified in Luton TB strain typing cluster E1217.

What we did

Using the UCLH Find and Treat Mobile Health Unit, target populations were offered BBV screening, fibro scans, flu vaccine (winter only), sexual health and NHS Health Checks. On average, 16% of cohort screened had an abnormal CXR and were referred to same day TB respiratory services. Loss to follow-up was improved with active engagement through support workers, the TB team, UKHSA and follow up Find and Treat sessions. Since 2019, with targeted case finding via Find and Treat, the transmission chain for cluster E1217 has been very much broken, and no longer an acute concern.

Clear clinical pathways were developed and improved; there was a 75% uptake in BBV and liver screening of the cohort; and this approach won the service innovation award in the joint PHE, Faculty of Public Health and the Royal Society for Public Health 2018 conference.

Lessons learned

These include:

London: local NHS charitable funds to support IHGs with TB and using an outreach worker

Background

At Imperial Health Charity, funding is available via the Dresden Hardship Fund (supporting patients and families experiencing extreme financial difficulty as a result of their time in hospital, for up to £2,000, with a decision within 48 hours) and the TB Incentive Fund (maintained with donations generated by events) to support patients from IHGs.

Imperial Health Charity administer the fund jointly with the TB team so there is immediate access to funds to incentivise and enable people from IHGs to access and engage in treatment, for example, taxi for appointments, supermarket vouchers, mobile phone top up in conjunction with a DOT or VOT agreement, small gifts to help with isolation.

What we did

We have a dedicated TB outreach worker and a TB nurse with a remit for outreach work. The TB outreach worker is trained to do phlebotomy and electrocardiograms (ECGs) (with a portable ECG machine) in the community. We work collaboratively with our Find and Treat team, to ensure individuals can be escorted to medical appointments. We also have links with local foodbanks and the outreach team register the client onto the system where they are issued with a foodbank voucher, which they give to the client. Our outreach worker also uses Freecycle to source items for individuals.

Leicester, Leicestershire and Rutland: cultural link worker for local TB service

Background

The post of Cultural Link Worker for the TB service was created in 2010, with a business case submitted for a peer support role (Band 4). The role and responsibilities of the link worker were to:

act as an advocate for patients and families
ensure effective dialogue between non-English speaking families and services
provide cultural and religious awareness education and training for internal and external staff
be an autonomous practitioner

What we did

The Cultural Link Worker fulfils a highly valued role that is now integrated into the day- to-day practice of the TB team.

Main activities include:

accompanying specific patients attending outpatient appointments
joint home visiting with the specialist TB nurses
accompanying patients for investigative or medical procedures, for example bronchoscopy or PEG insertion
supporting treatment programmes by delivering DOT to patients
supporting treatment programmes by helping patients access resources and by signposting to other organisations
raising TB awareness by linking with community groups and providing information and education about TB
individual patient advocacy, with employers or other agencies
facilitating patient experience events and patient feedback activities

Lessons learned

These include:

the importance of in-person, compassionate delivery
a shift towards virtual and telephone activity during and since the pandemic has only increased the role’s value
the addition of a cultural link worker to our service has added quality and value to what we do, improving the patient experience and supported workforce challenges through a more creative way of working

Tools and resources

General overviews

NICE guideline (NG33) on TB includes principles on identification and management in IHGs or under-served groups.

NICE 2017 quality standards including on providing accommodation and DOT.

OHID Inclusion Health: applying All Our Health guidance for local service practitioners and providers at all levels on delivering for IHGs, with links to resources.

The full All Our Health Collection also include a wide range of relevant topics, including homelessness; health disparities and health inequalities; vulnerabilities; misuse of illicit drugs and medicines; and community-centred practice.

The LGA has produced guidance on local government’s public health role in tackling TB.

Tuberculosis control in big cities and urban risk groups in the European Union: a consensus statement.

Supporting screening and outreach

WHO recommendations for systematic screening for TB disease in targeted populations includes the recommendation on screening in IHGs in section 2.2 Systematic screening for TB disease among people with structural risk factors for TB.

NICE 2012 guidance on identifying and managing tuberculosis among hard-to-reach groups (Appendix N PH37).

BMA guidance on patient registration for GP practices.

GP Access Cards produced by Doctors of the World.

Supporting treatment

All Our Health: Vulnerabilities and trauma-informed practice is an All Our Health e-learning module is on trauma-informed practice.

The Union 2021 guidance on psychosocial counselling and treatment adherence support for people affected by TB. A technical guide created by TB Alert, with support from The Union, WHO EURO and the Stop TB Partnership (STBP), focusing on providing psychosocial conversational support, dealing with individuals’ self-stigma and shame, and providing multidisciplinary and collaborative psychosocial support, to aid overcoming barriers to treatment completion and screening.

WHO European Region quick guide to video-supported treatment of TB.

Supporting contact tracing

UKHSA’s outbreak management in short term asylum seeker accommodation is a practical guide for managing cases or outbreaks of infectious disease in asylum accommodation settings.

Tools and resources for specific IHGs

How to register with a doctor or GP:

leaflets for people experiencing homelessness
leaflets for Gypsy, Roma and Traveller communities
leaflets for asylum seekers and refugees

NICE has produced a Clinical Knowledge Summary and guidance for Integrated Health and Social Care for People Experiencing Homelessness.

The Homeless Health Peer Advocacy service provides peer support to people experiencing homelessness across a range of locations.

NHS Reconnect is a care after custody service that seeks to improve the continuity of care of people leaving prison or an IRC with an identified health need. This involves working with them before they leave to support their transition to community-based services, thereby safeguarding health gains made whilst in prison or an IRC.

A selection of the most relevant topics from the collection of OHID’s migrant health guide containing advice and guidance with links to resources include:

The full collection of migrant health guides includes a wide range of relevant topics, including children’s health; women’s health; mental health; immunisations; language interpreting and translation; and culture, spirituality and religion.

Refer to the appendices for more resources.

Question 6

Theme 2. Building inclusive partnerships

Accepted Answer

Many local organisations will have similar interests, responsibilities and strategic goals for IHGs.

Building strategic partnerships in these groups is essential to:

strengthen existing pathways
provide more comprehensive integrated services
address barriers to screening, follow-up and treatment completion
provide more holistic care
and make more efficient use of resources

The exemplars, tools and resources below show the value of mapping local services, and workshops to develop relationship building. Working across local primary and secondary care, community health services, accommodation and community settings, and voluntary and charity organisations is shown to be effective in addressing the above needs. Additionally, promoting leadership on TB at all levels helps prioritise TB delivery and strategic partnership working.

Exemplars of good practice

London: multidisciplinary support for TB patients; a workshop to explore resources

Background

Challenges were presented to TB services across the spectrum of IHGs, with increasing number of patients requiring enhanced case management and TB teams struggling to support people with many issues outside their area of expertise, and some without outreach workers in their teams.

What we did

UKHSA developed series of workshops to support TB services to identify and engage with other stakeholders in their locality who work with similar population groups, and who might be able to assist in supporting individuals through their course of treatment for TB or LTBI, or to encourage them to come forward for screening for TB. Programmes were developed based on local issues and recent cases, and stakeholders were invited to a face-to-face meeting with the wider TB network to explain who they are, their scope of work, how to contact them/refer patients to them and how both services might work better together.

Lessons learned

Important connections were made, and the face-to-face format was great for networking, and more impactful. A local directory was drawn up after the meeting, although there was not capacity to keep this up-to-date. The expectation was that once teams had made connections, they would continue to liaise with these services, and maintain their own contacts. However, a more generalised list of useful websites was also developed and shared.

Mid and South Buckinghamshire: fast-tracked accommodation protocol for homeless clients with TB and no access to public funds

Background

Buckinghamshire TB team identified a need to better provide for their 2 to 3 homeless TB cases per year.

What we did

We developed a protocol with the social services team and Buckinghamshire County Council (BCC) to identify link social workers. The aim was to provide fast-track access to appropriate accommodation for the length of TB treatment for those who are homeless by working closely with the local council and social services. This protocol would ensure patients on treatment are never discharged into homelessness. We work closely with Wycombe Homeless Connection who support our clients.

Lessons learned

Fast-tracked accommodation enables clients to build trusting relationships with the TB service and care providers. It promotes adherence to TB medication thus preventing transmission and reducing TB.

Homelessness remains a concern, particularly in clients who have no access to public funds, who may face eviction after treatment completion.

London: Olallo House SJOG

Background

Olallo House includes a 5-bed residential unit for destitute Eastern European TB patients in London.

What we did

Available to all TB services in London, the unit has a dedicated support worker, and each resident has an individual care plan. The dedicated support worker seeks to enable residents to regularise their residency, access benefits and/or employment in order to move on into independent, self-supported, accommodation and to support the resident to complete TB treatment.

The unit is part of a larger complex served by the charity Saint John of God Hospitaller Services. The TB patients are usually funded via contributions from clinical commissioning groups (CCGs) (pre-July 2022).

We now have provision for 10 beds available on a spot purchase basis funded by ICBs. We support not only Eastern Europeans but any NRPF individual with TB and support needs (in 2022 we supported 28 different nationalities). All staff at Olallo House speak at least one second-language; collectively, the team speaks over 20 languages.

We also work closely with community mental health, sexual health and drug and alcohol services. Additionally, we provide in-house English for Speakers of Other Languages (ESOL) classes and organise weekend leisure activities.

Lessons learned

The most significant barrier to treatment completion is alcohol dependence, leading to treatment being suspended and/or extended. Owing to diversity of cultures at Olallo, there is no one-size-fits-all approach that can effectively address this, and we believe there is scope to develop a more culturally aware alcohol service that takes into account the cultural background of change-resistant drinkers with a focus on harm- reduction.

A published evaluation of the Olallo house model showed treatment completion was 3 times more likely in those treated at Ollallo house compared to similar patients and death was 3 times less likely.

Background

Previously funding of accommodation for TB patients experiencing homeless with NRPFs required business cases each time accommodation was needed, along with evidence of the public health rationale.

What we did

The London Clinical Leadership Group (a subgroup of the London TB control board), seeking a more efficient and equitable process, resulted in a business case for a risk share arrangement between all London CCGs to fund accommodation for TB patients experiencing homelessness and have NRPFs. This was accepted and an operational policy and governance structure was developed.

All patients require an assessment of their eligibility for housing and other benefits in the first instance, and only those who have NRPFs, on TB treatment and currently homeless, are referred to this pathway. Accommodation is linked to treatment compliance and only for the duration of treatment.

In the first year, 28 patients were accommodated coming from 15 different CCGs. Most were accommodated in Olallo House, but a significant number also in local bed and breakfasts.

Lessons learned

During a period of commissioning change it was difficult to get funding commitments by CCGs (who were disbanding), or ICBs (who were not fully functional). While all CCGs wished to continue with the pathway, they wanted only to pay for their CCG so a ‘pay as you go’ model was adopted. This was complex, time consuming to administer, and introduced delays into the system. Reverting to the original model has improved the situation.

Tools and resources

List of useful organisations for TB teams to link with national services.

Organisation	Description or role
Drink Aware	Helps reduce alcohol-related harm by helping people make better choices about their drinking
Narcotics Anonymous	Society of recovering addicts who meet regularly to help each other stay clean
Doctors of the World	Access to healthcare for marginalised people
Centrepoint	The UK’s leading youth homelessness charity
Crisis	National charity for people experiencing homelessness
St Mungos	Prevents and supports those experiencing homelessness
Groundswell	Supports involvement from homeless people in delivering solutions to homelessness
Migrant Accommodation Pathways Support service	A service supporting non-UK nationals sleeping rough in London
Homelessness Link	Umbrella organisation for all frontline homelessness agencies
British Red Cross	Befriending, equipment loan, family tracing, refugee and asylum seeker support
Salvation Army	Homelessness, employment, trafficking and modern slavery support (includes indicators)
Mind	Mental health charity
The Pavement Magazine	Tailored to a homeless readership, providing a complete range of services
Refugee Council	Provides free advice and information to asylum seekers and refugees in the UK
Modern Slavery Helpline	Health and advice about modern slavery
Domestic Victim Support	Support specific to survivors of domestic violence
SWARM	Campaign for the rights and safety of everyone who sells sexual services
Law Works	Legal advice charity
Caring for Prison Leavers	Includes a list of accommodation, addiction, education, financial and emotional support services
Terrence Higgins Trust	Support for people living with HIV
Next meal	Directory of free food venues and other support
Trussell Trust	UK foodbank network
Friends, Families and Travellers	Charity supporting GRT people
Turning point	A social enterprise, designing and delivering health and social care services in the fields of substance use, mental health, learning disability, autism, acquired brain injury, sexual health, homelessness, healthy lifestyles, and employment.

List of local services for TB teams to link with

Organisations include:

Citizens Advice
drug and alcohol service
needle and syringe programmes
probation service
hospital discharge teams and programmes
hospital homeless team or inclusion health team
providers of homeless services, including churches
providers of asylum seeker accommodation
winter shelter lists
local services offering free food provision
local council housing services
local specialist primary care
local prisons
local BBV, HIV and STI services
regional strategic migration partnerships

Refer to the appendices for more resources.

Question 7

Theme 3. Use of inclusion health data to support service design and commissioning

Accepted Answer

A data-driven, locally tailored approach to TB services will help to effectively identify IHGs to target with services, and help inform outreach work.

Planning effective services for IHGs requires knowledge about the characteristics of the population, trends over time and differences between geographical areas.

Effective use of local data is also crucial when making the case for commissioning new services, extending or adjusting existing services.

Routine TB surveillance

In 2021, National Tuberculosis Surveillance System (NTBS) was launched and replaced 2 historical surveillance systems:

the Enhanced Tuberculosis Surveillance system (ETS)
the London TB Register (LTBR)

This allowed for SRF variables to be more consistently recorded. This is used to collect the data, nationally, that informs the following reports:

Routinely collected data as part of this surveillance is relevant to SRFs and IHGs and includes:

TB rates by area-level deprivation
country of birth and year of entry to the UK employment status

More complete data collection of SRFs started from 2018 onwards and includes:

current alcohol misuse
current or history of drug misuse
current or history of imprisonment current or history of homelessness
asylum seeker status (including if remanded in an immigration detention centre; added to surveillance as discrete variables from 2020)
current or history of mental health needs

Data for individual SRFs reported are limited to those with recorded data, for example, a ‘yes’ or a ‘no’. Improving data completeness will result in a better estimate of the true proportion of the people with each SRF.

Estimating TB burden in IHGs

Existing systems that monitor and report population size of specific IHGs, often collect limited data of variable quality. This limits the use of the data for calculating rates of disease and comparing sub-populations. Most data sources do not currently describe the populations at risk of TB with enough accuracy or completeness to create precise or valid measures of TB burden. Better data on the size of inclusion health populations is needed to improve estimation of comparative disease rates and avoid making imprecise or erroneous conclusions.

Further data linkages required between the NTBS and other systems, to better improve the understanding of TB in IHGs include:

prison incidents data
Find and Treat data
data collected on those who are in contact with drug and alcohol treatment services (the National Drug Treatment Monitoring System (NDTMS))

Data on addresses of homeless hostels, prisons, asylum seeker accommodation, and GRT sites could help identify further cases in IHGs.

Local data that can be drawn upon include:

Published studies

Commissioning decisions should ideally be founded on strong evidence, from high-quality research studies. The scoping review highlights that such evidence is not always available and conducting experimental studies to fill evidence gaps is not always feasible. Further research is needed to address gaps in knowledge for GRT populations, sex workers and individuals with mental health disorders.

Measuring success in TB control

Useful metrics for national and local services when commissioning and evaluating services for IHGs include:

number of new diagnoses of TB
proportion of individuals completing treatment successfully (for both drug sensitive and drug-resistant TB)
proportion of TB cases on DOT or VOT
time from onset of symptoms to treatment start date in individuals, with the target of a decrease in time over the course of the intervention or service time period

All of these should, where possible, be broken down by risk group to allow assessment of which groups are most affected, enabling targeting of resources.

It is also important to collect narrative data on the lived experience of those in IHGs to help understand barriers to care and support design of services to address these barriers.

Exemplars of good practice

Yorkshire and Humber: Collaborative data system across agencies to improve TB support in asylum seeker settings

Background

We identified the need to improve communication about new contingency accommodation sites and sharing of information between the Home Office and TB nurses.

What we did

A number of agencies and organisations collaborated on this work:

OHID
UKHSA
NHSE
the Home Office and their commissioned accommodation provider (Mears)
the strategic migration partnership (SMP) migration Yorkshire
the regional TB nurse forum

They worked together to develop a process for better communications about new sites, and our SMP now provides TB teams and other stakeholders with a regular update on contingency sites, numbers, and demographics.

We have also set up a process to enable data to be shared with TB teams (and primary care) on a weekly basis about new residents and where they are from, to support TB screening work.

Lessons learned

It is important to work closely with your SMP to develop work more broadly around health, and not take a siloed approach. By bringing a range of partners together across different sectors and organisations, it has resulted in improved communications to better support the health and wellbeing needs of those seeking asylum.

Tools and resources

OHID’s Public Health Outcomes Framework indicators.

Homeless Link’s data and information services, which includes data and maps on homeless and rough sleeping populations across England, a database of services for people experiencing homelessness, and information on carrying out a health needs audit of homeless populations.

UKHSA’s work on the cost-effectiveness of multi-pathogen outreach models: useful for making the case for integrated testing services, this research looked at the costs, benefits and cost-effectiveness of 3 multi-pathogen POC testing strategies for common sexually transmitted infections (STIs) in outpatient genitourinary medicine (GUM) services in England.

NICE identifying and managing TB among hard-to-reach groups: includes information on the cost-effectiveness of case-finding and mobile screening in homeless and prison populations, as well treatment completion.

Refer to appendix 2 for an example business case for using national VOT service.

Question 8

Appendices

Accepted Answer

Appendix 1: Provision of free TB medication to all

Valid letter on the entitlement of free on medication for all TB patients.

Appendix 2: Example business case for using national VOT service

Clinical TB networks in Yorkshire and Humber have put together a ‘template’ business case for accessing the national VOT service. The aim was to support discussion with commissioners and funders on commissioning the London national VOT service for supporting TB patient adherence locally.

Appendix 3: Standard operating procedure (SOP) for Video Directly Observed Therapy (VDOT)

An example SOP by Buckinghamshire Healthcare NHS Trust for VDOT. This includes an example consent form, medication chart and patient leaflet.

Appendix 4: A leaflet for the RESPOND Advice and Guidance Virtual MDT for care planning for complex asylum seeker and refugee cases

The UCLH RESPOND Advice and Guidance Virtual MDT for advice and guidance and care planning for complex asylum seeker and refugee cases has been expanded to all services and locations in England.

The MDT is hosted by UCLH in partnership with key regional and national stakeholders in refugee health, including the Helen Bamber Foundation. Advice and guidance is delivered by a core expert panel of specialists in Migrant Health, Infectious Diseases (adult and paediatric), Safeguarding and Mental Health (adult and child and adolescent mental health services (CAMHS)). Local Authority Safeguarding, Early Help and Education teams as well as Health Visiting and School Nursing services are represented. They have produced a flyer with the referral process. The infection screening (for families, children, and adults) is also still running.

Appendix 5: Pathway for the management of TB in the secure setting

A pathway for TB management in the secure setting, created by the South West provider, including an appendix and algorithm. Regions are now standing up regional TB Boards in collaboration with partners, usually co-chaired with the Regional NHSE CEO and Regional Deputy Director for UKHSA. This was marked in the South West with a TB event linked to the board, with prisons, asylum hotels and other populations with SRFs highlighted as focussed populations.

Appendix 6: national access to translation services

This provides access to a centrally-funded UKHSA translation service. A SOP of this process is currently being created.

Download the AA Global service request process slides.

Download the AA Global service request form spreadsheet.

The regional Health Protection Teams (HPT) health equity leads network is currently working on a plan to use existing funds to translate documents used in health protection acute responses for all infectious disease, and the prioritisation of these materials.

Appendix 7: Examples of TB awareness-raising material

UKHSA-branded graphics created for World TB Day include:

Milton Keynes-branded TB materials created for World TB Day, created by Milton Keynes University Hospitals Trust, include:

These have been disseminated to GPs, and are on the hospital website.

To mark World TB Day, a TB quiz was created with prizes for the winners drawn on the day. A TB stand was also hosted at the main entrance of the hospital, as well as in the restaurant, to mark the day.

Question 9

References

Accepted Answer

1. Campos-Matos I and others. From health for all to leaving no-one behind: public health agencies, inclusion health, and health inequalities. The Lancet Public Health 2019: volume 4 issue 12: E601 to E603

2. Pathway (2018). Homeless and Inclusion Health standards for commissioners and service providers (viewed 20 November 2023)

3. National Institute for Health and Care Research (2023). Collection on Multiple long-term conditions (multimorbidity) and inequality- addressing the challenge: insights from research (viewed 20 November 2023)

4. Regmi K and Mudyarabikwa O. ‘A systematic review of the factors - barriers and enablers - affecting the implementation of clinical commissioning policy to reduce health inequalities in the National Health Service (NHS), UK’ Public Health 2020: volume 186: pages 271 to 282

5. Local Government Association (2017). The impact of homelessness on health: a guide for local authorities (viewed 20 November 2023)

6. Homeless Link (2022). Unhealthy State of Homelessness 2022: Findings from the Homeless Health Needs Audit (viewed 20 November 2023)

7. Armstrong M and others. ‘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 2021: volume 11: E053185

8. The Nuffield Foundation (2022). ‘Vulnerability, migration, and wellbeing: investigating experiences, perceptions and barriers’

9. Asif Z and Kienzler H. ‘Structural barriers to refugee, asylum seeker and undocumented migrant healthcare access. Perceptions of Doctors of the World caseworkers in the UK’ SSM – Mental Health 2022: volume 2: 100088

10. The Nuffield Trust (2021). Injustice? Towards a better understanding of health care access challenges for prisoners (viewed 20 November 2023)

11. UK Parliament House of Commons Committee report (2019). Tackling inequalities faced by Gypsy, Roma and Traveller communities (viewed 20 November 2023)

12. Dando CJ and others (2019) ‘Health inequalities and health equity challenges for victims of modern slavery’ Journal of Public Health 2029: volume 41, issue 4, pages 681 to 688

13. UKHSA (2017). Modern slavery and public health (viewed 20 November 2023)

Recent studies reference list

Below is a list of recent studies on ‘What impact did the COVID-19 pandemic have on TB services, particularly for vulnerable groups?’

14. Watts K, McKeown A, Denholm J, Baker AM. Responding to COVID-19: Adjusting TB services in a low-burden setting. International Journal of Tuberculosis and Lung Disease. 2020;24(8):866-9.

15. British Thoracic Society. Impact of COVID-19 on Tuberculosis Services in the UK - Survey Report London: British Thoracic Society 2021.

16. Picchio CA, Valencia J, Doran J, Swan T, Pastor M, Martro E, et al. The impact of the COVID-19 pandemic on harm reduction services in Spain. Harm Reduction Journal. 2020;17(1):87.

17. Bharmal A. Kings Fund. 2021.

18. Aranda Z, Sanchez-Perez HJ. The need to address the impact of COVID-19 on TB control for vulnerable groups. Public Health Action. 2022;12(3):147.

19. Doctors of the World. A Rapid Needs Assessment of Excluded People in England During the 2020 COVID-19 Pandemic. 2020.

20. National Institute for Health and Care Excellence. Identifying and managing tuberculosis among hard-to-reach groups. NICE; 2012.

21. Nkereuwem O, Nkereuwem E, Fiogbe A, Usoroh EE, Sillah AK, Owolabi O, et al. Exploring the perspectives of members of international tuberculosis control and research networks on the impact of COVID-19 on tuberculosis services: a cross sectional survey. BMC Health Services Research. 2021;21(798).

22. Godoy P, Parron I, Barrabeig I, Cayla JA, Clotet L, Follia N, et al. Impact of the COVID-19 pandemic on contact tracing of patients with pulmonary tuberculosis. European Journal of Public Health. 2022;32(4):643-7.

23. Roberts T, Sahu S, Malar J, Abdullaev T, Vandevelde W, Pillay YG, et al. Turning threats into opportunities: how to implement and advance quality TB services for people with HIV during the COVID-19 pandemic and beyond. Journal of the International AIDS Society. 2021;24(4).

24. Thorburn Gray A, Surey J, Esmail H, Story A, Harris M. “It’s too hard” - the management of latent TB in under-served populations in the UK: a qualitative study. BMC Health Services Research. 2022:1464.

25. NHS England. Covid-19: Provision of tuberculosis services update. 2021.

26. Aguiar A, Furtado I, Sousa M, Pinto M, Duarte R. Changes to TB care in an outpatient centre during the COVID-19 pandemic. Paris, France: International Union Against Tuberculosis and Lung Disease; 2021. p. 163-6.

27. Lippincott CK, Perry A, Munk E, Maltas G, Shah M. Tuberculosis treatment adherence in the era of COVID-19. BMC Infectious Diseases. 2022;22(1):800.

28. Heuvelings CC, Greve PF, de Vries SG, Jelle Visser B, Bélard S, Janssen S, et al. Effectiveness of service models and organisational structures supporting tuberculosis identification and management in hard-to-reach populations in countries of low and medium tuberculosis incidence: a systematic review. BMJ Open. 2018;8(9):e019642.

29. Graham S. Tuberculosis in Children and the Impact of COVID. Pediatric Pulmonology. 2022;57(Supplement 2):S33-S4.

30. Nellums L, Rustage K, Hargreaves S, Friedland J, Miller A, Hiam L, et al. The lived experiences of access to healthcare for people seeking and refused asylum. 2018.

31. Lee S, Do DA, Quy PN, Hashimoto M, Nam NH, Truong QQB, et al. Community-led tuberculosis and COVID-19 risk communication in the Vietnamese migrant population in Japan. Respirology. 2021;26(SUPPL 3):27-8.

32. Goscé L, Girardi E, Allel K, Maria Cirillo D, Barcellini L, Stancanelli G, et al. Tackling TB in migrants arriving at Europe’s southern border. International Journal of Infectious Diseases. 2021:S28-S32.

33. Potter JL, Burman M, Tweed CD, Vaghela D, Kunst H, Swinglehurst D, et al. The NHS visitor and migrant cost recovery programme - a threat to health? BMC Public Health. 2020;20(1):407.

34. Izzard A, Wilders S, Smith C, Wickers M, Hart T, Dos Santos J, et al. Improved treatment completion for tuberculosis patients: The case for a dedicated social care team. Journal of Infection. 2021;82(3):e1-e3.

35. Beaudry G, Zhong S, Whiting D, Javid B, Frater J, Fazel S. Managing outbreaks of highly contagious diseases in prisons: a systematic review. BMJ global health. 2020;5(11).

36. Babando J, Quesnel DA, Woodmass K, Lomness A, Graham JR. Responding to pandemics and other disease outbreaks in homeless populations: A review of the literature and content analysis. Health & social care in the community. 2022;30(1):11-26.

37. Andrews F, Kaur H, Dedicoat M. 3 Outcomes of Tuberculosis contact tracing and predictors of success: a 10-year retrospective cohort analysis. Clinical Infection in Practice. 2022;15(Supplement 1):100164.

38. NHS Highland. Health and Healthcare in Prison: A Literature Review 2020. 2020.

Cookies on GOV.UK

Foreword

Executive summary

Enhance engagement in screening and prevention

Enhance communication, health literacy and awareness on TB and IHGs

Enhance early diagnosis and treatment completion in IHGs use

Build inclusive partnerships

Enhance use of inclusion health data

Introduction

Defining inclusion health groups

Using this toolkit

The current state of TB in IHGs in the UK

Social risk factors, deprivation and risk of TB

Estimating TB rates in IHGs and other new analyses

Table 1: Age and sex-adjusted associations between individual social risk factors, clinical characteristics and TB treatment outcomes in England, 2019 to 2021 (aggregate data, refer to supplementary slide deck and associated data files).

Notes

Inclusion health TB indicators

Indicator 2

Indicator 5

Indicator 6

Indicator 15

The impact of the COVID-19 pandemic on TB services

Insights from published evidence

Findings

Insights from stakeholder consultation

Main findings

Current approaches and standards for addressing health equalities and meeting the needs of IHGs

Core20PLUS5

NHS Inclusion Health Framework

Health Education England

All Our Health approach

UKHSA 3-year strategic plan

Challenges facing IHGs that impact on TB

Shared challenges

Individual

Community

System

Specific challenges for each of the IHGs

People experiencing homelessness

Vulnerable migrants

People in contact with the CJS

Sex workers

GRT groups

Victims of modern slavery

People with drug and alcohol dependence

Latest evidence on improving treatment adherence and/or completion in IHGs

Summary of important findings in the scoping review

Treatment completion

Screening engagement

Qualitative findings on barriers and facilitators to treatment initiation and adherence

Results from consultation exercise with TB nurses and regional TB leads and programme managers

Initiatives to support IHGs

Toolkit recommendations

Enhance engagement in screening and prevention programmes

Enhance communication, health literacy and awareness

Enhance early diagnosis and treatment completion in IHGs

Build inclusive partnerships

Enhance use of inclusion health data

Theme 1. Providing accessible integrated care for IHGs

Exemplars of good practice: supporting screening and outreach

Northamptonshire: health check and screening programme

Background

What we did

Lessons learned

London: refugee and asylum seeker service of the Health Inclusion Team (HIT)

Background

What we did

Lessons learned

South Yorkshire: mobile TB service for asylum seekers and refugees in contingency accommodation

Background

What we did

Lessons learned

London: RESPOND integrated refugee health service for asylum seekers and refugees

Background

What we did

Lessons learned

Birmingham and Solihull TB: screening unaccompanied asylum seeking children (UASC) for TB and BBVs

Background

What we did

Lessons learned