Understanding aims, successes and challenges of palliative care and homelessness initiatives across the UK: an exploratory study

Quantitative findings

As of November 2022, a total of 202 people were registered within the ECHO network; 162 network members completed the survey. Respondents illustrated that initiatives in the field were undertaken by a broad range of professionals. 19 different professions were outlined; clinical nurse specialists in palliative care (n=23, 14.2%), homelessness outreach staff (n=22, 13.5%) and registered nurses in inclusion health (n=21, 12.9%) were the most common professional groups. The NHS was the most common employer, with 46.3% (n=75) respondents working for the NHS in some capacity, spread across primary care (n=23), secondary care (n=36) and ‘NHS other’ (n=16). Many respondents also worked for hospices (n=50, 30.9%) or a charity/voluntary sector organisation (n=33, 20.4%).

The majority of respondents (n=101, 62%) reported that they were (or had been) involved in at least one palliative care and homelessness initiative: 62% (n=62) of those involved in any initiatives were involved in just one, 18% (n=18) in a second and 0.06% (n=1 respondent) in a third. This involvement represents a total of 143 initiatives. A detailed breakdown of initiatives can be seen in table 1.

Table 1

Breakdown of initiative involvement and type

When considering only those respondents who were involved in at least one palliative care and homelessness initiative, the three most prevalent regions were London (n=22, 22%), South East England (n=22, 22%) and North West England (n=19, 19%). Wales and Northern Ireland were not present in this analysis.

Qualitative findings: thematic analysis

From the 111 initiatives reported, there were 6 key themes emerging from the initiative aims, 6 themes surrounding successes (which closely align with the aims) and 5 themes regarding challenges (box 1). A breakdown of the themes can be seen in box 1.

Box 1

Overview of themes

Initiative aims: themes

  • Supporting people into appropriate accommodation

  • Creating links

  • Improving access to palliative care services

  • Patient care and service delivery

  • Training and education

  • Supporting the needs of homelessness staff

Initiative successes

  • Provision of safe, comfortable housing

  • Formed and sustained relationships

  • Improved service engagement

  • Ability to honour EOL wishes

  • Upskilling staff

  • Safe hospital discharge

Initiative challenges

Aims and successes of initiatives

Aim 1: supporting people into appropriate accommodation

Many initiatives aimed to support individuals experiencing homelessness with complex care needs to find safe, comfortable accommodation in which their advanced ill-health needs could be supported and preferences for EOL fulfilled. Types of accommodation within these initiatives included hostel accommodation, hospice beds and temporary housing. Other initiatives aimed to ‘help people sustain their tenancies or find longer-term housing’ (housing organisation employee).

I manage a residential care home for older men who have a longstanding history of homelessness. We provide long term accommodation and care for those whose care needs are too high for hostels. Care home manager

A number of initiatives aimed to overcome the difficulties of supporting individuals with palliative care needs who were living in hostels. For example, some initiatives developed tailored accommodation services, while others, due to very limited options of accommodation for people with high support needs, worked towards facilitating EOL wishes within current accommodation provision: ‘[organisation] works with people with very high levels of need and who are often multiply excluded from mainstream service provision’ (housing organisation employee).

Initiative successes: provision of safe, comfortable housing

Leading from this aim, a key success of many initiatives was the provision of safe, comfortable housing. Multidisciplinary teams were able to overcome multiple challenges to gain housing provision for individuals in need, including in emergency situations where accommodation was required promptly. Where individuals were already in housing, initiatives supported them to remain in this accommodation and ‘ensure that they maintain their tenancies’ (outreach homelessness staff) over the longer term.

Aim 2: creating links

Many initiatives aimed to build and maintain connections with other services and professionals. These connections often aimed to span various fields (including academia, primary and secondary healthcare, and homelessness services), creating links that interlace throughout the field of palliative care and homelessness. Respondents often reported secondary aims for creating such connections, for example, aspirations that creating links between services would improve service pathways for patients, from referral or admission to discharge: ‘Building and maintaining links with local homeless GP practice and pall care team and have recently extended those to link in with hepatology specialist nurses to try to improve pathways’ (inclusion health nurse). Some initiatives aimed to create partnerships with social workers and solicitors, to consult and gain support surrounding legal matters arising at the EOL for PEH: ‘I am also developing cross-agency learning around legal needs; this will be one of my project interventions later this year’ (palliative care doctor). Ultimately, initiatives aimed to build a more cohesive, interconnected network for professionals to ultimately improve the support that PEH receive towards the end of their lives.

Initiative success: formed and sustained relationships

Consequently, multi-disciplinary relationships throughout services across the UK were reported. These links allowed for collaboration between services, smoother referrals and the opportunity for professionals to learn from one another. Respondents referred to these relationships as ‘a community of practice’ (clinical nurse specialist in palliative care), illustrating the application of relationships for both educational and clinical gain. Consequently, improvements in joined up, wrap around care were reported.

Importantly, one initiative reported success in fostering professional relationships with individuals experiencing homelessness and consequently building an ‘active lived experience group’. They maintain long-term, strong working relationships with this group, who provide input and feedback to any future or ongoing initiatives.

Aim 3: improving access to palliative care services

A further aim of many initiatives was to improve access to palliative care services for PEH. Some initiatives aimed to identify and address the existing causes of inequities in access, while other initiatives aimed to create a service that supported PEH to access and navigate palliative care services. Coherent throughout most initiatives with this aim was the ambition to improve continuity of care and reduce unsafe discharge from a hospital to the streets.

Referral to and support from specialist palliative care services for individual patients and service providers across the city. Co-ordination of personalised patient care and improved access to shared records to ensure continuity of care. Hospice nurse consultant

Initiatives also referred to ‘Improving access to end of life care for people who use substances (alcohol and other drugs)’ (inclusion health nurse). This included overcoming stigma throughout services and challenges with fluctuation in patient presentation, for example, ‘Ensuring that the client has access to health services, assessing need and reconnecting with disengaged services is main focus’ (homelessness outreach staff).

Initiative success: improved service engagement

Resultantly, one key success was increased engagement of PEH with a range of services. Greater connection was reported with general practitioner practices, outpatient hospital appointments, palliative care services and advance care planning consultations. For some, this included engagement with disease-specific services, including oncology units or consultants, with whom previous referral appointments had been missed. Some initiatives supported both patients and their key workers (if applicable) to liaise with services to ensure suitable appointment times and locations which maintained engagement with services and reduced missed appointments. For some initiatives, increased engagement also covered adherence to prescription medications.

Have been successful: registering clients to health services, supporting attendance to appointments (and reducing no shows), and supporting follow up needs e.g. prescriptions, hospital bookings etc. Homelessness charity professional

Aim 4: patient care and service delivery

For many, the main aim of their initiative was facilitating person-centred care and choice for PEH towards the EOL. Many initiatives acknowledged the importance of delivering support within a place of the patients’ preference, thus aiming to identify and address challenges that accompanied this. Challenges around choice in place of care for PEH towards the EOL included limited availability of beds in places that could provide the necessary support, particularly for people with active substance use issues. Where PEH preferred to stay in a hostel, the management, storage and administration of medications were another challenge that initiatives sought to overcome. Furthermore, initiatives aimed to consider and address the complexities of delivering EOLC for many PEH such as comorbidities (including trimorbidity), mental health needs and substance use disorders, while providing holistic, individualised support towards the EOL: ‘[I was] supporting a patient with complex physical and mental health needs, due to end stage renal failure+other physical co-morbidities, drug use and living in a hostel environment’ (inclusion health nurse).

Initiative successes: ability to honour EOL wishes

16 initiatives reported succeeding in honouring patients’ EOL wishes. Generally, this meant facilitating a comfortable, dignified death in a place that was acceptable to patients. Initiatives also reported honouring specific, personalised wishes such as spending time with pets and being reunited with lost friends and relatives. An important wish for many was the ability to continue consuming alcohol or using drugs—some initiatives reported successes liaising with complex needs to support care homes that allow alcohol and supervised drug use for people approaching EOL. Oftentimes, initiatives reported that conversations carried out in advance to a person becoming seriously unwell served as a useful prerequisite for honouring EOL wishes.

Numerous initiatives aimed to create and deliver training and education programmes that encouraged professionals to both identify and support palliative care need in individuals experiencing homelessness. These often aimed to build on existing skills and increase staff confidence, particularly when identifying individuals with palliative care needs.

My aim is to educate and provide training to hospital staff/hostel support workers/outreach teams /students to be able to identify and better prepared to support people with palliative care needs and advancing disease. Homelessness discharge nurse with palliative care nursing

Initiatives also aimed to provide training to non-clinical professionals working on the frontline, who often have no training in health and social care: ‘Developed and delivered an education programme around Palliative Care and Homelessness to hostel staff, council outreach teams and West Mids Police in 2019’ (researcher). Education for these professionals often had similar aims to training provided to clinical staff, that is, to understand what palliative care needs could look like for this population and how best to support people with advanced ill health.

Initiative successes: upskilling staff

As a result of training, many respondents reported an upskilled workforce in both homelessness and healthcare services. This pertained to both practical ability and confidence. These training benefits were especially reported in non-clinical staff:

By educating frontline staff there is a better understanding of deteriorating patients, palliative and end of life care. Frontline non clinical Staff are less fearful if a patients preferred place of care is to die with dignity in their hostel with the right care being provided by relevant services. Registered nurse—inclusion health

A particular area of increased confidence was EOLC for individuals with substance use disorders. This included prescribing EOL medicines, supporting approved drug use and liaising with palliative care teams to deliver care in hostels. Respondents reported that both their clinical and non-clinical staff felt empowered as a result of further education, allowing them to be assured in their day-to-day support of PEH with palliative care needs.

Aim 6: supporting the needs of homelessness staff

Several initiatives aimed to ensure that frontline workers were receiving adequate institutional support from their employer, emotional support and counselling, and bereavement support if required.

To make sure frontline services have an outlet to access support and advice from fellow colleagues. [Homeless palliative care coordinator

Within the data collected, many initiatives emphasised that without proper support, staff can be ill equipped to provide care for PEH with advanced ill health. Supporting people in this position can be emotionally challenging; staff support is a prerequisite to achieving good support for PEH who may benefit from palliative care support.

Initiative successes: safe hospital discharge

The successes of safe hospital discharge were discussed in six initiatives. Particularly, in helping patients ‘navigate their way from hospital into community via interim bed’ (inclusion health nurse) to prevent return to street homelessness. This was used as an opportunity to liaise with housing associations, to support individuals into accommodation following discharge. The ultimate success here was ‘discharge to a place of safety that they were happy with for their end of life care’ (registered nurse—inclusion health).

Initiative challenges

Stigma and misunderstanding of the use of substances

The most frequently described challenge was lack of cohesion across services and staff regarding empathy towards alcohol and drug use: ‘Getting other health professionals to be open and less judgmental, and care compassionately for people with homelessness and complex health needs’ (registered nurse). Stigmatised perspectives on care for individuals who use drugs and alcohol were often referred to as ‘a difference in opinion between professionals’ that had knock-on effects for patients. It caused difficulty in accessing services or feelings of judgement that led to disengaging with services. This did not appear to be a clinical versus non-clinical staff split, instead spanning across various services.

This lack of cohesion further complicated challenges of identifying palliative care needs in PEH. One point of difficulty was ‘getting other HCPs to see past chaos and identify that these patients are palliative’ (clinical nurse specialist in palliative care). This barrier was described by respondents as frustrating, particularly where patients with complex or palliative needs were repeatedly dismissed by staff or services due to using substances.


Gaining sufficient funding for initiatives was challenging. Some faced this before initiatives even commenced; they were unable to secure funding, sometimes even after successful pilots proved the work’s potential impact. Alternatively, respondents reported being able to get small amounts of short-term funding but encountering challenges when seeking long-term funding to sustain initiatives. Consequently, initiatives were cut short or forced to decrease their reach and ultimately impact. Lack of funding also led to the inability to employ adequate staff to deliver initiatives within services. Where funding was successful, this was often for a fixed term, limiting the impact staff could have within a role and challenging the sustainment of any positive changes made as a result of the initiative.

Staff capacity

A frequent and related challenge was the capacity of staff to conduct initiatives that were often in addition to their everyday roles: ‘[we have to] fit it in around the day job!’ [palliative care doctor]. Oftentimes, healthcare staff found it difficult to dedicate non-clinical time to initiatives, particularly those that required considerable admin (ie, liaising with other services and following up on ‘loose ends’). Time was also an issue for training initiatives: clinical professionals struggled to plan sufficient ‘off-ward’ time to attend and engage with training. These time and capacity pressures were reported to be further exacerbated by the pressures faced during the COVID-19 pandemic. Where initiatives involved regular teamwork, challenges were faced ‘navigating the demands of different peoples roles’ (homeless palliative care coordinator).

Equipment and facilities

Challenges surrounding appropriate equipment and facilities spanned two main areas. The first pertained to the delivery of palliative care in hostel settings, specifically regarding the administration of medicines where carers and hostel staff did not have the qualifications or facilities to do so. For example, respondents reported challenges in using syringe drivers within a hostel setting. Second, challenges were faced regarding controlled drug use. Staff expressed concerns about where and how to safely store controlled drugs within their hostel (‘oramorph prn was difficult’ (registered nurse—inclusion health based within a hostel)) and stated that they lacked the facilities and knowledge to safely support controlled drug use.

Reaching and engaging communities

The final challenge faced was ‘being able to reach everyone’ (registered nurse—inclusion health). Initiatives were often halted or delayed, as both initially engaging PEH and then maintaining engagement with services proved difficult. Respondents from healthcare settings suggested some potential reasons for this, including fluctuation in patient attendance at healthcare services due in part to substance use, patients’ perceptions of their need for support, issues of trust in services and lack of identification of palliative care needs.

This post was originally published on https://bmjopen.bmj.com