Impact Report – Homelessness and Learning Disabilities

All the hospices identified significant barriers that prevented people with learning disabilities and people experiencing homelessness from accessing palliative and end of life care. The grant funding enabled them to address this gap. 

For many hospices, this was part of a larger programme of work to widen access to services. For some it also linked in with their local authority’s strategy for promoting equity of access.

For these projects to succeed it was vital for hospices to work in partnership with other agencies and services. Several hospices were able to build on existing links while others worked to form a network from scratch. All hospices highlighted the importance of being proactive, persistent and making time to build and maintain relationships.

Collaboration happened across all levels. Frontline staff had regular multidisciplinary team meetings to discuss patient care while senior managers attended strategic meetings with wider stakeholders. St Francis Hospice, for example, became a member of the local Housing Steering group focussing on homelessness and rough sleeping, and worked with local health trusts to develop strategies to support homeless people being discharged from hospital and to reduce attendance at A & E.

“Collaboration at a senior level, as well as within multi-disciplinary teams tasked with caring for individual patients is absolutely critical to ensuring the successful development of any initiative that aims to make a community wide change.”

- St Clare’s Hospice

In some areas, there were already a range of services to support people with learning disabilities and people experiencing homelessness, but these were not well co-ordinated and there was limited provision for palliative care. Through the grant funded projects, hospices were able to improve the way services work together. For example, several hospices worked collaboratively to develop clear referral pathways for people in need of palliative an end of life care.

St. Francis Hospice was so successful in bringing services together that their team “became the ‘go to’ agency to contact and ask for information”.

The grants enabled hospices to raise awareness of palliative and end of life care among local providers. As well as working with services for people with learning disabilities or people experiencing homelessness, projects were promoted to primary care services such as GP surgeries.

Hospices offered training sessions and workshops (online and face-to-face), set up networks and communities of practice, attended staff meetings and invited other services to visit the hospice. Garden House Hospice, for example, offered regular “Tea and Tour” sessions. Feedback from the sessions shows they had a positive impact.

“Workshop evaluations showed that staff supporting people who are homeless felt more informed of our Hospice services and have an increased confidence in talking about future and end of life care with clients.”

- St Peter’s Hospice

“It changed my perspective on palliative care - it is not all doom and gloom and morbidity, rather a way to make the absolute best of an individual’s life.”

- Professional attending training run by St Francis Hospice

“[It] helped us to know how to speak with clients regarding end of life” 

- Professional attending training run by St Francis Hospice

It was also important to improve service user’s awareness and understanding of end of life care. The grant enabled hospices to use a range of methods to do this:

• Producing ‘easy read’ information about palliative and end of life care
• Supporting people to watch videos on the hospice website which aim to demystify palliative and end of life care
• Helping people use the hospice website to find out about the full range of hospice services
• Working with individual patients to assess and support their needs
• St Wilfrid’s hospice created an interactive virtual tour with signing in Makaton.

St. Leonard’s Hospice explained how they supported a young person experiencing homelessness with end stage liver disease to understand and access palliative care:

“I was really scared when they said they were referring me to a palliative care nurse because I thought that meant that I was going to die soon. After meeting Charlotte I feel a lot better and knowing that I have the support there makes it feel less scary…I feel less afraid because of the way Charlotte has explained things to me.” 

- Service user at St. Leonard’s Hospice 

All the hospices wanted to improve their own knowledge and skills around working with people who have learning disabilities or are experiencing homelessness. Working with specialist providers gave them the opportunity to do so.

“Providers can share their expertise and develop an understanding of how each service works to improve overall service provision”

- Hospice of the Good Shepherd

Several hospices set up formal training for their staff, using online, face-to-face and hybrid learning. St Clare Hospice held study days with Royal College of Physicians credits, which helped ensure the training was prioritised by clinical staff. Willen Hospice arranged for clinical professionals to shadow a Learning Disabilities Nurse (and vice versa). 

“[We were] reminded how complicated and complex people’s lives can be. For someone who is homeless, they often have greater priorities than their health needs.”

- Participant in training, St Peter’s Hospice

For training and awareness raising to be successful, it needs to be ongoing. Having the grants meant that hospices were able to develop a programme of activities. St. Francis Hospice, for example, arranged several learning events about homelessness. This included 10-minute ‘tool box’ talks, a quiz about homelessness, an interview with a homelessness key worker, and a debate about the challenges of admitting someone experiencing homelessness to the inpatient unit (IPU). Willen Hospice noted the importance of having refresher training and developed an online module, which can be used in the future.

Several hospices recognised the importance of developing a culture of inclusion amongst all their staff, not just those directly involved with the project. St Clare Hospice highlighted the importance of training the staff on their 24/7 palliative care advice line. Garden House Hospice went a step further, including trainee clinicians in their training:

“The importance of palliative support to those identifying as homeless has been taught to all new Hospice staff, including palliative medicine registrars, GP trainees, paramedic trainees and nursing trainees on placement at the Hospice”

- Garden House Hospice

Most of the projects had positive impacts, which extended beyond the scope of the grants programme. Willen Hospice reported that they are now better able to support anyone with learning disabilities (not just patients but carers, friends and relatives too). In fact, the skills learned through the project will benefit everyone who encounters the hospice:

“It’s not just people with learning disabilities, but everyone who is in our care will benefit from the skills [we] learnt…particularly around communication skills, assessment skills and the importance of having one point of contact.”

- Willen Hospice

At St Francis Hospice, seven members of staff slept out during Homeless Person’s week in October 2021. This helped them understand the real situation experienced by rough sleepers, but also raised awareness among hospice staff and the local press. It even inspired the London Borough of Havering’s Housing Department to take part in a ‘sleep out’ in a public car park. The local press coverage helped highlight the challenges faced by homeless and vulnerably housed people in the community, which led to several offers of help and a substantial donation to a local organisation that provides food and clothing.

The grant gave some hospices the opportunity to work more collaboratively internally, bringing staff from different teams together for training and service delivery.

Some hospices co-produced the service, working together with service users to make sure their needs were met. This helped empower participants, improving their confidence. Some of the people from lived experience group at St Giles Hospice were invited to join other similar local groups, and some even won a national award:

“An unanticipated surprise was the extent to which James Channon and Simon Cox grew into their roles. Initially, James and Simon, who both have lived experience of learning disabilities (LD), were very quiet at meetings. During the project period, however, they grew in confidence and were key contributors to the delivery of our LD Champions training. Their participation led to them being presented with a ‘One to Watch’ Award at the national Palliative Care for People with Learning Disabilities (PCPLD) Network Linda McEnhill Awards. These awards are given to people, teams or organisations who have made a positive difference to the experience of death, dying and bereavement of people with LD.”

- St Giles Hospice

James and Simon were not the only people to win an award as a result of the grants programme. Mary Stevens won Hospice UK’s Tackling Inequalities award for 2021, St Gemma’s Hospice won Nursing Times Team of the Year 2021 and Willen Hospice won a CHKS award.

By improving care for people with learning disabilities and people experiencing homelessness, all the hospices have been able to take some pressure off their local health system. If people are getting the care they need, when they need it, they are less likely to need to attend A and E or be taken into hospital. Hospice of the Good Shepherd gave the example of one patient, who was being admitted into hospital as frequently as once a week before receiving support from the Hospice Homelessness Lead:

“Since their discharge, now several months ago, they have not had one admission to hospital. This has meant no ambulances, no tests in A and E, no occupying a hospital bed and all of the accompanying costs and time savings”

- Hospice of the Good Shepherd

All the projects needed key people to keep momentum. This involved having a project leader/facilitator and champions across organisations. Some hospices experienced challenges when key members of staff left and the project needed to be handed over to new people.

Sometimes a change of management at a partner organisation resulted in resistance to the project. Hospices worked to overcome this, helping new colleagues to understand the benefit of the project for clients and service users.

Having the grant funding gave hospices an extra impetus to push the project forward and overcome these challenges.

The coronavirus pandemic had a significant impact on all the projects, particularly because of the restrictions on face-to-face working. This made it harder to work with patients and build relationships with partners. However, all the hospices found alternative ways of working to enable the projects to continue.

Some hospices were surprised at the amount they were able to achieve by moving services online, and some were able to reach more patients than they had originally anticipated. Others were not able to meet the objectives of their project within the original timescales, but continued to build relationships and develop skills:

“As this project was severely delayed by COVID-19, we didn’t get to the point where we delivered palliative care to a person with a learning disability. However skills/knowledge gained and relationships built will be valuable for the future patients.”

- Willen Hospice

Niamh Brophy from St Ann’s Hospice wrote a blog on the Hospice UK website along with Alison Colclough from St Luke’s Hospice (not part of this funding programme). They shared some of the challenges of delivering end of life care to people staying in hostels during the pandemic.

Several hospices reported challenges of collecting, collating and accessing data to support, monitor and evaluate their project. Some said that, if they were to do the project again, they would spend more time at the start to gather accurate data and develop a more robust recording process.

This was particularly challenging for the projects supporting homeless and vulnerably housed people. Without knowing how many people there are who are experiencing homelessness and living with palliative and end of life care needs, it is difficult to plan services and quantify how many people are benefitting from the project.

However, all the hospices have been able to demonstrate the benefit of the projects to patients and professionals.