Martlets is working in collaboration with the SCFT Community Homeless Team to teach key workers about palliative care, so they can better support those homeless and vulnerably housed at end-of-life. Senior Staff Nurse Helen Lyons is leading on the project for Martlets. She explains how local organisations are working together to help this vulnerable client group.
The focus of this year’s Dying Matters Week (10 – 16 May) is the importance of ‘a good place to die’. For many people with a terminal illness, their wish is to spend their last days in the comfort of home. Or if need be, to be cared for at a hospice. However, for those who are homeless or in hostels, end-of-life can often be a desperately lonely and traumatic experience.
Estrangement from family and mental health issues may also make pain and illness feel more intense for homeless people.
“Research by Crisis in 2012 revealed the average age someone on the streets will live to is just 47,” says Helen. “The research shows that organ failure affects homeless people more than the average population – heart, lungs and liver. It accounted for almost half of all homeless deaths compared with around a third of the general population. This is because it’s skewed by things like alcoholism, Hepatitis C and other illnesses that homeless people are more susceptible to.
There have been improvements more recently. Locally there is a Liver Specialist Nurse who has been engaging with those who are homeless and vulnerably housed. This has meant that more homeless people are getting themselves tested for Hepatitis C and having treatment if positive. It has helped reduce some incidences of liver failure due to Hepatitis.”
Reducing stigma and improving end-of-life care for our homeless
“It’s important to reduce the stigma and misinformation around how people end up living on the streets,” says Helen. “These people are vulnerable and have often had traumatic lives. They may have had to cope with mental health illness; complex trauma and behaviours resulting from repeated trauma and abuse experienced in childhood. Rented accommodation is not always very secure in this country.”
In 2016, the Care Quality Commission published a report addressing inequalities in end-of-life care. The following year, Helen was completing the last module of her nursing degree. She decided to complete an assignment about palliative care for the homeless; one of the nine marginalised groups cited in the report.
“I read the research and one thing that seemed to be helping was educating frontline staff; those working in hostels or housing projects, about palliative care,” continues Helen. “They are not healthcare professionals, but some of their clients are incredibly sick and have complex needs. They might have mental health issues, or be involved with substance misuse. That has an impact on their health. Services for conditions related to frailty are typically set up for those over 65. But early onset of aging and frailty is a huge issue for the homeless.
People are supported in recovery and to get their lives back on track in hostels. But the reality is that some of them won’t recover, with continued detriment to their physical health. There are barriers to homeless people accessing healthcare. Sometimes they may not want to engage with their health at all. For frontline workers not trained in healthcare this can be stressful. Consequently, symptoms may not be recognised so are less well managed. If someone is approaching the end of their life at a relatively young age, it may be difficult to recognise.”
A year-long grant-funded project
Martlets successfully applied for a grant from the Masonic Charitable Foundation to extend the reach of hospice care. The funding is to support people with end-of-life care needs who are homeless or vulnerably housed. Helen is the lead nurse on the project:
“The grant is for a year-long project. Every Wednesday me and Caterina Speight deliver teaching on palliative care to key community workers who work with the homeless. Caterina is clinical lead for the Integrated Primary Care Team and SCFT Homeless Team. There are also two clinical nurse specialists from Martlets who take turns to join me – Leila Chinehasha and Kate Thompsett. They have specialist knowledge about delivering palliative care in the community. Specifically, they contribute by informing frontline staff about Advance Care Planning; they share personal experiences and answer questions on concerns such as welfare funerals.”
What Martlets is doing to help
Helen has been developing connections with community organisations across the city. Together they have completed a pilot study at Glenwood Lodge and Phase One hostels.
“It’s multi-agency working across the city and is very much a joint effort,” says Helen. Collaboration is key because this client group can have different specialities involved with their care due to their complex needs. Collaboration is key in providing holistic palliative care.”
Caterina works closely with the homelessness GP surgery (ARCH) at Morley Street in Brighton. The surgery has around 70% of the city’s homeless people registered there. But some may not engage with their health regularly. The SCFT Homeless Team supports GP surgeries across Brighton and along with GPs will visit clients in their supported accommodation. Caterina is also involved in the teaching and helps frontline workers to recognise if a homeless person’s health is deteriorating.
“Daily contact between frontline staff and their clients is vital, especially if engagement with healthcare services is sporadic,” adds Helen. “We encourage early referrals to the SCFT Homeless Team for palliative care support or the client’s GP. They can then refer to Martlets for additional specialist palliative care support if needed. This happens quite often due to their complex needs. Our medical staff at Martlets may collaborate with their GP in prescribing, particularly for pain relief.”
Currently, Helen is delivering the teaching via Zoom or Teams video conferencing. She is planning to record some teaching sessions so they can be made available to frontline staff ongoing.
A holistic approach to care
“End-of-life care for those who are homeless is a huge challenge,” adds Helen. “We teach key workers about the importance of a holistic approach to care; the mental and social aspects are crucial as well as the physical. Research from Dr Caroline Schulman at University College Hospital London, and St.Mungo’s homelessness charity, showed ‘person-centred’ care is really important. They found that ideally it worked best to have care-plan meetings in the setting where the client was temporarily housed. This helped to reduce any stigma and to give all involved an appreciation of their client’s living circumstances. It also helps frontline staff feel more supported. This is our aim in Brighton with the SCFT Homeless Team arranging such meetings.”
Increasing numbers of homeless people have been supported by Martlets over the years.
“Sometimes they have been cared for on our inpatient unit,” says Helen. “But more often our clinical nurse specialists have provided hospice care out in the community. Caterina is involved with several other agencies across the city to see how we can best deliver end-of-life care. This needs to take into account a person’s preferred place of care; they may wish to stay in their hostel accommodation, even though their health may be deteriorating. Multi-agency working across the city now includes teaching about end-of-life care. We hope this will help this vulnerable group to live as well as they possibly can; so they receive the best care possible all the way through to end-of-life.”