Hostel toolkit helping homeless people facing death

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Researchers have launched an online toolkit to help hostel staff identify and support homeless people who are  facing death.

www.homelesspalliativecare.com will give hostel staff caring for terminally ill homeless patients high quality information and advice with guides, tools and activities to help plan care and provide support.

The free resource was created by a partnership between Pathway, Marie Curie Palliative Care Research department (UCL), St Mungo’s and Coordinate My Care.

The group’s previous report, published in Palliative Medicine, revealed that hostel staff often care for homeless people with terminal conditions and complex needs, despite not having palliative care training. They face huge emotional and physical burdens with minimal support and limited resources.

In response, the team developed a two-day training course for hostel staff, recently published in Nurse Education Today. The course was tested with staff at London homeless hostels, and improved their confidence and knowledge.

However, the team’s work has shown that training sessions aren’t enough, the next stage of the project will explore new models of training and support.

Dr Briony Hudson, Marie Curie Palliative Care Research Department at UCL, said:

“The deaths of homeless people are often perceived as sudden, untimely and undignified. This can be very traumatic for everyone involved, especially hostel staff, as they are often left to support people who are very unwell, even when they have high care needs, due to a lack of suitable alternative places to live.”

“One of the reasons homeless people are dying without support is that they are not recognised as having a terminal illness. Throughout this toolkit we suggest that concern about a client’s deteriorating health should act as a trigger for action, rather than waiting for a palliative or terminal diagnosis. We hope this resource will be helpful in supporting homeless people.”

Alex Bax, Chief Executive, Pathway, said:

“Pathway is delighted to have hosted this hugely important work, helping to improve care for seriously ill homeless people facing the end of life. We hope this new toolkit will help the many services that work with homeless people to at least improve the quality of care and support provided to people who have had faced a traumatic and often foreshortened life.  At the very least a civilised society should seek to provide dignity in end of life for people who have had so little before.”

Professor Bee Wee, Consultant in palliative medicine at Oxford University, commented:

“I’m absolutely delighted to welcome this online resource, which supports staff working to support people who are homeless who are entering the last stages of their lives. It is a truly valuable contribution to our collective efforts to improve palliative and end of life care for all.”

The research was funded by The Oak Foundation and hosted by Pathway,  with support from Marie Curie,  St Mungo’s and Coordinate My Care. The online toolkit was funded by a grant from UCL Innovation and Enterprise.

Click here to find out more about Pathway’s work on homelessness and palliative care.


Additional quotes

Simon Jones, Director of Policy and Public Affairs at Marie Curie, said: “Dying in familiar surroundings, in comfort, with dignity and with those we love and who love us is what we want for our own deaths and those close to us.  Sadly, very rarely is this something that someone who is homeless will experience. There is no reason why a homeless person should not have compassionate care at the end of their lives and a dignified death – this resource brings us one step closer to making this happen.”

Howard Sinclair, St Mungo’s Chief Executive, said: “It’s now a decade since St Mungo’s began the first palliative care service in the homelessness sector, working alongside Marie Curie. We recognised a need to support clients to make informed choices about their care, as well as supporting staff and other clients affected by someone close to them approaching the end of their life.

“This new toolkit brings together essential expertise from across the homelessness and health sectors, ensuring people approaching the end of their life will be treated with the dignity and respect they are due. I hope this resource is in itself a legacy to those who have died, and to what we have learnt from them about loss, bereavement and improving our care for the future.”

 


Notes to Editor

About the research

  • The objective of the research was to pilot and evaluate the impact of a two-day training course for hostel staff around supporting homeless people with palliative care needs.
  • 21 frontline staff from two London homeless hostels took part in the training – pre and post training data was collected.
  • The training was found to be useful for improving knowledge, confidence, openness and work-related stress. However, one-off training isn’t enough.
  • In response, the team developed an online toolkit to share resources and information which can be accessed at homelesspallaitivecare.com
  • Next steps of the project include building communities of support for frontline homelessness and health staff – exploring ways to embed training into routine practice for staff by developing links between local palliative care, primary care and homelessness services to better support staff consistently and promote multi-disciplinary working.

About Pathway

Pathway works to improve healthcare for homeless people. The charity has helped the NHS to create 11 homelessness teams in hospitals across England, supporting over 3000 patients every year. Pathway also develops models to facilitate improvements in patient care, carries out research in new and developing areas, provides training for healthcare professionals and supports specialist commissioning. Pathway also hosts The Faculty for Homeless and Inclusion Health, a network of over 900 health and social care professionals providing support for homeless people, vulnerable migrants, gypsy and traveller communities and people in the sex industry.


About St Mungo’s

St Mungo’s provides a bed and support to more than 2,600 people each night who are either homeless or at risk of homelessness. As a charity and housing association, we work to prevent homelessness, through more than 250 projects including emergency services, supported housing, specialist physical and mental health services and advice, skills and work services. We believe everyone should have a place to call home and be able to fulfil their hopes and ambitions.


About Marie Curie

Marie Curie is the UK’s leading charity for people with any terminal illness. The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance.

Marie Curie employs more than 2,700 nurses, doctors and other healthcare professionals, and with its nine hospices around the UK, is the largest provider of hospice beds outside the NHS.

The Marie Curie Palliative Care Research Department at UCL is an internationally recognised centre of research with a team of over 20 full-time researchers. The department receives core funding from Marie Curie and also undertakes research funded by the National Institute for Health Research (NIHR), the Alzheimer’s Society and other research funders. The department has particular research strengths in the areas of palliative care for people with dementia, prognostication in advanced cancer and the management of cancer-related fatigue.

‘A Second Class Ending’

CQC and Faculty paper highlights ways to improve end of life care for homeless people

An image of a shadowy bed, with half light from a windowA report released today by the Care Quality Commission, drawing upon research from the Faculty for Homeless and Inclusion Health, raises concerns that homeless people are struggling to access the care they need as they face the end of their lives.

People whose needs are the most overlooked are often those who are least able to advocate for themselves. A Second Class Ending highlights problems including fragmented support, inadequate services and few genuine options for homeless people in their last weeks and days of life, leaving many without the support they need.

However it also highlights numerous examples of good practice, where health and social care providers, palliative care specialists and homelessness staff have worked together to meet the significant needs of people facing this situation.

Dr Briony Hudson, Pathway Fellow and Research Associate at Marie Curie Palliative Care Research Department at UCL, comments:

“Enormous pressure is currently being placed on hostels who struggle to support people with very poor health, due to a lack of alternatives. Options for place of care and multidisciplinary working are key to improving quality of life for people experiencing homelessness, especially towards the end of their lives. We’re delighted to see the examples of good practice and joint working highlighted in this report, and there are many lessons to be learned from them.”

Stan Burridge, Pathway’s Expert by Experience Lead, was homeless for almost 20 years. He recently documented his experience of trying to see a GP whilst he was homeless for the BMJ. Stan said:

“Seeing a GP who understood homelessness was the first step to getting my life back on track. Without him, I think my health would have continued to the spiral out of control, and I could have ended up as one of the many homeless people who die an early death.”

Read the CQC report

Homeless Patients Are Dying Without Support

Research published today reveals that homeless people who are terminally ill are falling between cracks in services, and not able to access the same level of support as others.

Researchers from Pathway, Marie Curie Palliative Care Research Department at University College London (UCL), St Mungo’s and Coordinate My Care worked with homeless people and care professionals and found that many homeless people who may be approaching the end of their lives are living in homeless hostels.

The study is the largest of its kind and the first to describe the lack of appropriate services for homeless people in the UK, from the perspectives of homeless people and those supporting them.

It showed that hostel staff often end up caring for some of the sickest homeless people, despite not having the palliative care training or support to do so.  As a result, huge burdens are placed on hostel staff who do their best to manage with minimal support and very limited resources.

One hostel staff member commented:

“At least three times a shift we check she’s okay.  It’s hard … particularly on weekends and nights when we only have two staff … it’s a big hostel … you really can only do so much … this isn’t an appropriate environment, but it’s the best we have”

Dr Caroline Shulman, Pathway and Marie Curie Palliative Care Research Department, UCL, who led the research, said:

“Hostels provide temporary accommodation. They are not designed to meet the needs of seriously or terminally ill residents. Hostel staff often struggle to secure additional support from social services or palliative care services for their residents who have complex problems.”

Many homeless people die young from conditions such as advanced liver disease, often complicated by mental health problems and/or drug and alcohol issues. There are differences in the type and amount of support available for this group across London, with some innovative attempts to deal with this extremely challenging problem. However the researchers found that overall, homeless people with advanced ill health rarely receive adequate care and support in the community. This results in repeated unplanned and emergency hospital admissions in the last months, weeks or days of life, which can be very distressing.

One of the participants with experience of homelessness commented:

“There’s been a few guys that were in hospital, told they were dying …. They didn’t want to go to any hospice, they didn’t want to … stay in hospital, they wanted to die in the homeless hostel”

The research calls for urgent action to improve collaboration between health, housing, social services and the voluntary sector, with extra support for hostel staff. It also makes recommendations for a specialist health hostel, with staff that not only understand the complex needs of homeless people but can also offer adequate 24-hour support for people with serious illnesses, including those who are dying.

As one of the hostel residents observed: 

“You’ve got to walk past those people.  They half block the stairwell, you have to edge your way past.  It’s kind of … in your face.  Erm, yeah, it becomes part of the furniture.  But it disturbs me as a person…”

Professor Steve Field, Chief Inspector of General Practice at the Care Quality Commission, said: 

“As a GP I have seen how the lack of appropriate and sensitive services can mean that homeless people are denied the compassionate healthcare, dignity and respect that they deserve at the end of their lives.

“This research makes it clear that by working together, healthcare services and the wider system – such as housing, social services and the charity sector – have a vital role to play in improving the quality and co-ordination of care for homeless people as they reach the end of life. Everyone has the right to safe, high-quality, and compassionate health and social care. Through our inspections we have seen services that are providing outstanding care to people who do not have secure housing but it takes strong, responsive leadership and dedicated staff.

“In the coming months CQC will be publishing a detailed report making recommendations on how we as a society can meet our responsibility to the most vulnerable people in our communities who are currently being let down at a time when they need help and support the most.”

The research, published in the journal Palliative Medicine, was funded by the Oak Foundation and supported by Marie Curie, Pathway and Coordinate My Care.

Click here to download the paper from Palliative Medicine (free).

-Ends-

Notes to Editors

Case studies and interviews available on request.

Additional quotes:

Alex Bax, Chief Executive at Pathway, sad: “Pathway is delighted to support this ground breaking research. We knew that homeless people’s experience of care at the end of their lives was often poor, but this new study shows how all parts of the system working together could make things much, much better. The voices of homeless people and the staff who work with them come through loud and clear. Towards the end of life everyone wants to be treated with dignity, respect, kindness and compassion. And homeless people are no different.”

Simon Jones, Director of Policy and Public Affairs at Marie Curie, said: “The majority of people tell us that they wish to be cared for and die in comfort, where they normally live and surrounded by their loved ones. For most people, this means their own home. This important study highlights that for homeless people, home represents something completely different – a hostel, or on the street.  Everyone deserves compassionate care and a dignified death, regardless of where they normally live, or their personal circumstance.”

Niamh Brophy, Palliative Care Coordinator at homelessness charity St Mungo’s, worked on the research. She said: “People who are homeless do not gain access to palliative care until very late in their illness, if at all. Often their choices for care are limited, and their death is more likely to be perceived as sudden, untimely and undignified.

“In recognition of this complexity, St Mungo’s provides the unique service of having a dedicated Palliative Care Coordinator. My role centres around giving our residents with serious health concerns the opportunity to choose their treatment, the chance to reconnect with loved ones, and the possibility to die in a dignified, comfortable way in a place of their choosing.”

The Oak Foundation said: “We are pleased to support the research to improve end of life care for people who are homeless or vulnerably housed. This work is key to strengthening the links between the homelessness sector and health providers.”

 

About the research

  • Homelessness includes not only people who are sleeping on the streets, but also those in insecure or temporary accommodation such as hostels.
  • Participants were recruited across three London boroughs, Lambeth, Hackney and Westminster, selected for their high volume of both homeless people and homelessness services.  Frontline homelessness providers and health and social care professionals were recruited through the research’s team existing connections.
  • 127 participants took part. Over a third (n=39%) of the homeless participants had been homeless for more than five years; 86% reported having slept rough and 71% reported currently sleeping in hostels, most of the time.

recent CQC report acknowledged that people from certain groups in society, including homeless people, experience poorer quality care at the end of their lives and that more must to done to tackle the problem.

Key findings

  1. In London, appropriate services for homeless people with advanced ill-health are lacking. Facilities that can meet the physical and emotional needs of homeless people with advanced ill health, who may continue to misuse substances, are needed.
  2. There is currently a large emotional, and practical burden on hostel staff in supporting homeless people with advanced ill-health due to lack of appropriate alternatives. Homeless people, and those supporting them struggle to access the services required.
  3. There is a conflict between the recovery-focused nature of many services and the realities of health and illness for homeless people that creates a lack of comprehensive person centred care.
  4. Collaboration between health, housing and social services, the promotion of multidisciplinary working including hostel in-reach and greater training and support are urgently needed for professionals and those working with homeless people as their health deteriorates.

About the partners

Marie Curie – care and support through terminal illness

Please note – we are now called ‘Marie Curie’ (not Marie Curie Cancer Care)

Marie Curie is the UK’s leading charity for people with any terminal illness. The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance.  Marie Curie employs more than 2,700 nurses, doctors and other healthcare professionals, and with its nine hospices around the UK, is the largest provider of hospice beds outside the NHS.

For more information visit www.mariecurie.org.uk
Like us at www.facebook.com/mariecurieuk
Follow us on www.twitter.com/mariecurieuk

The Marie Curie Palliative Care Research Department at UCL is an internationally recognised centre of research with a team of over 20 full-time researchers. The department receives core funding from Marie Curie and also undertakes research funded by the National Institute for Health Research (NIHR), the Alzheimer’s Society and other research funders. The department has particular research strengths in the areas of palliative care for people with dementia, prognostication in advanced cancer and the management of cancer-related fatigue.

Pathway

Pathway works to improve healthcare for homeless people. The charity has helped the NHS to create 11 homelessness teams in hospitals across England, supporting over 3000 patients every year. Pathway also develops models to facilitate improvements in patient care, carries out research in new and developing areas, provides training for healthcare professionals and supports specialist commissioning. Pathway hosts The Faculty for Homeless and Inclusion Health, a network of over 900 health and social care professionals providing support for homeless people, vulnerable migrants, gypsy and traveller communities and people in the sex industry.

St Mungo’s

St Mungo’s provides a bed and support to more than 2,600 people each night who are either homeless or at risk of homelessness. As a charity and housing association, we work to prevent homelessness, through more than 250 projects including emergency services, supported housing, specialist physical and mental health services and advice, skills and work services. We believe everyone should have a place to call home and be able to fulfil their hopes and ambitions. www.mungos.org

St Mungo’s Palliative Care Service started in 2007, and since then we have

  • Provided more than 190 residents with end of life care support including bereavement support
  • Delivered training about homelessness and end of life care to more than 300 staff
  • Developed an online Resource packaimed at supporting staff working with people who are homeless
  • Forged greater links and partnership working with services such as a multidisciplinary working group set up to identify earlier on those residents whose health may be deteriorating
  • Partnered on collaborative research and training development with UCL, Marie Curie and Pathway

Coordinate My Care (CMC) 

Coordinate My Care is an NHS urgent care clinical service developed from the concept of a multidisciplinary digital end of life care plan to an urgent care plan for all vulnerable patients. CMC was established in May 2012 to address the need for patients to have integrated, coordinated and quality care. The CMC service is implemented successfully across the 32 London CCGs where it has provided quality improvements and a reduction in unnecessary hospital admissions. As of June 2017, 41,565 care plans have been created.

Palliative Medicine

Palliative Medicine s a highly ranked, peer reviewed scholarly journal dedicated to improving knowledge and clinical practice in the palliative care of patients with far advanced disease. It reflects the multidisciplinary approach that is the hallmark of effective palliative care. http://journals.sagepub.com/home/pmj