Urgent Need For End Of Life Care Volunteers To Play A Critical Role In Our NHS Say Helpforce And Marie Curie

Almost three in every ten patients in hospital are in their last year of life1, yet many of them will die alone on a busy ward, spend long periods on their own, or have little company in hospital or at home. This is set to change with a new collaboration between Helpforce, a charity inspiring NHS Trusts to work with more volunteers in innovative roles, and terminal illness charity Marie Curie.

With funding from The National Lottery Community Fund, The Peter Sowerby Foundation, the Welsh Government, and Marie Curie they are launching seven innovative projects across England, Scotland, Wales and Northern Ireland, which will mean more end of life care volunteers working in hospitals and in the community to provide much needed extra support to patients, families and friends, and staff.

The seven projects: The West Hertfordshire Hospitals NHS Trust; The Northern Trust in Northern Ireland; NHS Borders in Scotland; York Teaching Hospital NHS Foundation Trust, and three projects in Wales, Aneurin Bevan University Health Board, Powys Teaching Health Board, and Hywel Dda University Health Board, will embed end of life care volunteers in hospitals and in the community. The volunteers will be trained to support terminally ill people and their families, and be there for them at a very difficult time. They will provide emotional and practical support, companionship and alleviate social isolation. They will ensure fewer patients die alone, bring comfort and help relieve the stress and guilt that staff sometimes feel when they can’t be with dying patients as much as they’d like.

Mark Lever, CEO Helpforce, said:

“There is significant untapped potential for volunteers to play a greater role in the NHS, and to better support patients, families, staff and services. The reality for some terminally ill patients is that they will spend a lot of time alone, and face the devastating prospect of dying alone on a hospital ward. Others may have partners or family and friends, but they can often feel overwhelmed and isolated. This is why we are excited about launching these seven projects with Marie Curie. Training more volunteers to support people at the end of their life and their families, will be a positive change in many people’s lives.”

Julie Pearce, Chief Nurse and Marie Curie Executive Director of Quality and Caring Services said: “Bereaved families repeatedly tell us that more needs to be done to improve the experience of dying patients and their loved ones. At the same time, we live in a society where we don’t talk readily about death and dying, and this can have a profound impact on family members who are not well prepared or clear about what is important to the person who is dying. It can create stress and anxiety for everyone involved, including the professionals who support them.

“We should be more open to looking at ways of supporting each other to care for people well. Our own services show how well-trained volunteers supporting patients and families in different care settings can enhance the holistic support provided, as well as reassure staff that their patients are getting the emotional, practical and compassionate support they need and deserve.

“Caring for someone and their family during their final weeks and days of life is both a privilege and a challenge. There is only one opportunity to get the end of life right for people and when it doesn’t go well it can affect a family for many years.”

John Knights, Senior Head of the UK Portfolio at The National Lottery Community Fund, said: “Helpforce recognise the great impact volunteering in hospitals and the community can have, and now with Marie Curie and thanks to National Lottery funding, volunteers will support terminally ill people and their families across the UK. By bringing people together this project will ultimately help reduce isolation and loneliness whilst providing emotional and practical support.”

Mandy Preece, volunteers for a small charity connected to the Royal Bournemouth and Christchurch Hospital Trust. She said:

My journey toward volunteering was initiated by the deaths of three people in fairly quick succession – my dad, my mum and one of my best friends. And, afterwards, it got me thinking, they had family, they had support and visitors, but what if you had no-one? What if you were facing your death alone?

So, in 2011, I began volunteering on the ward of a palliative care unit in Christchurch Hospital in Dorset. I volunteered in the day centre, and my role involved lots of listening. As I got to know the patients, I began to visit them when they were on the ward for symptom relief or because they were facing their last weeks. Eventually, I asked the Trust if I could volunteer on the ward, in the evenings, and sit with patients who were lonely, low in mood or dying alone. At first there was reluctance – volunteers don’t do this! But there was one nurse who championed me and eventually I was given a 6 month trial. That was eight years ago, and we now have a team of 15 end of life volunteers for a 16-bed unit. It means every night throughout the year is covered.

This quote from someone I met on my first ever week on the ward says it best. A 96 year-old lady who had very few visitors. She was bright as a button and a total inspiration. We talked together for hours. On the last time I saw her, she said “Promise me you will never stop doing this – it is so needed. You have made such a difference to my time here. Promise me there will always be volunteers wishing to sit with those of us facing the end.”