While our nurses, healthcare assistants and doctors are the daily frontline ambassadors for St Luke’s compassionate and holistic end of life care, behind the scenes another small and highly skilled team are helping patients and their loved ones deal with the intense emotional pain and personal hardships a terminal journey can bring.
Recently renamed the Patient and Family Support Service to better reflect what the team does, this band of social workers, support workers, students and trained volunteers are multi-faceted champions, making sure those in distress are offered the help that’s right for them.
It can be overwhelming when someone learns they have a limited time to live, not just for the person themselves but for all those closest to them. At the heart of everything the team does lies the desire to make things just a little bit better for the patient and their family, amid the sadness, pressured relationships, physical constraints, mental health problems, past trauma, learning disabilities, substance abuse or financial troubles they may be facing, while also upholding their legal rights and protecting their safety.
The team’s highly experienced social workers are service manager Helen Koffi-Young, Danielle Brown, Emma Hancock and newcomer Sarah Bedaton. They are joined by social and bereavement support worker Sue Martin, children and family support worker Lisa Carter and a core of around a dozen amazing volunteers, trained in befriending and bereavement support skills. Together they are a consistent and inclusive St Luke’s presence, following people wherever their journey takes them – from hospital or home to nursing home or the hospice specialist unit.
“A terminal diagnosis makes a massive impact on the whole family and we deal with a lot of mental distress. We try to be preventative and look at people’s strengths and current support, then what support the person feels will be useful to them, what support we can give and what may be there in their network already,” explains Emma. “Recently we have observed a big impact from Covid and people getting a late diagnosis. This can impact on people’s level of emotional distress and can at times lead to crises in their mental health.
“People are not just their illnesses. The illness is something that happens to them. It’s our job to ask and really understand what matters most to that particular person and look at what their goals are, big or small. How, for example, could the day be made slightly better for them?
“We give people a voice and let them know they are heard. We let them talk about their anxieties and fears without judgment. We use active listening and empathy, helping people process their feelings about what has happened in a safe space. We use counselling skills and other therapeutic approaches, but we are not a counselling service, nor are we there to replace social services but work alongside them.
“We are involved in training and increasing awareness of safeguarding for adults and children, when there is abuse, neglect or self-neglect, and we are there as a consultancy service to support St Luke’s doctors, nurses and healthcare assistants.
“We work with social services to support people who may be subject to or at risk of abuse or neglect working to support and empower them and put them at the centre of decisions about their lives.”
At any one time the team can be dealing with as many as 150 people – patients, carers and the bereaved – building trusting relationships that can go on having a valuable impact in their most difficult days.
Sometimes it’s simple actions that make a big difference. For example, if someone has received a terminal diagnosis and doesn’t have family or friends close by, having one of the team’s befriending volunteers visit once a week for a chat, telephone regularly or take them out for coffee can help them feel they are not alone as they approach the end of life.
However, many of the situations they face are extremely complex. Even if someone’s troubles initially look straightforward, there can be a deep layer of issues beneath the surface that needs the expertise and experienced input of the team’s social workers and support workers.
For patients, the emphasis is always on understanding what is important to that person and their family. There’s an urgency to try and address matters that are causing the most anxiety, whether emotional or practical, and they work closely with other St Luke’s teams, also connecting and signposting to other agencies when it’s appropriate, such as the CAB for financial issues.
“We look at someone from the point of view of their entire life, their environment and their close relationships, and make sure they are empowered and know they have choices. We look at what can they do for themselves, physically and emotionally and try to build on their own strengths, while assessing the level of risk involved,” says Emma.
“For instance, getting themselves washed and dressed might be painful and tire someone out, but if they have a little help with the ordinary things, maybe it can free up that time and energy for something they enjoy doing.
“Sometimes a patient will have been the sole carer for someone with learning disabilities or mental health issues. Is there someone else who can look out for them? Our team have worked with many people who are looking after an adult child and worked with social services to get the support they are going to need.”
Emma, Danielle, Sarah and Helen keep an acute eye on the law and people’s human rights, especially legalities around mental health and mental capacity, elements that often come into play when deciding where someone should be cared for.
“The Mental Capacity Act is used when someone is not able to make a particular decision for themselves due to issues with their cognition,” says Helen. “It’s about upholding people’s rights while balancing their safety. If someone wants to go home, we assess if it is safe for them to do so. Is there a risk that they will fall over? Can they call for help? We always look at ways that we can try to minimise risk to enable people to have their wishes met, without being overly restrictive. For example, if someone has advanced dementia, is there someone who can support them to remain at home? We look at what we could do to get that person what they want. And if we can’t make it safe for them, we help to explore other options.”
Sustaining carers is a hugely important part of the team’s work. “It’s really important we listen to carers about their needs, provide emotional support, help them with difficult conversations around care and getting support packages from adult social care and the NHS,” adds Sarah.
The demand for bereavement support has significantly increased. When someone close has died or is going through the final stages of life, a period of bereavement support from a staff member or bereavement support volunteer can help family members with the initial stages of grief, or boost their strength to cope a little further down the line when the reality of the situation has sunk in.
“We are often working with people who are in a crisis and facing the most difficult time in their lives. We try to give continuity in bereavement support, with three initial sessions before we review their needs, and we can provide up to six where needed,” says Sarah.
Sometimes the team will need to refer the person on to an outside voluntary organisation for ongoing support, or to specialist mental health services if their distress deepens, working with partners in the community to get the right level of support for people’s individual needs.
When it’s a child or young person affected by bereavement, they will try to begin supporting them before their loved one dies, helping them to make and hold onto unique memories of that person through St Luke’s own Patches initiative. If it’s their parent, grandparent or carer that St Luke’s is looking after, they will work with their school or nursery and sometimes CAMHS NHS mental health services, to make sure there is a solid network around them and plenty of support and advice for whoever will be caring for them, especially if a child has extra needs because of a learning disability or any other additional needs.
Patient and Family Support Service may be a more fitting name for the team, but no title can adequately describe the magnitude of what they do on a daily basis, which also extends to best practice and how services are developed, teaching inside and outside St Luke’s.
Helen says: “It is a privilege that people let us into their lives and we all value the precious time they give us. I am really proud of the social workers, support workers and volunteers. They all make such a difference in the work they do and without fail are skilled, compassionate, empathic and effective advocates for the people they support.”