The early days of bereavement care

“I first came to Sobell House in January 1982. At the time, I didn’t imagine I would stay very long. My husband and I had just returned from living and working in Holland, and I saw an advert for a voluntary services coordinator. I’d previously worked with full-time volunteers in London, so I thought it might “tide me over” while I decided what to do next.

But once I began reading about palliative care, I discovered that someone I had studied alongside at university – same course, same year – had died at Sobell House. Her father had written a book about her experience. Reading it was deeply affecting and drew me in.

When I started, the hospice was very different. It was a small inpatient unit and there was no real Day Centre yet, just the beginnings of one. There were only two community nurses, and very limited social work support. What stood out quickly was that families formed close relationships with staff while their loved one was being cared for – and then, after the death, they would come back and quite literally knock on the door.

The nurses didn’t have the time to support them properly, and they felt awful about that. People were arriving distressed, needing help, and there was no structure in place to respond. That was the starting point for what came next.

My background was in working with volunteers and developing projects, and together with the Lead Nurse at the time, Ann, we began to think about how we could build more formal bereavement support. I wrote to hospices across the country – about forty of them – asking what they were doing. Almost all replied saying the same thing: it was a problem, they knew something needed to be done, but they didn’t yet know how.

We spent time at St Christopher’s Hospice, learning from what they were doing, and then developed our own approach. It was an exciting time, working in an area only just beginning to be understood.

What drove me was the sense that this work mattered – and that we needed to understand whether it was actually helping. From the beginning, we made it research-led. We secured funding, including a grant from Cancer Research, which allowed us to establish the service properly. I was encouraged to undertake a PhD, which helped build a stronger evidence base.

Over time, the bereavement service grew from supporting around a hundred people a year to several hundred. What we saw was that grief varies enormously. Many people needed only a small amount of support – reassurance and someone to talk to. Others needed more sustained help, sometimes over years. But most, with the right support, found their way through.

Alongside this, we began to recognise another gap: support for children. There were many young families connected to the hospice, and it became clear that children were often struggling to understand what was happening.

That led to the development of what became the children’s bereavement project, and eventually SeeSaw.

Interestingly, that work began almost by chance. I received a phone call from someone at the regional health authority who said they had £3,000 left in their budget and asked what we would do with it. I said we would research the needs of bereaved children across Oxfordshire. That piece of work became the blueprint for SeeSaw, which continues to support hundreds of children and young people each year.

Looking back, one of the strengths of both the bereavement service and SeeSaw was that they were never about one person’s vision. They were built collaboratively, grounded in research, and shaped by listening to families and each other.

Volunteers were central to everything we did, involved in almost every aspect of hospice life – on the ward, in the Day Centre, driving patients, offering companionship, even baking and bringing flowers. They helped create a sense that this was not just a medical space, but a community.

That was important, because at the time there was a great deal of fear around hospices. I remember being at a dinner party in the 1980s and, when I said where I worked, someone became so distressed they had to leave the room. People associated hospices with death in a stark way, and volunteers helped break that fear down.

For me, one of the most important parts of my role was bringing the perspective of the whole family into the hospice – not just focusing on the patient, but thinking about everyone around them.

I was also very fortunate in the people I worked with. Robert Twycross, in particular, was an extraordinary mentor. He gave us the freedom to develop new ideas and encouraged us to share our work more widely. That openness led to collaborations across the UK and internationally. For a time, Sobell House and St Christopher’s became key centres for teaching and developing bereavement care.

Over the years, I took on different roles – voluntary services coordinator, bereavement service manager, research fellow, Head of Education – but the thread running through it all was the same: doing work that made a tangible difference. Being there for people, helping them feel less alone, and supporting them through some of the most difficult times in their lives. That is what kept me here for so long.”