Terminal care, Hospice care, Palliative care, End of Life care the terminology confuses but reflects the growth in knowledge, skills and attitudes over the last 50 years as the discipline has evolved.
I first came across the work of Cicely Saunders at St Christopher’s Hospice (then called terminal or hospice care) in South London 40 years ago when I read an article written by the actress Sheila Hancock describing the excellent care that her (first) husband had received at St Christopher’s. As a young doctor working in London I soon found myself phoning St Christopher’s for advice on managing my patients.
A decade later I came to Sobell House Hospice to be the second consultant with Robert Twycross (see article written for this website on February 2016). By now hospice care was recognised as part of palliative care which is simply defined as the holistic care of the patient, family and carers during and at the end of a life threatening illness.
Sobell’s focus besides the in-patient hospice was then to take and share the philosophy of palliative care with our colleagues in the community. Our specialist nurses (sometimes called Macmillan nurses) became linked to GP practices and our involvement with patients at home grew and grew.
Sobell House is distinctive in that it is one of only a few hospices that were built on a NHS hospital site, next to the Cancer centre, and with the local health authority agreeing to fund the service. Right from the beginning in 1976 The Friends of Sobell House (a registered charity ) existed to ensure patient amenities were always available eg the famous drinks trolley which goes round the ward before lunch and supper. The Friends, initially, held an annual fair and other small fund raising events. Then around 1990 the health authority reduced our budget and we were faced by the prospect of closing 4 beds. This was a critical point for Sobell House which needed an extra £100,000/year to keep the beds open. The Friends accepted the challenge and as we now know have continued to do so with ever increasing amounts of money.
The Famous Drinks Trolley.
The Friends had to rapidly become a significant fund raising charity (the name was later changed to Sobell House Hospice Charity). They were initially helped by a management consultant (Ken Beresford) who was provided free by British Rail and who helped transform the Charity and initiate the trading arm and opened the Charity’s first shops.
The first Sobell House Charity shop was opened by the Charity in Little Clarendon Street in Oxford in 1990. It is still trading at the same site today.
Meanwhile the service was growing and we established a team of nurses with doctor support to work in the John Radcliffe to see patients, support and help train the ward staff. This was an era (90s) when palliative care was first beginning to be recognised as a need and specialty within the NHS. The volume of work has steadily grown over the last 20 years and with it the recognition that palliative care should be available to anyone with a symptomatic life threatening illness not just cancer and so the needs of the patient must be the determinant for palliative care not necessarily the disease process.
Today the NHS uses the term “End of Life Care” which is a part of the palliative care work that we undertake. This is very relevant to planning how we can stay in the community at the end of life. Also how to improve the care of those who die in our acute hospitals which is where the majority of us still die. The hospices can only provide space for around 7% of all deaths.
So we remain, forty years on, ever grateful to the friends of Sobell hospice who support the ever challenging work that we do, and now to help us to strengthen and expand our services in the Oxford University hospitals and the resources available in the hospice.
Consultant in Palliative Medicine at Sobell House Hospice