Dying people in London must get better support from health services, says The King's Fund

Some patients with terminal illnesses in London are not receiving adequate care because of patchy NHS provision and variations in services, according to a report from The King's Fund published today.

Palliative care: Perspectives on caring for dying people is based on a two-year research study, which included a survey of staff responsible for end-of-life care from five London primary care trusts. The report highlighted why services are not equally available across London, such as limited resources, a lack of staff and differences in priorities. It also found that differences in roles and responsibilities, and weak relationships, between the three main health professionals responsible for end-of-life care - family doctors, district nurses and clinical nurse specialists - were main contributing factors.

The impact that the recently introduced changes to GP out-of-hours services was a major concern. Primary care trusts took over responsibility for providing out-of-hours services in December, but the report found that some services are limited and are likely to reduce patients' continuity of care. An audit of one family doctor co-operative found that it had been contacted by 81 patients with palliative care needs during one month. However, the co-operative had received medical details for only one of those patients.

The King's Fund chief executive Niall Dickson said:

'Although end-of-life care has risen up the agenda, with more funding, it's a real concern that some of the new out-of-hours services may not be meeting the needs of patients with terminal illnesses. These are some of the most vulnerable patients and they need the right support no matter what time of day it is. This report highlights the need for better systems and better links between the different parts of the NHS that provide out-of-hours care.'

The report found that family doctors, district nurses and clinical nurse specialists work well together, but many had a different understanding of their own roles, as well as the part played by others in delivering end-of-life care. Out of the five primary care trusts surveyed, most end-of-life care was provided by district nurses but many felt poorly supported by managers and felt they did not have a strong working relationship with other end-of-life care health professionals. Along with clinical nurse specialists, they could also be frustrated when some family doctors did not make the most of their role and were not fully involved in the care of their patients.

In addition, almost three quarters of family doctors in the survey regarded palliative care as a central part of their role, but one in four did not.

Report author Jenni Burt said:

'Our findings show it is fundamentally important that services and professionals, whatever their role, work together in providing care, and that clear responsibilities are set. Potential ways forward could include the development of a framework for planning, which will help set out roles and responsibilities, and the involvement of professionals with a special interest, such as family doctors or district nurses, so they can liaise between the three main professionals. This may help communication and the organisation of care.'

Read the report: Palliative care: Perspectives on caring for dying people

Notes to editors: 

1. The report is the result of a two-year research and development project supported by The King's Fund. Five London primary care trusts took part in the project, and we gathered information from a total of 565 people through needs assessments, focus groups, structured postal questionnaires and interviews.

2. Family doctors are the first point of contact for patients and retain overall medical responsibility for patients cared for at home whilst both district nurses and clinical nurse specialists provide advice, information and emotional support to patients and their families. Under the new GP contract, introduced in 2004, all family doctors must offer general management of patients who are terminally ill as an essential service.

3. Each year, the average family doctor supports five patients dying from cancer and 15 dying from other causes, including progressive non-malignant diseases such as heart failure. Eight of these patients may die under the care of the family doctor and others within hospices and hospitals.

4. Improving end of life care will be one of four specific areas that will be targeted by The King's Fund's new funding and development programme - Partners for Health In London. Starting in summer 2005, the programme will have over £1 million annually to share between four key health areas (end-of-life care, sexual health, mental health advocacy and integrated health care) and will provide development support for organisations who receive grants.

5. The King's Fund is an independent charitable foundation working for better health, especially in London. We carry out research, policy analysis and development activities, working on our own, in partnerships, and through grants. We are a major resource to people working in health, offering leadership and education courses; seminars and workshops; publications; information and library services; and conference and meeting facilities.