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End of life care

Leicester Joint Strategic Needs Assessment (JSNA). Health and social care needs associated with end of life care, 2016.

End of life care is care that helps all those with advanced, progressive or incurable illness to live as well as possible until they die.

Around half a million people die in England every year. Most deaths occur in people aged over 65. In Leicester City, the number of deaths is approximately 0.8% of the population total, which means there are about 2,500 deaths each year. Nationally it is estimated that 25% of all deaths are unexpected. For Leicester this would mean 625 deaths.

Cancers, circulatory disease and respiratory conditions account for 70% of deaths that are not sudden. The Palliative Care Funding Review report recommends between 69% and 82% of deaths are likely to have preceding palliative care needs; this means between 1,725 to 2,050 patients of the people who die in Leicester City every year will require palliative care. According to the National Council for Palliative Care, the number of deaths each year in England and Wales is predicted to rise by 17% between now and 2030. For Leicester City this would be an additional 250 deaths per annum.

Who’s at risk and why?

In Leicester City in 2014/15, 2,659 people over 18 registered with Leicester GPs died; 12 under 18s and there were 5 neonatal deaths totalling 2,676. A total of 2,478 after death audits were completed and of those audits, it was evaluated that 2,189 (88.3%) people with a care plan died in their preferred place of choice. General practices keep registers for the Quality & Outcomes Framework (QOF) of people who need palliative care. In 2014/15 in Leicester, the QOF palliative care register had 1,827 patients recorded; of which 1,272 (70%) had care plans.

The level of need in the population

On the 1st July 2015 1,834 patients were recorded on the palliative care register. This is 0.48% of the City's population at that point. Over 75% of the patients on the register had developed an end of life care plan with their GP or health care professional, discussing their preferred place of care and death.

Current services in relation to need

Adult end of life care in Leicester City is provided by a community health service provider, an acute hospital (across 3 sites), 62 GP practices, one out of hours provider, one walk-in centre, one urgent care centre, one mental health trust, Leicester City Council adult social care services, East Midlands Ambulance Service and the voluntary and independent sectors, including one adult hospice.

The main palliative care services in the community to support patients in their home in the last days of life are: Specialist Palliative Care, with LOROS being the main provider of these services; Hospice At Home service, with the main services being provided by Marie Curie and the out of hours unscheduled night care provided by the Leicestershire Partnership Trust (LPT) night nursing service; and Community Nurses provided by the LPT Macmillan Nurses and the LOROS specialist nursing teams.

For children there are additional support services such as Rainbow Hospice and Diana End of Life services. Children’s end of life care services are covered in the Children and Young People's JSNA.

Projected service use and outcomes in 3-5 years and 5-10 years

Risk stratification of the population is a key element of the Long Term Conditions agenda. It is also a useful method of predicting the need for end of life care services at a population level. Based on an estimated increase of 17% in the number of deaths, there may be as many as 2,800 deaths in Leicester by 2030, with the equivalent of a potential, additional 250 patients requiring palliative care by 2030.

Unmet needs and service gaps

There is a growing understanding within the health sector of what is important to people at the end of life. It is anticipated that the following changes will be made to continue to improve the quality of care offered to patients and their families/carers at end of life. These are: to institute a single point of contact for advice and co-ordination of care; to enhance community specialist palliative care provision; to increase the availability and skill of workforce who deliver general palliative care; and to improve access to appropriate social and NHS funded care for physical care needs in a timely manner.

Recommendations for consideration by commissioners

The health and social care system have been working in partnership for 3 years to review end of life as a key priority and it is now aligned to the Better Care Together programme. The overarching recommendations for consideration are to ensure: the opportunity for patients to discuss their personal needs and preferences, which should be taken into account whenever possible; to coordinate care and support; to ensure rapid access to specialist advice and assessment; to provide high quality care and support during the last days of life; to provide services that treat people with dignity and respect; and to offer appropriate advice and support for carers at every stage.

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