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Thousands miss out on palliative care due to unfair health system

Elderly-patient-with-carer-140pixelsThe UK’s palliative care system needs a major overhaul, according to an LSE report released today (Wednesday 8 April) which reveals widespread inequities and a lack of services for non-cancer patients.

Terminally ill patients with illnesses other than cancer; people aged over 85 years; black, Asian and minority ethnic (BAME) groups; and people living in socially deprived areas are all missing out on important palliative care services, the report from the London School of Economics and Political Science shows.

Thousands of palliative care patients often fail to receive sufficient pain relief and respite from other distressing symptoms, exposing gaps in services, poor communication and unclear roles and responsibilities.

The Marie Curie-commissioned report reveals that, compared to people with cancer, those with non-cancer conditions not only receive less care from specially trained palliative care staff but also less end-of-life care from GPs and district nurses.

Lead author Josie Dixon from LSE’s Personal Social Services Research Unit (PSSRU) says the findings should raise concerns, since the need for palliative care is fast increasing as the population ages, with the numbers of people aged 85 and over expected to more than double over the next 20 years.

People from BAME groups and those who live in more deprived areas are less likely to think they receive high quality palliative care and people in more deprived areas feel they are treated with less dignity by health professionals.

Based on calculations in the 2011 Palliative Care Funding Review, an estimated 92,000 people in England who would benefit from palliative care are not getting it, with around 6,200 people in Wales, 3000 in Northern Ireland and nearly 11,000 people in Scotland also missing out.

Only just over 20% of UK hospitals offer 7-day a week specialist palliative care and the quality of hospital care is rated lower than a care home or a hospice.

Despite over 70% of deaths being due to causes other than cancer – including respiratory illness, circulatory conditions and dementia – people with non-cancer diagnoses still account for only 20% of all new referrals to specialist palliative care services.

“Part of the problem is that palliative care has traditionally been for people with cancer and there is currently a lack of suitable models of palliative care for people with non-cancer and increasingly complex conditions,” Ms Dixon says.

People aged 85 and over also appear to be disadvantaged. Few receive appropriate palliative care, either because they are under-reporting their symptoms or because healthcare professionals are not giving them the attention they deserve.

Ms Dixon says that providing palliative care to those that need it could potentially generate net savings of more than £30 million in England, at least £2 million in Wales, more than £1 million in Northern Ireland and more than £4 million in Scotland.

"Palliative care can reduce symptoms and pain and help people die where they want to. It can also save money by preventing unwanted and distressing hospitalisations" she adds.

More than 56% of people now die in a care home within a year of being admitted, up from 28% in 1997.

"These statistics show that care homes have a growing role in caring for people who are dying, but they need more support from GPs and specialists than currently exists," Ms Dixon says.

Dr Jane Collins, Chief Executive of Marie Curie said:

“Everyone affected by terminal illness should have access to all the care and support they need, regardless of their personal circumstances. This report shows that this is not the case and some groups are getting a worse deal than others.  We don’t think this is good enough.

“We hope that this compelling evidence is a catalyst for change and used by policy makers and care providers to improve how all people with a terminal illness are cared for in the UK. It has the potential to improve the lives of millions of people, as dying is the one issue that affects us all.”


For interviews, contact Josie Dixon, PSSRU Research Fellow, on 020 79557678, mobile 07989 070 777 or j.e.dixon@lse.ac.uk; Professor Martin Knapp, PSSRU Director, on 020 7955 6225, mobile 07894 072589  or m.knapp@lse.ac.uk; or Tracy Barrett, Senior Media Officer Marie Curie 07515 135 353 or tracy.barrett@mariecurie.org.uk 

Additional notes for editors

The report, “Equity in the provision of palliative care in the UK: Review of evidence” was commissioned by Marie Curie and prepared by researchers from the PSSRU at the London School of Economics and Political Science. It is available from Wednesday 8 April at: http://www.pssru.ac.uk/publication-details.php?id=4962

The Personal Social Services and Research Unit  (PSSRU) is part of LSE Health and Social Care, located within the Department of Social Policy. The Unit’s current research programmes focus on needs, resources and outcomes in social and health care, with particular emphasis on economic aspects of community care, residential and nursing home provision, social care markets and commissioning, long-term care finance, and mental health policy.

Marie Curie is the UK’s leading charity for people with any terminal illness.  The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance. Marie Curie employs more than 2,700 nurses, doctors and other healthcare professionals, and with its nine hospices around the UK, is the largest provider of hospice beds outside the NHS.

8 April 2015