More than half of people in the UK doubt NHS will provide high quality care to someone who is terminally ill

More than half (53%) of people in the UK doubt the NHS will provide high quality care to them or someone close them who is dying, according to a UK survey out today from Marie Curie.

Half (50%) say they wouldn’t know where to turn for practical support if someone close to them were terminally ill and most (71%) say people don’t talk about death or dying enough. 

People in London (54%) and Scotland (56%) who know someone who has died in the last three years are more likely than people in other regions to say experience of caring for someone who is terminally ill made them more concerned about their own death and getting the help they need. One in three (32%) people in London who know someone who has died in the last three years say the experience has made them a lot more concerned about getting help they need when they are dying.  People from London who know someone who has died are also more likely than people from other regions to say that the quality of care and support that they received from local services when their loved one was coming to the end of their life was poor. In contrast, people in the North of England and Northern Ireland who have recent experience of someone close to them dying are more likely than people from other regions to say the quality of care their loved one received at the end of life was good (73%).

The research says:

• People who had supported someone who was terminally ill said that the experience made them more concerned about the care they would receive at the end of life (45%)
• The majority (77%) felt that end of life care should be more of a priority for the NHS
• People in London (31%) and the South East of England (30%) who know someone who has died in the last three years, are particularly likely to say that it was difficult to access required support when that person was coming to the end of their life, while people in the North West of England (68%) who know someone who has died are likely to say that it was easy.  15% of people in London say that the quality of care was very poor, compared to 5% across the UK as a whole
• People are confused about the funding of end of life care - 68% of people believe that medical care in an NHS hospital care is provided free of charge but less than half (47%) say they think personal care in a hospital is provided free of charge.  Only a minority (16%) believe personal care in the home is provided free of charge to someone who is terminally ill or dying in the UK
• Personal experience of supporting someone at the end of life intensifies concern about getting help. 45% of people who know someone who has died in the last three years say that their experience of someone they know dying has made them either slightly or a lot more concerned about getting the help that they need when they are at the end of their own life.

The poll, conducted by ComRes for Marie Curie, comes in the wake of the Francis Report highlighting care quality standards and the Dilnot report on funding social care.  The survey highlights public confusion and concern about end of life care services, and the different experiences people have.  The results will be debated at a seminar for health professionals later today.  Organised by Marie Curie, with Minister of State for Care and Support Norman Lamb MP, the charity will call for ‘a change in thinking’ about end of life care and for the introduction of free social care funding for those in the last six months of life.

The results are being published alongside the charity’s new ‘Death and Dying: Understanding the data’ report providing headline analysis and policy recommendations using key end of life care data for England – www.mariecurie.org/deathanddying and Marie Curie’s End of Life Care Atlas tool – http://apps.mariecurie.org.uk/marie-curie-atlas/html5/atlas.html - which the charity hopes will help all providers of services, commissioners and social care providers identify gaps in end of life care in their area.  The survey and new commissioning tools form a series that includes a study of 60,000 patients commissioned by the charity from the Nuffield Trust (Nov 2012)   that found patients cared for by Marie Curie’s 2,000 nurses were less likely to use hospital care.

Dr Jane Collins, Chief Executive, Marie Curie Cancer Care said: “We know that the provision of good quality end of life care varies greatly and that the end of life care system isn’t working well enough for all.  Clearly the public think the same. Marie Curie is calling for ‘a change in thinking’ about end of life care and for the introduction of free social care funding for those in the last six months of life.

“We are working to challenge policy makers and health professionals to work in a different way, ensuring they understand the real need and provision for people who are nearing the end of their lives. It is only by getting more people out of hospital and into more appropriate care that the government will be able to meet the twin challenges of looking after more people for longer at much reduced cost."

For more information visit www.mariecurie.org.uk/improvingcare

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References

1. The ComRes UK adults online survey was conducted from 6-8 February surveying 2601 UK adults. Data was weighted to be demographically representative of adults across the UK. Full data tables can be found at www.comres.co.uk  

2. For the Death and dying: Understand the data report, study by the Nuffield Trust providing strong evidence that end of life care provided by the Marie Curie Nursing Service reduces the need for emergency hospitalisation and Marie Curie End of Life Care Atlas web-based mapping tool visit www.mariecurie.org.uk/improvingcare

3. For more information about Marie Curie services and impact visit www.mariecurie.org.uk/impact