Majority of UK adults worried about access to palliative care, survey suggests

Almost two-thirds of UK adults are worried about access to palliative and end-of-life care, according to a survey.

The results, released on the same day a debate on assisted dying is taking place at Parliament, should be a “wake-up call for current and future governments”, researchers said.

Palliative care is described by the NHS as care which makes someone who has an illness that cannot be cured as comfortable as possible by managing their pain and other distressing symptoms.

A report by the Health and Social Care Committee in February following its inquiry into assisted dying/assisted suicide, concluded that, while the UK has long been a world leader in palliative and end-of-life care, access to and provision of such care is “patchy”.

It said: “The Government must ensure universal coverage of palliative and end-of-life services, including hospice care at home.

“It is important that everyone is able to choose what type of support they need at the end of their life, and that their advanced care plan is honoured where possible.”

The report called for the Government to commit to an uplift in funding to guarantee support for hospices which need financial help.

Earlier this month Hospice UK warned that hospices are facing a “devastating” financial crisis because of rising staff costs which are putting services at risk.

In a response published on Monday to the committee’s report, the Government said it acknowledged the “disparities in access to hospice services, especially for those living in rural or socio-economically deprived areas”.

The Government recognised that most hospices are charitable, independent organisations with funding for providing NHS services dependent on various factors, including what other statutory services are available in the Integrated Care Board (ICB) area.

Committee chairman Steve Brine said: “With ICBs responsible for commissioning hospice services, there is real concern that, under current funding pressures, hospice care risks becoming the poor relation.”

He called for more to be done to tackle inequalities in access to hospice services.

He said: “In its response, the Government has acknowledged there are disparities in access to hospice services, particularly for those living in deprived areas.

“This is unacceptable and more must be done to address this inequality to ensure that everyone can access hospice services, no matter where in the country they live.”

The latest survey, commissioned by the Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care at King’s College London (KCL) and carried out by YouGov, found that 65% of people across the UK are worried about access to palliative and end-of-life care.

Around four in 10 (41%) think not enough NHS resources are allocated to palliative care, the survey also found.

Almost a quarter of people (24%) said they do not know much about or have not heard of palliative care.

Some 2,164 adults took part in the online survey in January, including a sample of 145 adults from an ethnic minority background.

The results showed disparities in knowledge between white and ethnic minority groups, the researchers said.

More than a fifth (22%) of those from ethnic minority groups said they have not heard of palliative care, compared with 4% of white people, while 18% said they believe it is accurate that palliative care involves giving people medicines in order to shorten their lives, compared with 5% of white people.

Almost a third (30%) of people from ethnic minority groups said they do not trust healthcare professionals very much or at all to provide high-quality care towards the end of life, compared with 17% of white people.

Professor Katherine Sleeman (pictured), from KCL, said: “The fact that 65% of UK adults say they are worried about access to palliative and end-of-life care should be a wake-up call for current and future governments.

“The shocking gap in the public’s understanding of palliative and end-of-life care also needs to be addressed as the assisted dying debate gathers pace.

“It is highly concerning that many people believe that palliative care involves giving patients medicines in order to shorten their lives.

“Over 100,000 people in the UK die each year needing palliative care but do not receive it, and inequalities in accessing care, including among people from ethnic minority groups, are common.

“It is essential that we address the disparities that create additional barriers for people to access the care that they need. This includes an urgent need to improve death literacy among the public.”

Dr Sabrina Bajwah, clinical senior lecturer from the faculty, said: “We already know that ethnic minority patients are more likely to experience distress at the end of life.

“It is concerning to note that nearly one-third of respondents from ethnic minority groups lack trust in healthcare professionals’ ability to deliver high-quality end-of-life care.

“With our population becoming increasingly diverse, it is imperative that we promptly address this inequality by enhancing palliative care and end-of-life services to effectively cater to the unique needs of these patients and their families.”

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