08.04.15
Thousands missing out on palliative care
Thousands of terminally ill patients across the UK are missing out on specialist palliative care, according to a new report.
The study from the Personal Social Service Research Unit at the London School of Economics and Political Science (LSE), commissioned by Marie Curie, claims that there are “serious inequities” in terms of who receives the right care and who doesn’t.
Researchers uncovered that services had “traditionally” been geared towards people with cancer, with a lack of care options for most people who die from other conditions every year.
Only 20% of referrals to specialist palliative care are for people with conditions other than cancer. This is up from 12% in 2008, but is still much less than the 70% of people who die from non-cancer conditions each year. People undergoing active cancer treatment and with haematological cancer are also less likely to get a specialist referral.
What is concerning though is that, during their last three months of life, people with conditions other than cancer also receive less care from generalists, such as GPs and community nurses.
People aged 85 or over also receive little specialist palliative care: they account for 39% of deaths but just 16% of specialist referrals. People from Black, Asian and Minority Ethnic groups are just as likely to be referred to specialist palliative care services as people of white ethnicity when one takes into account their age profile.
The report claims that there are a number of reasons for the inequities. For example, in hospitals there is limited access to face-to-face specialist palliative care for inpatients, with only 21% of hospitals providing access seven days a week despite national recommendations that they do so, and only 2% providing round-the-clock access.
Also, in the community, GPs may experience conflicting pressures on their time, and may lack confidence, knowledge and skills in end of life care, the report claims.
LSE researcher Josie Dixon, a co-author the report, said: “There is need for investment to extend palliative care provision to everyone who would benefit from it. Service gaps need to be addressed, including finding new and better ways of delivering generalist care and care for people with conditions other than cancer. New investment is especially needed to meet the growing demand for palliative care from an ageing population.”
On top of this, front-line clinicians say a lack of coordination between teams delivering care, insufficient funding for services and time-poor staff are barriers to meeting the needs of people with a terminal illness.
An Ipsos MORI online survey, which explored perceptions among a sample of 500 clinical professionals of the standards and quality of care that they encounter for those with terminal illnesses, revealed contrasting opinions about the level of care provided in different care settings.
For example, while 53% of respondents agree that the needs of patients are adequately met overall, far fewer agree that the same is true for those using out-of-hours social care (15%) or in accident & emergency (15%).
Also, only a third of respondents (31%) agree that out-of-hours medical care met peoples’ needs adequately, while 45% agree the same was true for hospital in-patients.
Dr Jane Collins, chief executive of Marie Curie, said: “These findings do not paint a great picture for people living with a terminal illness in the UK today. It is undeniable that many people do not get the care and support they need and everyone from medical professionals, researchers, policy-makers and those affected by terminal illness understand this. If the current system of care is failing to deliver now, how will it cope with the demand to come?
“Everyone in the UK who is living with a terminal illness deserves to get the care and support they need. There is a need for alternative models of care and capacity building – particularly in the community – to address the inequities of the current system and to meet the projected demands of the post-war, baby-boomer generation in the years to come. If we don’t do this, we as a society will continue to fail vulnerable people at the time they need us most.”
Claire Henry, chief executive of the National Council for Palliative Care, added that the LSE report highlights serious inequalities in access to palliative care.
“We only have one chance to get care right for people who are dying, and it is unacceptable that a person’s background or diagnosis can be a barrier to receiving the care that they need,” she said.
“Everyone has a right to high quality palliative and end of life care, be it in a hospital, a hospice, a care home or their own home.”
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