One in four UK families who need end of life care missing out on crucial support

Jul 03, 2017

One in four people who require end of life care and their families are not getting the support they need – especially those with conditions other than cancer - according to new analysis published today by the charity Hospice UK.

The research highlights that there are potentially 118,000 people in the UK with terminal and life-limiting conditions who are not able to access the expert care they need at the end of life, including hospice care.

Hospice care can provide effective symptom relief for people approaching the end of life, as well as other aspects of care, such as spiritual and psychological support or complementary therapies to promote wellbeing. Hospices also provide vital emotional and practical support to families, including bereavement counselling.

Today Hospice UK launches a new campaign - called Open Up Hospice Care. It aims to raise awareness among the public about the fact that hospice care is available to all people, regardless of who they are; their sexual orientation, ethnicity, disability or illness.

There are a number of reasons why people are not referred for hospice, or other end of life care.

People with a non-cancer diagnosis are often referred for end of life care in smaller numbers and at a later stage than people with a cancer diagnosis. This can be because of low awareness among some healthcare professionals about options such as hospice care in improving quality of life for people with a terminal diagnosis.

Also, studies have shown that people from economically deprived areas, BAME (black and minority ethnic) communities and LGBT (lesbian, gay, bisexual and transgender) people can experience barriers to accessing end of life care services.

Hospice UK is working with hospices to identify and support people who may be missing out on hospice care, especially those with conditions such as dementia, heart and liver failure and lung disease.

Charitable hospices are reaching out to LGBT people, people from BAME communities and those from other minority groups, who do not always get access to end of life care, and making sure they provide care that is appropriate to their needs.

Hospices are also leading initiatives to widen access to palliative and end of life care – in both hospices and other settings, such as care homes and hospitals. Hospice UK is investing in new technology - Project ECHO – to help support this and share hospices’ expertise in end of life care more widely in other settings.

Project ECHO uses videoconferencing technology to help train primary care clinicians to provide specialist care services for people with complex health conditions, including palliative care.

Tracey Bleakley, Chief Executive of Hospice UK said:

“Sadly, many families of people with terminal and life-limiting conditions are missing out on the care they need for their loved ones at the end of life.

“Hospices are leading efforts to widen access to end of life care, especially by reaching out to more people in their communities and also working in partnership with other care providers, but we know there is more to be done.

“Greater awareness of the value of hospice care and other types of end of life care and more collaboration between all care providers can help tackle current inequities to ensure that everyone is able to get the support they need at the end of life.”

Hospice UK is calling on the public to show their support by donating to its campaign.

Notes to editor:

  • More information about the campaign and a copy of Hospice UK’s new analysis is available on Hospice UK’s website.
  • The one in four statistic comes from new analysis by Hospice UK based on methodology in the Independent Palliative Care Funding Review (2011) which was limited to England and which has been applied to 2015 UK-wide mortality statistics.
  • Funds raised by the campaign will go towards Hospice’s UK work supporting hospices to work in partnership with a range of care providers, so that expert end of life care is available in other settings such as care homes.
  • Hospice care is specialist, holistic support that supports all of a terminally ill person’s needs, including medical care, as well as vital spiritual and emotional support. Hospice care also provides vital support for their families, including practical advice, counselling and bereavement support.
  • The hospice care sector supports approximately 200,000 people with terminal and life-limiting conditions in the UK each year according to the Hospice Care in the UK report 2016. Hospices also provide bereavement support to 40,000 people.

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