Lack of awareness of specialist end-of-life care sees many families missing out

Families are “missing out” on specialist end-of-life care as two in five people are unaware that most hospice services are provided for free, a charity has said.

Only 57% of Britons are aware that services provided by hospices are generally free for those receiving them, a new poll by Hospice UK found.

Hospice care is provided free of charge to people with terminal or life-limiting conditions, the hospice and palliative care charity said.

The charity said hospice services can be provided at home and in care homes, but a third of adults believe such care can only be provided in a hospice building.

The poll of 2,100 British adults also found one in five of those surveyed believed that hospice care was only available to people in their final days.

However, the charity said people with terminal and life-limiting conditions can use hospice care at any stage of their illness, not just at the very end of their life.

Previous research by the charity concluded one in four people who require end-of-life care and their families are not getting the support they need.

It found 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 UK chief executive Tracey Bleakley (pictured) said: “This survey shows there is tremendous good will by the UK public towards hospices and that they are dear to people’s hearts, however it also reveals some surprising gaps in people’s knowledge about modern hospice care.

“We know the very idea of hospice care can be daunting for many of us and this can affect how people engage with hospices.

“The insights from this survey will help us to reach out to more people who don’t know about the life-enhancing hospice care available to people with terminal and life-limiting conditions.

“At a time when one in four families are missing out on hospice care and with increasing pressures facing the UK’s care system, it is more important than ever that more people are aware of what charitable hospices can offer and where to turn when they need support.”

Meanwhile a separate study examined the relationships of parents of children with life-limiting conditions.

The small study found that parents who had more hospice care for their child were more likely to be in stable relationships.

The research, which included face-to-face interviews and an online poll of 126 parents, found that 64% of divorced or separated parents cited the strain of caring round-the-clock as the main reason for their relationship breakdown.

Researchers from Bournemouth University and Julia’s House, the Dorset and Wiltshire children’s hospice charity, found that couples in stable relationships were, on average, receiving 43% more hours of support from a children’s hospice than those in distressed relationships.

Researchers said a few hours of respite a week could make a difference.

Barbara Gelb, chief executive of the children’s palliative care charity Together for Short Lives, said: “This new research brings into stark focus the impact that caring for a child with a life-limiting condition has on relationships and wellbeing.

“It shows just how vital the short breaks offered by children’s hospice services across the UK are in helping to relieve stress on parents and families caring for seriously ill children.”

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