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Large number of terminal cancer patients having to rely on family and friends for support

Author: Tom Moran
15 September 2015

Research commissioned by Macmillan Cancer Support suggests that 44% of people with terminal cancer have no practical support beyond friends and family.

The findings are based on 255 interviews with people living with terminal cancer, people caring for someone at the end of life and recently bereaved carers.

At the time of the research, 84% of people with cancer at the end of life were eligible for formal social care support, using England’s Fair Access to Care Services (FACS) criteria.

The new research comes just weeks after a study published in Palliative Medicine by researchers from University College London estimated the cost of caring for people with cancer at the end of life.

That study found the total cost of care for people with lung, breast, colorectal or prostate cancer (which account for approximately 45% of all cancer related deaths in England and Wales) was £641 million per year, of which £219 million is the contribution made by informal carers.

Macmillan has called on the government to improve end of life care, which was one of its manifesto commitments.

The charity’s chief executive, Lynda Thomas, warned that end of life care was now "at a crossroads."

"We know that too many people are not accessing badly needed social support at home, and that planning and coordination of care is not always what it should be," she said. "We can either take action to improve the last days of many, or we can continue with this unacceptable, outdated status quo.

"It is now vital that the government fully funds the recommendations in February’s independent review into choice at the end of life, and in the process ensure that people at the end of life have as ‘good’ a death as possible."

The research, which was undertaken by Bright Blue Research (formerly mruk), also found that 28% of those with terminal cancer had to make unplanned or emergency visits to hospital, with 13% saying that this happened often or all the time.

Additionally, 86% of people with terminal cancer experience feelings of depression or sadness, 73% feel hopeless on occasion, and 45% feel guilty.

Ann Osborn, who cared for her father, John, when he was diagnosed with terminal bowel cancer in 2010, commented: "Caring for someone who is at the end of life is a massive undertaking that is very hard to cope with and we couldn’t manage. There needs to be better social support available to everyone at the end of life."

Lynda Thomas added: "People with cancer should never feel alone and unsupported, especially at the end of their life, and yet this research plainly illustrates that the inadequate, inconsistent end of life care system is failing people in the most basic way.

"The emotional impact this dysfunctional approach to end of life care has on people with terminal cancer is particularly inexcusable. It is simply appalling that people with cancer at the end of life are being made to feel guilty at what is already a very difficult time. Equally, it is just not right for dying people to spend precious time in A&E because support is not there for them at home."

See more articles in Research

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