Putting a stop to means-testing for end of life care

When Roger Phillips was told he had terminal cancer, he made it clear to his daughter and son that he wanted to die at home.

But it did not happen because in the end he and his family were not given the help they needed to make that happen.Indeed, at no stage were they even told there was help out there.

This is not uncommon.   Although research shows that 73 per cent of cancer patients say they would prefer to die at home, the majority continue to die in hospital.

And in many cases it is because of the lack of social care, such as help with washing and dressing, turning the patient in bed or preparing meals.

Unlike nursing care, though, social care is mean tested and families or patients are either not told it is there or do not want to be means tested or do not want to pay.

Throughout this year cancer charities including Macmillan and Marie Curie have been campaigning to stop this means testing and for people in their last months and weeks of their lives to be provided with access to free social care so they can have the support to stay in their own homes.

Now their campaign has received has received backing from a major study which has analysed the end of life care of more than 73,000 people.

The Nuffield Trust research – believed to be the largest of its kind – shows that good social care can not only reduce hospital admissions but is likely to save money.

‘Minimal’ financial risk

In fact, the Nuffield  Trust says that it appears that the financial risk to the Treasury of scrapping the means testing for end of life care would be minimal.

They said the costs of social care for people at the end of life were reasonably predictable while hospital costs in the final few months rose sharply.

Dr Martin Bardsley, Nuffield Trust head of research, said: “Our study suggests how social care might be effectively substituting for hospital care for this group of people.  The worry is that if funding for social care is cut back, people may have no option but to use hospital care.”

Duleep Allirajah, head of policy at Macmillan, goes further and says that the Government needs to ring-fence money for local authorities to specifically use for end of life care.

Certainly the Nuffield Trust report reveals considerable variation in the use of social care between local authorities – in some cases a two-fold variation.

None of this will be of any surprise, however, to Lacey and Lewis Phillips, who cared for their father has he was dying from cancer.

Still distressed

Even though it is nearly three years since her father died, Miss Phillips is still distressed.

She had travelled from her home in Northumberland to Surrey to help care for him.  Nurses came in to work the suction machine to keep his lungs clear but she was left to do everything else, her brother only able to help when he wasn’t working.

“I wouldn’t get to sleep until 4am each morning and then he would wake up a couple of hours later,” Miss Phillips said.

“He would sleep during the day but I couldn’t.”

Mr Phillips was taken to accident and emergency four or five times during the last seven weeks of his life.

Sometimes he would be admitted and sometimes he would be sent to a hospice before being sent home.  Not once did anyone at the hospital or the hospice mention social care.

“It would have helped even if someone could have gone and done the shopping,” Miss Lacey said.

At one point both of them had gone for two nights without sleep.  She was at the end of her wits, she says.

In the end, she was simply not able to provide the care he needed and he was admitted to hospital at the end of December 2009.  He died there on 3 January, 2010.

“My dad was not given the option to think about where he wanted to be when he died.  We did not know that it was possible to get social care support.  If someone had talked through the option with us we would have asked for more help,” she said.

Follow Victoria on Twitter via @vsmacdonald