To keep on caring – more support needed for families and carers

15 June 2018
Families and carers

One in ten carers said they would not provide such care again

The Director of the Wolfson Palliative Care Research Centre at the University of Hull has called for more support for carers in national Carers Week – particularly when it comes to end of life care.

The Wolfson Palliative Care Research Centre is a world-leading centre for research into palliative care. The Centre brings together high calibre research undertaken at Hull York Medical School and the University of Hull to help people with life-limiting illnesses to access the best possible care.

Professor Miriam Johnson, Director of the Centre and Professor of Palliative Medicine at Hull York Medical School, said: "Every year Carers Week highlights the important role family members play in providing end of life care – but our research has shown that one in ten carers said they would not provide such care again under the same circumstances. They need more support."

The research by Professor Johnson together with Professor David Currow, Associate Director for the Wolfson Care Research Centre, and Dr Victoria Allgar, Reader at Hull York Medical School shows that a significant group of family caregivers would be unwilling to provide care again.

Professor Johnson said:

"There is no doubt that caring for someone close to you can really take its toll – on your job, your relationships, your whole life."

Older people and those who had not used palliative care services were more likely to be unwilling to care again.

"Support by palliative care services isn’t just for those facing imminent death, for example,  due to late-stage cancer. It is there for anyone with a progressive illness, providing an important layer of care alongside usual treatment to help patients live as well as they can. It can make the difference between coping and not coping for family and friends."

Professor Johnson and a team of researchers included questions in the Household Survey for England about caring at the end of life. The findings show that one in four people had had someone close to them die in the previous five years. Of these, one in three had provided personal care. 

"There is no question that the way we die is changing,” said Professor Johnson. “In the past, it was often quick and with no warning as a result of infection or trauma. For many of us now it will come when we are older – caused by chronic medical conditions such as heart, kidney or lung disease, diabetes or dementia.

"So although we are living longer, the downside is that we will need care for an often complex set of conditions over many months or even years."

Professor Fliss Murtagh from the Wolfson Palliative Care Research Centre contributed to a study – conducted at King’s College London – published by BMC Medicine which predicts an extra 100,000 people will die each year by 2040.

Professor Murtagh said:

"This represents a major increase – it will affect all of us in society. The reality is that most of us will either provide care or need it, in the approach to death. And most of us will look to our nearest and dearest – our family – to give us that support."

While caring for a spouse or parent during a terminal illness can be rewarding, there are costs such as worsening health, social isolation and financial loss.

Family carers take on a role as carer when needed – mostly without training and without much warning.

They also represent a large unpaid workforce, estimated to contribute £132 billion per year to the UK economy.

Professor Johnson said:

"Their contribution is invaluable – both on a personal and economic level – but they rarely get the support they need.

"The UK has one of the world’s most developed palliative care services, yet many people, for example those with a heart condition, respiratory or kidney disease are missing out.”

Older people in  deprived areas, and those with diseases other than cancer are all less likely to access palliative care services.

"It is essential that we raise awareness of palliative care services so that those that could benefit from this support will be encouraged to do so.

"This really could make a difference to the patient and their carer. In a wider sense it is important for us to all take stock of the fact that for society as a whole – we simply can’t afford for this experience to be so bad that family carers wouldn’t want to do it again."

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges carers face and recognise the contribution they make to families and communities throughout the UK.

Around 6.5 million people in the UK are carers, looking after a parent, partner, child or friend. They provide unpaid care.

More insights on palliative care from Professor Johnson and David Currow, Professors of Palliative Care at Hull York Medical School, are available here. More information on how Professor Fliss Murtagh is leading a palliative care research programme with Yorkshire Cancer Research is available here. For more information on how to access palliative care, please visit Hospice UK.