Social care white paper must focus on integration

Patients and service users want integrated services, easy access and less paperwork, say Jules Acton and Don Redding

Integration integration integration. When National Voices asked charities what patients and other service users wanted from the health and social care reforms, ‘integration’ or joined-up care was the top of the wishlist.

Why? Because people are tired of falling through gaps in their care and fed up with dropping out of the system because ‘the system’ hasn’t thought things through from the perspective of the user; people are tired of organisational barriers and boundaries that delay or prevent care.

One of the biggest chasms for service users can be found at the interface between healthcare and social care. Many people have never even heard of ‘social care’ – not until they come up against the difficulties of getting some. And many more people don’t even know that this gulf exists. Not until they need to cross it, get exasperated, worn down and bewildered as they battle through arbitrary divisions between different types of care.

Barbara Pointon’s experience demonstrates where it can all go wrong. Barbara is a former carer to her husband, Malcolm, who lived with Alzheimer’s for 16 years. She has drawn up an illustration of Malcolm’s dizzyingly complex ‘web of care’ and gives a heart-rending account of the challenges they faced with different types of care Malcolm needed.

Barbara says: “Over our 16-year journey I lost count of the number of battles I had to wage with officialdom on so many fronts … The big divide between health and social care, although it’s a bit narrower than it was, still creates mountains of bureaucracy – both paperwork and electronically – and sucks up hours of professional time spent in meetings. Many assessments seem to me to be not so much about a patient’s needs, but who should pay for the care.

“I was very grateful to all the health and social care professionals – they were magnificent. But both they and I frequently agreed that the fragmented systems of care, crawling under layers of management and paperwork, is frankly … no longer fit for purpose, especially for an ageing population with multiple conditions – its inefficiency must cost millions.”

So what is the way forward? After the health bill battles, the Department of Health and NHS are ‘discovering’ integrated care and designing new frameworks and incentives, but with a strong health bias. With social care in crisis, meanwhile, these new approaches risk excluding some social care support needs, thereby redrawing the boundaries in a new place.

National Voices – a coalition of 130 health and social care charities – would rather see a new approach based on co-ordinating care around all needs of the individual and their carers. There will not be one model but there should be one set of principles.

There may be different funding streams – and new state and other funding for social care must follow Dilnot – but they need to be treated as one ‘big pot’, with a holistic and single approach to needs assessment.

Professionals from various services working in either actual or virtual multidisciplinary teams in the community should be able to offer personalised care planning – including end of life planning – equally to people in their own homes, in supported accommodation or in care homes.

As Barbara Pointon says: “Why do you call it primary, secondary, or social care? Care is care.”

Jules Acton is director of engagement and membership for National Voices, and Don Redding is the charity’s policy director