Included in the Commission on the Future of Health and Social Care in England's call for evidence, Clifford's story illustrates how the current divide between health and social care affects people's lives. See how Clifford's story would change if the commission's recommendations were implemented.

Clifford's experience under the current system

Clifford is 77, very physically fit but has no cognitive understanding. He can be very difficult. After a very distressing emergency admission on to a mental health assessment unit, it was decided that he couldn’t go back home with Mum. Dad was assessed for NHS Continuing Healthcare [CHC] funding – full funding by the NHS. This was declined.

His needs are complex and there were no care homes in my parents’ area which could meet all of Dad’s assessed needs for the amount that the local authority was willing to pay. The only home that agreed to take him was 22 miles away from Mum. In order to get there, my 73-year-old mother would have had to spend 2 hours on a bus, each way, changing 3 times on each journey. By attempting to place Dad further and further away from family and friends simply due to cost, his assessed need for family contact was not being met. I made a formal complaint to the county council’s head of consumer relations, and also to the head of legal services. Dad was reassessed for CHC and was granted it. We were obviously pleased with this result… but we couldn’t understand why, only six weeks earlier, he didn’t even meet the basic criteria.

Dad was subsequently placed in a home 4 miles away from where he has lived for 50 years, and where family and friends can visit him easily; he is visited around 4 to 5 times a week. I know that if I hadn’t fought this, Dad would now be in a home 22 miles away from family and friends, with perhaps visits once a week.

I could see the same situation happening to others on Dad’s ward, and I was appalled by the whole system and the way in which Dad was let down by his care co-ordination team.

But since the interim report was written there has been a further twist. In August last year his CHC funding was removed – as his behaviour was less aggressive, apparently making his care not as difficult – or in the jargon ‘was not of an intensity and complexity to require CHC funding’. But he still needed a very high level of care – he was doubly incontinent, had to have all needs anticipated, was totally immobile, had bed sores and needed 24-hour nursing and care. We began our appeal in September and now await the outcome of the hearing held in July. This has created fresh worries about being forced to move him to a different care home that would cost less than his current one – or having to pay a ‘top-up’ fee to keep him where he is. So far no other home is willing to take him because his needs are so high. Most of Dad’s pension is now going towards his care home fees, along with a local authority contribution.

This underlines the importance of funding social care more generously to provide the right care in the right place.

Clifford's story in a joined-up system

Under our proposals Clifford’s needs would be deemed ‘high’ (‘critical’ under the old system) and so all his care would be free at the point of use. This would recognise that the needs of people with dementia and other conditions can fluctuate and go backwards and forwards across the health and social care boundary. He would not have required three different assessments and his family would have been spared the time, stress and cost involved in battling against earlier decisions. Clifford would still need to meet the accommodation element of his care home costs under our proposals – subject to the annual cap of £12,000 effective from 2016 – but this would be much less than the total bill that Clifford and his family have to find under the current system.

Our proposal for making critical care free at the point of use would also remove the uncertainty and worry caused by the prospect of having to find a care home that could cater for Clifford's needs but at a lower cost than a Continuing Healthcare-funded placement. Currently he is in a home close to where he has spent most of his life and where friends and relatives can visit easily. His continuity of care is now threatened by the possibility that he might have to move, depending on the outcome of the appeal.

This underlines the importance of funding social care more generously to provide the right care in the right place.

We are grateful to Becky Huxtable, Clifford's father, for sharing his story.

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