Ray's experience under the current system
My father, who suffered from dementia, was admitted to hospital with pneumonia 11 weeks before he died. As my dad was already known to social services with a care package already in place we thought the process for discharging him would be pretty straightforward... how wrong we were! What we didn't realise at this stage was how difficult, long and traumatic a process applying for continuous health care funding was to be.
The first multidisciplinary meeting was arranged without myself or my mother being told, I insisted that it was rearranged. And then the picking apart of my dad's care needs started.
Dad could not be left unsupervised as he was unable to do anything for himself and we felt as a family his care needs were high; he was at risk of malnutrition, dehydration and pressure sores and prone to recurrent infections. None of these needs seemed to be defined as a health need and it took five weeks to reach a decision on whether he was entitled to continuing health care - five weeks of his life that we can never get back while health and social care fight over who pays for his care, where is the person in all of this, where is what is best for them?
Then began our next battle, it turned out that dad's care package had to be arranged through the hospital's social services team which meant that dad could no longer have the care agency he had been using for the previous two years. Dad had had the same carer every morning for five days a week for the past two years. She had become like part of the family and although you are supposed to keep a professional distance it's very hard not to become friends with the carer that you rely on so much, who comes to be part of your life, is the first person you might see after a sleepless night and is the one always there for you day in day out. For my mum this was a huge blow; they were taking away the only familiarity and support they both so needed at this time. Mum felt like a stake had been driven through her heart, her beloved Ray was dying and her carers were being taken away too. Bear in mind the monthly bill for my dad's care was running into four figures.
The community nursing team even tried one last attempt at getting continuing health care funding for dad and even 24 hours before he died they still turned him down. They said that the community nursing team visiting once a day to change the pump and the night sitter for the last three nights was the health-funded contribution to his care. What I now ask is: why should anyone at the end of their life have to pay for their own care to die at home?
How Ray's experience would have been different under a combined system
A big source of distress for Ray and his family was the traumatic process of the Continuing Healthcare assessment to determine whether his needs were a health or social care responsibility.
Under our proposals Ray’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 relieve his family of worrying about a care bill that ran into four figures each month. The purpose of the assessment would be to establish how his needs could best be met – not to determine whether the family or the NHS should pay. Everyone’s energies could then be concentrated on making sure that Ray got the care he needed.
The need to change the team of carers disrupted Ray’s care and caused distress to his family. Our proposal for a single local commissioner would help to streamline the process of arranging services so that it would no longer be fragmented between different teams and organisations. Sally-Ann has emphasised to us the importance of not setting the threshold for free care so high that few people would benefit.
We are grateful to Sally-Ann Marciano for sharing her story. Sally-Ann is on Twitter @nursemaiden.