If you are a patient or carer, or use care and support services, we are keen to hear from your direct experience of these issues. Share your views by emailing email@example.com or leaving a comment below.
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.
It felt like a process, we were just an inconvenient number causing extra work in paperwork that would always have the same outcome – no funding.
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?
My dad has vascular dementia. He is 77, very physically fit, has no cognitive understanding, and can be very difficult. After a very distressing emergency admission onto a mental health assessment unit, it was decided that he couldn't go back home with mum. Dad was assessed for continuing health care (CHC) funding (full NHS funding), and this was declined, so in finding a home for him we were limited to those that the local authority would fund.
His needs are very complicated and hospital staff told me that there were 'very few' homes that would be able to cope with him.
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 to this home, mum (who is 73) would have had to spend two hours on a bus, each way, changing three 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 then 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 as it meant dad would be fully funded by the NHS; however, we couldn’t understand why, only six weeks earlier, he didn't even meet the basic criteria.
CHC funding is more generous and dad was subsequently placed in a home four miles away from where he has lived for 50 years and where family and friends can visit him easily; he is visited around 4/5 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 am appalled by the whole system and the way in which dad was let down by his care co-ordination team.