Only democracy can humanise the care system

 By Niall Crowley

A few years ago, my mom, then aged 79 and living independently with support, was admitted to hospital for what turned out to be an intestinal blockage. She recovered quickly, and was well enough to go home in a few days, but due to completely unnecessary bureaucratic procedure she was kept in hospital for weeks.

We, her seven grown-up children, were told that if we went against hospital procedure and took her home they would instruct social services to remove her care package and home physio, something we’d spent a long time fighting to put in place.

Mom spent Christmas and New Year on a very sub-standard long-term ward for no good reason. And she wasn’t the only one. I was told by staff that most of the elderly patients on the ward were being kept in over Christmas for bureaucratic rather than health reasons.  Some eight weeks later, with no sign of movement with hospital bureaucracy, we took her home.

She could no longer walk and was unable to feed herself. She was totally dependent and spent the last 10 years of her life bedridden. We managed to care for at home, but only with extensive modifications to the house (she had wanted to move into one of the old people’s bungalows on her estate but they had all been sold off), three care visits a day and specialised equipment to help her in and out of bed. This and other subsequent experiences of how destructive NHS and bureaucracy and over regulation can be, got me thinking about how we care for our elderly. It led me to conclude that we need to find a way to humanise the system.

Care by community

Care homes and long-term geriatric hospital wards should be run in conjunction with, and possibly by surrounding communities. What I mean by that is that people in the community should play a decisive role in the support and direction of care, with the specific objective of making them as human, civil and integrated as possible. The system as it stands is overly regulated, too bureaucratic and consumed with procedure. It has shown time and again, even well before the current lockdown situation, that it is incapable of delivering humane long-term care. Families are routinely shut out of, or held at arm’s-length from their loved ones once they are in the care system. We know full well that the lack of intimacy and personal contact with friends and relatives often has a devastating impact on elderly patients and residents. Also, the valuable experience and knowledge that family members have gained from caring for their loved ones is rarely used, but all too often dismissed with a leave it to us, we know best, by a system that so often is incapable of seeing anything beyond ‘procedure’.

We need to humanise the system

We saw during the first lockdown how quickly people sprang into action, were prepared to help and support those isolated and in need. People showed incredible generosity, resourcefulness and imagination. People demonstrated a genuine social solidarity that helped get us all through a very difficult situation. Unburdened by red tape and bureaucracy, people did a much better job than local councils, who though well resourced, were slow to act. In some places local councils eventually took over the work that ordinary citizens had begun. We could ‘twin’ streets or neighbourhoods with specific hospital wards and care homes. Groups of volunteers could be selected by lot and serve for a set period of, say, six months, giving up a few hours a week.
It wouldn’t need to be compulsory, but promoted as an act of good citizenship.

I’m sure many people would step up and once the programme got going it would become a normal part of life. People would find it a very rewarding experience, I’m certain. Volunteers would work in conjunction with existing staff and management, with a specific brief of making the lives and experience of residents or patients as humane and homely as possible, and keeping the whole system focussed on that task. Each home or ward would have a steering committee, with representatives from care and medical staff, citizen volunteers and care staff. All citizens would take a stint on a committee, so everyone gets a turn, as well as perform other duties.

As well as focussing on improving the quality of life of residents and patients, the task of the citizen volunteers would be to find ways to improve the experience of residents’ and patients’ family members. Citizens would work on a range of broader tasks that could include anything from finding ways to integrate elderly residents better with the community, with the younger generation – nurseries in care homes or student lodgings for instance, improving specialist equipment, fundraising, working with architects on improving care homes, or private homes for more independent living, offer valuable insights for medical research, and a host of other things.

I think these measures would really change our view of the elderly and their place in society. It would definitely begin to heal the generational rift that has emerged over recent decades, and help create better, more well-rounded citizens of all ages. No longer would we see the elderly simply as a burden, and people would view the work they do with them with a real sense of satisfaction. It would massively improve the morale and position of professional carers who would be working in a sector that would be so much more full of life and joy than it currently is.