Last week we hit a bureaucratic brick wall - an NHS brick wall. Along with thousands of other families in the UK, we are struggling to ensure an adequate funding package for the care for a much-loved 90-year old relative. We arrived with our faces facing the brick wall during and after a 5-hour uninterrupted meeting during we were being closely questioned throughout. It was the sort of meeting which leaves you feeling demoralized and even demeaned. There was little of the human touch. To be fair, the team did try to acknowledge a human dimension here and there. But it was clear that a financial machine and a system were responsible for the questionnaire and the approach of the leader using it. As the session finished, we sat there flabbergasted that a level of care that has been operative for the past four years, had now been withdrawn. We were exhausted. And perhaps worst of all, furious with ourselves for not being better prepared for what we expected to be a routine process.
That experience alerted us to other brick walls in the news much more significant and much worse than ours. Our Prime Minister, Theresa May must certainly (as we write!) be facing one! Some of the Windrush generation have faced a ‘hostile environment’, huge brick walls of resistance to their attempts to secure the right to live in a country where they have spent most of their lives and whose economy they have supported for decades. Then there is the whole fight over the government’s plan to introduce universal credit which leaves some vulnerable people seriously at risk. And powerless to do much about it.
A couple of days after our interview we read the words of a doctor describing ‘the metric-driven way that we practise medicine now…. where patients can become units to be processed, problems to be solved.’ As family members of one such elderly and vulnerable patient, that’s exactly how it felt. An over-simplified system was being used to simplify and pigeonhole her very complex needs.
As two professional people, we are familiar with the dilemmas arising from working to hold the tension between the individual and the system. But we’re used to being on the more powerful end of the relationship! Our experience last week reminded us what it feels like to be on the more powerless end. It was a salutary reminder.
Brick walls are not easily budged. The machines of bureaucracy are everywhere and they can be very intimidating. We are considering an appeal - but that will need both will-power and energy. It will involve still more brushes with bureaucracy. And there is no guarantee of success even though we think we know reasonably well how institutions work and how to find our way around. This system is a lot bigger than we are.
The whole experience has reminded us of the models that Professor Alan Gopnik of the University of California, Berkeley uses to describe different sorts of parenting: carpentry and gardening. They can equally apply to different sorts of caring. Carpentry is about precision and a degree of perfection. Gardening is about co-operating with nature’s systems to create an environment where life thrives. We shall continue to advocate for care for our aunt as a means of promoting a care system where human rather than mechanistic values govern.
Doctors and social workers have told us that our aunt is fortunate to have family who will vigorously seek her best interests. Not everyone has. That is why all of us need to be aware of inhumanity wherever it appears and work personally and politically to humanise systems. A little informal advocacy goes a long way.