This post has been written as part of the Justice for LB campaign.
Last summer I shared a table on a train with a man I’d never met before. It was a quiet carriage and he wanted to engage in conversation. I’m ashamed to admit that at first I was a bit reticent. I was travelling with my two children and between us we are used to attracting a bit of attention. I didn’t want to risk attracting any more.
He was a confident man, an academic who was interested in people. He immediately engaged with my children and was not phased by them. He was someone I’d have liked to have had a proper, loud conversation with, but we were in the quiet carriage and people were tutting.
I can’t remember how we got on to the subject, but he shared with me his experiences of visiting his mother in Stafford Hospital. As he described it, her care had been both severely lacking and delivered with conscious cruelty. He had been left unable to explain the lack of humanity in those supposedly caring for her and other patients and in those whose job it was to safeguard patient safety and communicate with the relatives of those who had suffered. What he described was not only an absence of care, it was planned cruelty and those who dared to argue otherwise were represented as being misinformed, unhinged and working against the common good.
Misrepresenting and discrediting those who act as advocates for vulnerable people is a theme that plays out with depressing frequency in the health and social care systems in this country. We the parents, the carers are misinformed, we are wrong, we are hysterical, we have got things out of perspective, we are awkward, we are standing in the way of normal service, we are disloyal, we kind of deserve the life we have.
Sara, the mother of LB (Laughing Boy) has found herself in this situation. I started following her blog just as LB entered the assessment unit where he would die either from ‘natural causes’ or from lack of care, depending on (in my non-expert opinion) who pays your wages. I was attracted to Sara’s blog because she writes with clarity, humour and compassion and because her photographs are lovely. Families of vulnerable children and young people get used to things being a bit crap, a bit worn out, a bit out-of-date and so it was refreshing to see something presented with style and grit. Little did I know that what I was following was a human tragedy about to unfold.
One of the ironies of health and social care is that when a tragedy takes place, a son dies, a mother is left unfed, the horror is then often made so much worse. Firstly, it seems that those with a professional role to play find it difficult to appear to care. They may care, but what matters is acting like you care, demonstrating it. Where ‘care’ is demonstrated it is around spurious things like reputation, PR and ‘patient confidence’ and I guess probably careers and budgets and funding. Underneath the guff, no matter how much of it there is, is the waste of a life and a family left in grief and loss. When the family try to get answers, the ‘bureaucracy’ effectively then tortures them by locking up communication and acting defensively in bizarre and cruel ways. It has systems which don’t lead anywhere, tests which cannot be passed, the simple and obvious is made complex and cumbersome until everyone apart from those grieving have all but forgotten what the original tragedy was. It leaves one wondering when personal morality became so negotiable.
Strong men and women, who lead a whole other life outside being parents and carers, who are perhaps professionals, experts in their field, well-practised, well-respected in what they do are stripped of all that as though it is of no import at all. Take off your robes of experience, your education, your talents, your knowledge and leave them in the bin at reception. From hereon in you are a nobody, you know nothing, you stand for nothing.
I was brought up to do the right thing, to tell the truth, to respect authority and to generally think the best of other people. I thought that ‘society’ generally acted in the best interest of its citizens and if you found yourself outside its protective walls then it was probably your fault.
Some years ago I went to the NHS for help. Our adopted child was displaying some extreme behaviours and to me (a non-expert) and to our Social Worker, was clearly traumatised and in need of some kind of therapeutic intervention. I sat in a crappy reception area, not yet realising that I had left the best of me in the bin at the door. We were seen by a consultant who either discredited or ignored almost everything I said and who steamrollered over issues I had expressly asked him to take care over. In my opinion (as a non-expert), he was an egotistical, stupid, know-it-all, know-nothing rude little shit of a man and his conclusions were sloppy and entirely wrong. I walked out of that crap hole crushed but nevertheless resolving to never ever seek the help of the NHS on matters of child trauma and adoption ever again. I should have complained, but those who have a caring or an extra parenting role will perhaps understand why I didn’t have the energy to do so. An earlier visit to our GP had resulted in the word ‘depression’ being used. Not only was I ill informed, I was mad too. I had fallen through the protective walls of society. It had been incredibly easy.
Since I’ve come out of the fog of exhaustion and secondary trauma that can come with caring for children who are deeply traumatised by their pasts I have connected on social media and in real life with many parents and carers of children and young people with additional needs, including Sara and have discovered that many of us find ourselves living outside the city walls.
How does this happen? How do job-holding, tax paying, law-abiding citizens, advocating on behalf of their vulnerable loved ones find themselves cast out and their loved ones on the receiving end of poor quality care?
Here’s my (non-expert) take on it.
- Experts and I guess I mean health and medical experts in the broadest sense here are designed to give information and not to receive it. Some of them are egotists. Egotists are not that great at valuing the talents and knowledge of others. It’s a classic power game – I have the power over you, you are the recipient of my wisdom.
- The NHS is apparently sacrosanct and staffed not by fallible humans but by angels. Criticise its angels at your peril. They can do no wrong. Wrong is in the eye of the beholder. This lack of critical thinking around any service is dangerous.
- Without strong and challenging leadership, tribes flourish in enclaves in health and social care, just like they do in other organisations. Tribes look after their own and don’t like to be encroached upon by ‘outsiders’ (the vulnerable people they are meant to be caring for and their parents). ‘You are not one of us. This is not how we do things around here. You are not welcome.’ Some of the members of the tribes are poorly paid and poorly educated, but I’m not convinced that’s an excuse for cruelty. Tribes operate under their own rules and codes of morality where it kind of becomes acceptable not to care and not to do things properly. If you’ve ever worked in a big organization, with lots of departments, you’ll know what I mean. Sometimes groups ‘go tribal’ because the organisation they are part of doesn’t value them. Sometimes it’s because its members enjoy being awkward and lazy and moaning about everyone else and they all egg each other on. They need to be encouraged to find alternative employment. When a tribe is in charge of booking out conference rooms it is annoying. When it is given responsibility for caring for a vulnerable person it is dangerous.
- There is no ultimate case to answer. When a young person, or an older person dies unnecessarily in the care of the state no one is in fear of being sat in a dock and they should be. When the state fails to point the finger it is tacitly saying it doesn’t take cruelty or lack of care that seriously. Threat of legal action focuses the mind when morality and care have gone missing. Those who disagree with me claim that the threat of legal action would only encourage cover ups and discourage whistleblowers, like the current state of affairs doesn’t.
- When vulnerable people are excluded from society to such an extent that ‘normal’ people never have to come into contact with them, they become something ‘other’; annoying to care for, or dangerous. It becomes acceptable to treat someone who is seen as somewhat less than human with a lack of humanity.
I asked the man on the train what if any conclusions he had come to about what causes some people to act in such a careless and cruel way towards those in their care. He shook his head. Everything he had thought he’d understood about people and compassion and care and morality had been over-turned.