Its AD 61 and you are standing in a field somewhere in the Midlands and you are angry, raging at the injustice of it. Your world has been conquered, Boudicca’s daughters have been raped and along with well over a 100,000 of your fellow Britons you are hell bent on having your revenge and on punishing the Romans for what they have done. Driven by your indignation and convinced that you have right and numbers on your side, you and your fellow tribe members charge at the Romans – a seething mass of rage surging across a field. Unfortunately, it was a field of the Romans choosing. It was open, yet narrow and despite being massively outnumbered, their organisation and superior tactics meant that they were able to slaughter tens of thousands of Britons for the loss of only a few hundred Romans.
There is something about this scenario that reminds me of us. I’ve lost count of the number of times I’ve heard the parents of disabled children and adults described as warriors and we are that. And time and again you see a new generation of fresh faced families drawn into the choice between collaboration and conflict. Should we work together with the system to improve services for our children and then adults? Or should we arm ourselves with a Code of Practice and a phone call to IPSEA and embark on a lifetime of struggle?
It’s a Hobson’ choice. On the one hand working together with practitioners is essential if we are to get the best outcomes for our daughters and sons, and on the other hand if you don’t struggle, if you don’t fight for what is right the system will ignore you until you become a crisis. When that happens we all Charge at the Romans only to be mown down by their might and intransigence.
On Wednesday night Dispatches showed a documentary into some of the care that was being provided by St Andrews Healthcare in Northampton – it was harrowing and disturbing viewing and the families that took part in it displayed enormous dignity and courage. The programme rightly sparked a wave of outrage across social media of which I was a part.
The next day St Andrews responded with a statement stating that the programme was biased and that the film-makers had not given them a fair right of reply. True or not, there were a number of other things that hadn’t been done. As somebody who has spent a lot of time researching how Transforming Care is being implemented, I knew how cursory and poor the coverage of that had been. I knew that the programme researchers didn’t know how poor St Andrews implementation of the New Code of Practice is, and why that is so important, and that this failing is spread across the whole sector. I also knew that the large providers like St Andrews hold commissioners desperate to find a bed for somebody in crisis, to ransom. In short the programme makers had been over-reliant on the stories of the families and had failed to support their courage with the research and rigour that the subject deserved.
It was probable that this lack of rigour was one of the reason’s that the story didn’t get that much additional coverage in other media outlets and it was probably for this reason that people on social media were popping up to defend St Andrews. One of the people who popped up to defend it was a film-maker who apparently argued that a film he had been involved in making showed that there was another perspective. His film called “In Our Own Words” (which had undoubtedly been commissioned by St Andrews for marketing purposes) was presented as the voices of some of the people who had been at St Andrews and late yesterday it was put on the 7daysofaction public campaign page. Where it was greeted with the comment “Fuck the fuck off & then fuck off some more” and 14 likes. The charge across the field was in full flow. There was no thought that these were the voices of young people and how this might look, there was just rage and indignance.
However, justifiable anger might be. It is in moment’s like this that the voices of families and their supporters become instantly dismissable. Whilst it is perfectly reasonable to challenge the independence and balance of a video, mindlessly attacking a representation of the experiences and voices of young people makes the marginalisation of families so much easier to achieve – rather than being experts in the culture of our sons and daughters – we become an unreasoned mob.
St Andrews is a part of a huge industry that has grown up around the care of people who are in crisis. It is an industry that has its own interests and its own agenda. It has evolved out of an era when people with learning disabilities were often seen as less than human and where the voice of the clinician is seen as un-challengeable (not much change there). Some of the people who work in it are good people trying to make a difference, some are not. It is a part of the healthcare system that operates differently to other parts and it is far more affected by the decisions of healthcare entrepreneurs than much of the rest of the NHS. It is an industry that is expert in how it presents itself and is more than capable of hiding itself behind the voices of young people.
That is what we are fighting. If we charge at it without thought, we will get slaughtered, at least in public relations terms. But it is vulnerable. It is vulnerable to the rights of the people who go there, to the concerns of their families, their practitioners, their regulators and their commissioners. All of the people with a responsibility for a person’s well-being and best interests.
Norman Lamb was the Minister that began the attempt to Transform the Care of in-patient provision following Winterbourne View. Yet, despite his best efforts as a Minister and since, and the efforts of a great many people, not enough has changed. But it still can and I genuinely believe that if we all work together we can change an industry that has brutally resisted transformation. But if we as families want that to happen and it won’t happen without us – the whole “Charging at the Romans” thing – it’s really got to stop.