An industry of fear and violence – when everything else is gone

One of the things I’ve learnt about being the father of disabled sons is that conversations with practitioners aren’t always exactly about what you think they are about. You might be talking about the details of a care plan or something that you’ve done; but certain things or actions on my part might trigger a micro-assessment in the mind of the practitioner I was talking to. Is what I was doing age appropriate? Was I being overly tactile with by deaf-blind step-son? Is something that my son said an indication of his idiosyncratic use of language, or does it indicate something more sinister.  Safeguarding the well-being of vulnerable people is a core part of all practitioner’s responsibilities not just social workers and it is their responsibility to put the interests of the people I love ahead of mine. So, I’ve always been happy to accept timely suggestions about how I might be able to do things a little differently. But that kind of informal preventative safeguarding requires time and trust and is becoming increasingly rare and now safeguarding is almost invariably about the responsibility that practitioners have to identify harm being done to vulnerable people after it has happened. But safeguarding isn’t just a responsibility, it is also a power and as with all powers its use is fraught with danger.

I was reminded of this when I read one of Mark Neary’s tweets recently:

“Whenever I mention our encounter with Community DoLS, I can guarantee that I’ll get at least 1 reply that feels I need reminding that disabled people need safeguarding from their families too”

It’s a tweet that is rich in meaning. There is resignation; an acknowledgement of the self-evident truth that sometimes disabled people need to be protected from their families; and there is the more sinister undertone that Mark with all of his experience of the system needs to be aware that what happened to him was done with the best of intentions, because after all “disabled people need safeguarding from their families too”. Unfortunately for Mark and for all of us the stats on the abuse of vulnerable people don’t do us any favours.

According to “Abuse of Vulnerable Adults in England – 2012-13, Final report, Experimental statistics” which amongst other things found:

Physical abuse and neglect were the most common types of abuse reported in referrals, accounting for 28 per cent and 27 per cent respectively of all allegations. Alleged abuse was more likely to occur in the vulnerable adults own home (39 per cent of all locations) or a care home (36 per cent).

The source of harm was most commonly reported as a social care worker (32 per cent of all perpetrators) or a family member (a combination of the Partner and Other Family Member categories, 23 per cent).

In these statistics, scepticism about and the judgement of families is legitimised, and with that legitimation comes the power to make families the problem and the threat. It means that As Rob Mitchell put it today in the same twitter thread:

The state creates an industry of fear & violence. It’s enshrined in legislation. It convinces people that financial scams, coercion, bullying, risk & abuse happens at every turn. It then sells people state intervention as insurance against the fear. 

But are we the problem and is increased surveillance and state intervention in our lives always the solution? Unfortunately, sometimes we might well be the problem, and at times intervention must happen, but think about it for a moment. Why are vulnerable people harmed, why do they need to be protected? Well there is always malice and the desire to do harm to other people. But not all abuse happens because of a desire to do harm, sometimes it happens out of ignorance or out of not knowing how to deal with certain kinds of situation.

There is a presumption in the data in the report I quoted, that the physical abuse carried out by a social care worker is the same as the physical abuse carried out by a family member. The report tells us that social care workers are responsible for more harm than any other group. Yet social care workers are trained, they receive supervision, are paid and can go home after their shift. From other sources and scandals we know that settings that are poorly run with untrained and unsupervised staff are more likely to have an abusive culture than organisations that are well supervised with well trained staff.

Whereas families get very little guidance, support,  or training, they don’t get paid and are often in it for the very long haul. But what might cause a family member to harm a relative? As with social care workers there is always malice. But what we do know is that families are unlikely to have had any training or support. So, a husband or daughter, caring for an elderly relative with dementia who keeps wanting to leave the house during the night, is unlikely to have been taught how to keep them safe without using inappropriate forms of restraint or confrontation. The consequence can be harm and bruising. This would not have been an act of malice and with effective support and guidance that abuse by the family member might have been prevented.

In my experience the harm that families do to their loved ones often arises out of not knowing how to deal with difficult situations, or because they simply do not understand a person’s rights as adults. So, for me the question that comes out of the data in the report, and the undertones of the safeguarding advocate commenting on Mark and Stephen’s story is how often might the harm caused by a family member be prevented if they were properly supported and given training in safer ways of managing difficult and distressing situations? Or to put it another way if there was more support for families and less surveillance.

Unfortunately the sad truth is that as local authorities budgets come under increasing pressure and their safeguarding functions become the thing that gets cut last; then the ability to put in the kind of support that can and would prevent some forms of abuse is either cut or was probably never put in place in the first place.  What is left as Rob Mitchell put it, is the state’s “industry of fear and violence” because everything else is gone.

 

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If at first

I was gutted to hear that a young man we have been campaigning for as part of #7daysofaction has had to go back into the unit that he had spent so many years locked away in. And I have no doubt that the Director’s of the for profit private hospital that he has returned to will be as upset as I am that things didn’t work out the way that we hoped.  

It reminded me of when my step-son left the John Townsend Trust in Margate. He’d been subject to some appalling standards of care and we had decided to move him. And with the full support of the local authority and his CHC case manager we got him a new place. A transition process was set up and the new team spent weeks preparing for the move. This involved his new team spending a week at the John Townsend Trust getting to know my step-son and the way that he liked things to be done. I think it is fair to say that the reception they got was unhelpful to the point of being obstructive. Because all the team at the John Townsend Trust could see was the money they were losing. For them my step-son wasn’t a person with the right to a good life, he was a commodity, an income stream.

Now I don’t know how co-operative, the team at the hospital, to which he has returned, have been in all of this. They may have been brilliant, they may not have been. And none of us know if the new provider, was able to do the work they needed to do in order to make his return to the community the success that he and his family need it to be. We don’t really know why things went wrong and we don’t know what it will take for it to work next time.

What we do know is that if everybody gets it right it this can work, but that getting this right self-evidently isn’t easy. It will require the whole hearted commitment of everybody concerned. We might also want to be mindful of the fact that somebody somewhere has to be willing to try again. Maybe it would be the provider that tried and failed this time maybe not, few of us are in a position to make that judgement. But what this young man doesn’t need, is a situation where nobody is willing to risk being his provider, because of the criticism they would get for having tried and failed. What he needs is for everybody to dust themselves off and work out what has to be done, so that he and they can try again.

We need to talk about George …and Neil’s theory of change.

I was reading through some of the tweets on the #BawaGarba hashtag the other day and something occurred to me. George Julian was getting some pretty harsh treatment from a Doctor about her reasons for supporting the families of people with learning disabilities, commenting about a recent Churchill scholarship trip to Australia and some other stuff about how she was using us in her own interests. Now, I don’t agree with everything that George does or posts; we’ve disagreed with each other in the past and I have no doubt that we will do it again in the future.  As for her motivations, well why do any of us do what we do? For that matter why do doctors go into medicine? Is it because they are selfless or because they like the power they have over the people in their care? Ultimately it is nobody’s business but their own, what matters is what people do and the difference that it makes. And it was during George’s live tweeting of Richard Handley’s coroner’s inquest that I really understood the importance of what George does for all of us. She bears witness.

She bears witness to a struggle that she does not need to be a part of and whilst there are a great many others who support what we do, if we are honest about it, there are few who do it at such a cost to themselves. Think about it: there is the emotional cost of having to listen to what she listens to in forensic detail without supervision or emotional support; and there is the fact that George is a self-employed consultant and her biggest potential clients are likely to be in the public sector, in particular in local authorities and in health. Every time George posts something in support of families she probably loses a potential client.  

Anyway, the thing that occurred to me related to something that Neil Crowther had tweeted about how we need a theory of how we are going to change the system, if we are ever going to change it.  And he’s probably right, we probably do. Because the system that we are trying to change is passively or actively supported by everything that is powerful in health and social care; by institutions, by huge businesses, by the political ideologies of all the major parties and by the power of most of the medical professions. In that twitter discussion George Julian (and Sara, John Lish and Mark Neary) weren’t just arguing with individual anonymous doctors; they were arguing with all of the doctors who weren’t saying what they really thought; they were arguing with a profession that is yet to find the right balance between accountability and the right to make mistakes; they were also arguing with a profession that is itself under siege from a government and an electorate that believes the myth that you can have a first rate health and social care system, without being taxed for it.   

But our ability to change things for and with people with learning disabilities needs both a theory of how we are going to make that change and the resources to deliver it. At the moment, the only funding that is available either comes from the institutions we want to change or from businesses and organisations that have their own agendas.  None of which are likely to fund work that will transform the system that sustains them. So, it is almost inevitable that organisations that start off being radical and innovative, become cautious and conservative as they become dependent upon funding from within the system.

The only people who will fund the change that is needed is us; all the people who really want things to be different. Because the theory and the actions that will lead to change, will come from the stories that people tell and the solutions that arise out of them. Whether it is something that George has live tweeted, or a conversation that Jayne Knight has had with somebody in an inpatient hospital; or the stories of people who are struggling to live in their communities; or an event organised by Bringing us Together; or Mark Neary presenting to a parliamentary committee; or Julie Newcombe supporting a family; or Sara doing what only Sara can do. In the end, all the work that needs to be done to change the narrative and the system will fade away if we don’t come together and fund it.

Perhaps that would be a legacy to those we have lost.