Yesterday (4/2/15), Thomas Rawnsley’s family had to make the agonising decision to consent to his life support machine being switched off.
It’s difficult to imagine what any parent would feel at this time but imagine too their preceding two years of Kafka-esque hell……..Mum Paula and her wider family have had to contend with watching powerlessly as their precious Thomas was shunted like a piece of meat between different care (care??) placements. None of the placements could meet his needs and during his stay in one of them, he suffered abuse by staff. One member of staff received a suspended sentence in February 2014 for this abuse.
Thomas entered state care in an ATU in October 2013 as a result of a section that came about because the staff at the bungalow in his supported living facility claimed that his ‘mistrust’ of them was a threat to them.
When the section was lifted, he was detained under an order from the Court of Protection (Protection??.......really? Protecting who? Not Thomas……) The family had no access to legal aid and no way of meeting the costs of legal representation to challenge the CoP order. Paula was (and still is) gagged by the CoP from reporting any details relating to his care.
When I read between the lines, my translation of what the staff in the ATU meant when they described Thomas' 'mistrust' of them as a threat is: ‘he has autism, Downs and learning difficulties……..he’s sooo difficult! We can’t get him to do what we want and his ‘challenging behaviour’ is too much for us!!’
Ok so anyone who really takes the time to understand people with complex needs knows that ‘challenging behaviour’ is usually a result of the environment they are in – sensory environment, physical environment and interpersonal environment. That last one is the lynchpin in my view. Trusting relationships are so powerful and so fundamental to our human existence yet this aspect of the environment is usually the one that is ignored. Ignored because of ignorance, indifference or convenience?
Instead of care built around trusting relationships we get the use of behaviourist principles, physical restraint and the chemical cosh. There’s only one one-way relationship there and it’s about the staff being in control. It’s all about compliance and conformity.
There is so much indifference around meeting complex needs amongst many of those working in the industry. And my god, it is an industry: it sure makes fat cats out of all those care home directors and provides a reliable cash cow for charity providers…..and all this feathering of the corporate and charitable nest is at the expense of you and me the taxpayer.
There are some good care homes and facilities of course, but we have too much evidence now that this is the exception rather than the rule……certainly for the larger institutions. Connor Sparrowhawk, Winterbourne View, Nico Reed. Eden Evans, Jack Beres, Tianze Ni. Josh Wills, Chris McCarrick, Stephen Martinez. Steven Neary, Claire Dyer.
Trying to ‘get’ people with complex needs to do something is the opposite of what needs to happen. A ‘getting’ communication style and way of interacting is going to lead to explosions and dysregulation because of the difficulty people with complex needs have with demands being placed on them. Conversely, if there is an invitational communication and interaction style embedded within a trusting relationship and a support plan built around the person’s preferences, you have the person’s own intrinsic motivation that fuels engagement……and the ‘challenging behaviour’ is minimised.
Are workers in care homes and ATUs given training and support to help them understand and implement this kind of approach? Are they paid at a rate that recognizes and develops these competencies? You know the answer.
The average cost of a placement in an ATU is £3,500 per person per week. Yes, you read that correctly. Yet the top brass big cheese (rich) directors in their board rooms and executive offices on their executive salaries can’t manage to pay the care and support staff a wage that is reflective of the competencies needed to provide quality care and support to people who need such placements.
So people who are in crisis go into a placement where the sensory, physical and interpersonal environments make ‘challenging behaviour’ a fait accompli. And where are the commissioners, the CQC, the Winterbourne View JIPs and Concordats, the National Audit Office reports, the charities that claim to represent people with complex needs in all this? The bodies that are supposed to be safeguarding, scrutinizing and regulating are part of the problem.....they bluff and bluster and wring their hands and nothing changes. And as for the Court of Protection….ignoring the views of families who know their dudes best and slapping gagging orders on anyone who dares to tell the truth about what is happening to their kinfolk.
Over the coming days and weeks we will find out more about the uncertainties surrounding the events that led up to Thomas’ death. For now we need to put our energy into making sure Paula and her family get as much support as possible – emotional, financial, legal, campaigning…..whatever they need.
It may be that an inquest is needed. Legal aid isn’t available for families to access legal representation at inquests. But of course the local authority responsible for Thomas’ care have access to their own funds (courtesy of yours and my taxes) to employ the best solicitors and barristers. Where’s the justice in that?
A fund has been set up to help Paula and her family. Please donate and share the link to the fund (http://www.gofundme.com/laewnk) as much as possible – legal representation for an inquest will cost about £20K.
We need to make sure the family gets Justice for Thomas.
Justice for all the dudes.