Yesterday, Radio 4 broadcast a play about the Bournwood case, the case that led to the introduction of the Deprivation of Liberty Safeguards. It was beautifully written and the performances of the key players felt totally authentic.
A link to the play is here and the drama is followed by a studio discussion of the case which included Mr E and H’s solicitor:
I’ve seen a small handful of criticism online from people who felt that some of the professionals portrayed were unrealistic. For me, those scenes absolutely rang true and contained some of the greatest horror within the drama.
One particular scene graphically summed up the terrifying imbalance between the professionals and the family. It showed in the starkest of terms, how HL had been turned into an object and how the family’s years of experience counted for nothing. The scene involved Mrs E being taught how to support H getting undressed and ready for bed. This had never been a problem at home but to validate the “treatment” it was imposed on HL and Mrs E in the most brutal way. Obsessed with behaviour management programmes, an OT led Mrs E through a script that she was ordered to follow. The growing desperation in Mrs E’s voice as she realised the futility of this game but afraid of the consequences of challenging it, was deeply moving.
I cried because the scene hurled me back to 2010 and although 16 years on from Bournwood, I was put through the same indignity. I was called in twice, once at 7am and then the next day at 6pm to be taught how to support Steven with his bathtime routine. No matter that I’d been doing it for 19 years with no problems, the positive behaviour show was in full swing. I sat on the toilet as a shift leader taught me how to rinse Steven’s hair after shampoo and then I had to demonstrate what I’d learned as she marked me on an “parental observation chart”. I had to bite my lip hard to stop myself crying or shouting. It was abject humiliation.
At the same time, another element of the “treatment programme” was speech therapy and I had to be retrained in how to talk to Steven. I was given several laminated guide cards with instructions for me on. I’ve still got them in a box in my garage: “Never use more than 3 words in a sentence”. “Stretch each vowel out like a piece of plasticine”. I had the shaming experience of being observed and marked whilst supporting Steven make a toasted cheeeeeese sandwich. All the time having to deal with Steven’s bewilderment that I was talking so peculiarly. “Dad’s doing silly talking”.
The family is done up like a kipper. The outcome of Mrs E’s shaming was to add more and she was labelled “uncooperative”. The same with me. In their report for court, Hillingdon wrote: “we do not believe that Mr Neary will follow behaviour management guidelines”. The same stunt that was pulled on Mrs E in 1994, was used on me in 2010, was used on Sara Ryan in 2013 and is still being used on families today. First the family is labelled “uncooperative”. That moves on to “abusive”. And then questions are raised about your mental stability. It’s a standard template that gets more and more terrifying as you move through each phase of the accusations. Because it all means that a case is being built for your child never to be returned home. I wrote in my diary one day, “Steven may end up in a long term hospital because I talk to him in more than three words”.
One thing that bothered me with the play, especially from the assertion of the presenter was that things have changed dramatically since 1994. The drama covered the horror of H’s feet turning black because the staff used to stand on them as a form of restraint. That hasn’t changed. Just a couple of years ago, Jamie Newcombe’s arm was broken whilst he was being restrained.
Nothing has changed much. It’s true, since 1994, we now have two chunky pieces of legislation that are meant to prevent further Bournwoods. The Mental Capacity Act and the Deprivation of Liberty Safeguards were introduced but as the 7 Days of Action campaign revealed, they don’t even touch the majority of the 3000+ people currently detained. Just this month, we heard at the GMC Hearing into Dr Murphy (Connor Sparrowhawk’s psychiatrist) that she believed she was above the MCA and therefore, Connor’s rights were trampled on.
Precious little has changed. What happened to Harry still happens 23 years on. The complete randomness of admission. The total power of the responsible clinician. The absolute belief of the responsible clinician in their rightness. The blocking out of families for weeks whilst the institutionalisation takes place. The introduction of dangerous medication regimes from day one. The hostility towards families and the attempts to crush them. The ignoring or abuse of the law.
Mr and Mrs E are inspirational People. Driven by love and duty, they saved H’s life and fought for over 15 years to get the law changed to protect H and others like him in the future. Their ordinariness and humanity continues to expose the ludicrousness of the “State knows best” attitude that is so prevalent in so many of our services.
Mr and Mrs E – thank you for helping me and Steven. For being our friends. For making us laugh like drains at the hideousness of the system. For showing us that love can win through in the end.