Andrea Sutcliffe CBE, Chief Inspector of Adult Social Care at the Care Quality Commission
Going to the cinema is usually an opportunity to escape from the cares of daily life and be transported to a different world. But sometimes, the films we watch make us think that bit harder about we do.
Two films recently have done that for me. The first is perhaps the most obvious. Sanctuary is an Irish film about a group of people with disabilities on a visit to the cinema with their care worker. Two of them, Larry has Downs Syndrome and Sophie has severe epilepsy, want to use the opportunity to spend time together in a nearby hotel. I won’t give away any more of the plot as I hope you will go and see it if you can.
The story is authentic, at times hilarious and often heart-breakingly poignant. A clear theme emerges that the views of those “in charge” apparently matter more. The care worker, his manager, a policeman, a store security guard, a bossy hotel receptionist — an unending stream of authority who think they know best (though credit to the care worker for trying to be different). At one point Sophie says “all we want is to be together and everyone else is trying to keep us apart.”
The film reminded of the Brandon Trust 100 Voices session I attended in 2014. Exploring what the people they supported wanted, the theme of relationships featured strongly and one of the newspaper headlines of the future (a creative way to set long term goals) envisaged celebrating the marriage of one of the young women there.
We have a long way to go to make that a reality and Joanne’s story about her fiancee Lee shows that. I was therefore very pleased to see that NDTi and My Life My Choice have been awarded a grant to explore how the barriers that people with learning disabilities face in developing and sustaining sexual relationships can be addressed. I hope that their work will result in some real change.
One of the reasons I loved the film was because the actors were people with disabilities themselves — a brilliant example of how, if you concentrate on what people can do, they do! Credit to the Blue Teapot Theatre Company who worked on the film. This says it all:
“Our mission is to effect positive change in public consciousness concerning people with intellectual disabilities through the medium of theatre, allowing our members inherent talent and creativity to speak for itself.”
The second film is perhaps less obvious. Three Billboards Outside Ebbing, Missouri focuses on Mildred Hayes, the mother of a teenage girl who was abducted, raped and killed. Some months later, Mildred buys advertising space on the three billboards to highlight the lack of progress in the police investigation and ask why. It is a fascinating character study of flawed people with a mesmerising, powerful performance from Frances McDormand who must be a sure bet for the Best Actress Oscar.
The link to adult social care may not be quite so obvious as Sanctuary but it has certainly had me thinking — why does Mildred take such action and what does it tell us about how we should react when people are harmed in the health and care system?
In the film, the police have clearly had a difficult job but at one point Mildred says no-one spoke to her for seven months but they did when she went public. It is something we see time and again when families have been traumatised by poor care or mistakes or just want answers about what has happened — they are not kept informed. Even if the update is “no news” it is better for us to be proactive — the duty should be with us as health and care professionals to do this without expecting people using services, their families and carers to do the chasing.
And sometimes, they have to chase for a very long time as the wheels of complaints, safeguarding, regulatory or police investigations grind so very slowly. This is being brought into sharp relief with the inquest into the death of Richard Handley — a 33 year-old man with learning disabilities who died from complications of constipation. It is over five years since Richard died in November 2012; an intolerable length of time for a family to wait for answers. There was an inquest after my brother died and I know the torment my parents experienced in a seven month wait, I cannot imagine multiplying that by nearly 10 times.
George Julian is live tweeting the proceedings, shining a light on a process that many of us know little about. George acted as an expert adviser to CQC on the learning from deaths review. As I wrote at the time, the findings and recommendations, though focused on the NHS, have implications for all of us in adult social care and CQC: the need to be open and honest with families, prepared to acknowledge failures, learn and not be defensive applies across health and social care. The Chief Executive of Dimensions Steve Scown has demonstrated this in a candid blog exploring some of the issues raised by Richard’s death.
Think harder and act
A trip to the cinema can make us think harder about a better way of doing things that does not cause people who love each other to hide away or the bereaved to be further traumatised by an apparently uncaring system. But making us think harder is just the start. For it to be meaningful, those reflections need to turn into action.