Where do we go from here? A response to the Whorlton Hall scandal

Kate Sibthorp is a mum to a daughter with learning disabilities and autism. She is also a member of the National Co-production Advisory Group (NCAG).

I’m often disappointed and even shocked by the stories I hear about people’s experiences of our care system. But the Panorama exposure of the appalling treatment of people at Whorlton Hall is viscerally distressing.

If you are the parent of someone with autism or learning disabilities, it stays with you and keeps you awake at night. There is some small comfort in knowing that Whorlton Hall has been closed down, but experience tells me there are more places like it still out there, masquerading as places of good care and treatment where people are safe. We had the Ely Hospital scandal in 1968, Winterbourne View in 2011 and many stories of individual people suffering, and continuing to suffer, in Assessment and Treatment Units across the country. Whorlton Hall is clearly not the first, and won’t be the last.

People ask whether Making it Real could make a difference in places like Whorlton Hall. I have to say I honestly don’t know. The thing about Making it Real is that organisations have to want to provide good personalised care and support, and they have to want to get better at it. They have to believe in talking to the people who access their services and working together as equals. The culture in that place was the antithesis of the value base that underpins Making it Real.

There are 49 We Statements in Making it Real, describing key things that organisations do when they’re good at personalisation. I don’t think a single one of them could be applied to the Whorlton Hall we saw on television.

So where do we go from here? Staff from Whorlton Hall have been arrested and some will no doubt be punished. There will be investigations to try to unpick how the wickedness of that place evolved and continued its hateful practices unchecked. I worry that we’ll just have a ‘Whorlton Hall Inquiry’ that reaches conclusions and makes recommendations that are put in a metaphorical box labelled ‘another sad scandal’ without acknowledging the systemic failure that spawned it.

Here are some things that I think need to happen

1.Stop labelling people as a means of medicalising them and subjecting them to blanket, impersonal care and support.

Far too frequently, society medicalises autism and learning disabilities;they are not illnesses or diseases. You can’t cure someone of autism. Far too frequently, society labels people with autism or learning disabilities as violent, aggressive, challenging, non-compliant… no – they are communicating, desperately, in the only way they can, in the face of things that are frightening or hurting them. We need to listen to them, not restrain them.

2. Start supporting people and families from childhood to give everyone the best chance to be in control of their lives.

When my daughter was at special school, parents were invited to an evening with a psychologist who talked about some of the ways in which our children challenged us. I still remember a key thing from that night 20 years ago. Try to figure out what your child wants you do to as a result of their behaviour and then don’t do it or you will reinforce the behaviour you don’t want.
That one snippet was a great piece of advice. Where do parents get advice from? What would be the impact of every parent having the chance of a session with a psychologist? Or just having someone to help think through how best to manage difficult situations?

3.Do the maths and stop bickering about who’s footing the bill.

There are many stories of people who’ve moved successfully from institutions to supported living. They tell of people moving to their own home, close to their family, and being supported 24/7 by a team of personal assistants who absolutely ‘get’ the person – what makes them tick and how they need to be supported. Of course, this level of support comes with a price tag, but it’s always less costly than the institution. This option should trump the alternative of support in an institution and always be tried first.

I fear it’s in the interests of Local Authorities for people to go to hospitals like Whorlton Hall, because the NHS picks up the bill, not them. It makes no sense to people and families; we pay our taxes to both local government and the NHS. And the costs of institutionalising people go way beyond the monetary value, causing distress and impacting on people’s mental health and wellbeing.

4. Stop employing people who are not suitable to work in our care system.

There seems to be an assumption that, as everyone has to get up, wash and dress, cook meals, go shopping etc, anyone can take on role of caring. We do it for ourselves, so we should be able to do it for someone else. We tend to recruit care workers by assessing them against these basic, practical skills. We need to root recruitment in the right values for the job: academic intelligence and qualifications are far less important than emotional intelligence. We need people who believe in equality, who value diversity, who know how to enable and empower people, who see things from others’ points of view, who will stand up and challenge things that are wrong.

5.Change the way we do inspections and how we monitor people’s support and treatment.

According to the BBC website, Whorlton Hall had at least 100 visits by official agencies in the year before the abuse was uncovered. The Care Quality Commission will have to defend its decisions and review its practice. For me, two things are certain. Firstly, people like the staff at Whorlton Hall will conceal what they’re doing from any visitors, putting on a show of being caring. Secondly, it can be very difficult to interview people with autism and learning disabilities, as I discovered when I worked for the CQC as an Expert by Experience, several years ago. Although I always tried to speak to people one-to-one, I sometimes needed help from someone who understood how the person communicated. In any case, staff would see who I was speaking to – in a place like Whorlton Hall, I have no doubt that people would have been intimidated and threatened by the staff into saying everything was all right. I got my best information from visiting family members, particularly those who were there frequently – another problem when people are sent miles away from their families. But it’s not all about the CQC. Who were those other official visitors? Medical professionals, social work professionals, LA and CCG quality monitors? The roles of these people also need to be reviewed.

So I think Making it Real can be a valuable resource in all these areas of concern. Organisations can use it to self-assess their practice, along with people who access their services, against the I and We Statements. It can help to raise aspirations, prioritise strategies and set goals for improvement. If you are part of an organisation that wants to get better at delivering good, personalised care and support, then please, use it. We still have a long way to go. Meanwhile, my heartfelt gratitude goes to the BBC and their reporter, Olivia Davies.