Family members of young people with a learning disability or autism are often excluded from being given appropriate information and making decisions about their child’s care.
During a House of Commons Human Rights Committee evidence session on Wednesday (9 January) about the detention of young people with learning disabilities and autism, Labour MP Karen Buck told a panel of witnesses that politicians had heard from ‘concerned parents’ who felt actions taken by services had been detrimental to their relationship with their child.
The committee was told by the panel, which consisted of Dr Paul Lelliot (pictured), deputy chief inspector of hospitals at the Care Quality Commission (CQC), Ray James, national learning disability director, and Dr Jean O’Hara, national clinical director, learning disabilities, both from NHS England, that grounds for exclusion were often for confidentiality reasons.
Lelliot said a mental health act review report, which was published in December, acknowledged that family members were often excluded from being given appropriate information and involvement in decision making.
He told the committee: ‘I think there is a problem in this area. I think the Royal College of Psychiatrists has issued guidance about the appropriate way to involve family and carers both in receiving information and decision making about people’s care. I think it is an issue and I think there are many clinicians around the country who haven’t got it right. But I am drawing on my past clinical experience because I was a consultant psychiatrist.’
Between 250-260 children and young people with a learning disability or autism are detained in England, with the figure having more than doubled since 2015, when the number was 110. The reason for the rise was due to changes in recording cases and data collection, James said.
Committee chair Harriet Harman MP asked if there should be a requirement for parents to sign a document, anonymously, answering questions relating to their child’s detention at a service, including appropriateness of location, quality of treatment, and whether complaints were listened to when raised.
She said: ‘Why don’t you put it into their [the parents] hands in addition to yours because you [CQC] are the macro inspector and you’ve got teams of inspectors professionally going in, but you must wonder sometimes whether or not you’re missing something that is actually going on that parents know about.’
Harman said this would give the regulator a much better picture about whether a complaint was an exception or not.
Responding, Lelliot said every effort was made to talk to families as they offered a ‘fresh pair of eyes’ on the quality of care. Adding: ‘What I think you are suggesting is a very interesting idea. I’m not sure how to put this but if we had the funding it is something we would think about.’