Five days that rocked the learning disability care sector
Why the care of people with learning disabilities and autism is in need of urgent improvement
Five days in May highlighted why the care of people with learning disabilities is in need of urgent improvement
The week beginning 20 May rocked the learning disability care sector.
First there was the children’s commissioner warning about ‘unacceptable’ placements of children in hospital; second came warnings about the excessive use of seclusion and restraint; and then the third annual report of the Learning Disability Mortality Review programme was published.
But the worst was yet to come as a BBC exposé showed the abuse and mistreatment of patients at Whorlton Hall specialist hospital in County Durham.
people with learning disabilities or autism in specialist hospitals in England
Source: NHS Digital
The Panorama programme on 22 May united the country in disbelief and outrage that this could happen, particularly given the chilling similarities with the Winterbourne View scandal from eight years earlier.
It begs the question: could the same be happening elsewhere?
RCN professional lead for learning disability nursing Ann Norman says it ‘terrifies’ her to think it could be. But even if it is not, she says it seems clear there is too much average care because staff are not ‘properly trained and lack strong nursing leadership’.
‘There are huge vacancies in nursing posts and without good clinical leadership we risk these things happening elsewhere. The government and NHS England need to get a hold on all this urgently.’
But they have, of course, already tried. After the abuse at Winterbourne View was exposed, the then prime minister David Cameron promised it would never happen again.
Winterbourne View led to a series of reviews and inquiries that resulted in the Transforming Care programme in England and the drive to reduce the reliance on hospital facilities and the deployment of restraint and seclusion.
On neither count could it be said the government has succeeded.
Timeline of events in May
Monday 20 May
Children’s Commissioner for England Anne Longfield warns that an ‘unacceptably high’ number of children with learning disabilities are languishing in hospital.
Tuesday 21 May
The Care Quality Commission's interim report into the use of seclusion and restraint warns systems in place are ‘not acceptable’ – nearly half the cases examined have spent over a year in segregation. Meanwhile, the Learning Disabilities Mortality Review annual report raises concerns about care in one in ten deaths. Delayed diagnosis, poor care coordination and information-sharing are all criticised.
Wednesday 22 May
The BBC broadcasts undercover filming from Whorlton Hall specialist hospital, showing staff mocking, taunting, intimidating and repeatedly restraining patients.
Thursday 23 May
Health and social care minister Caroline Dinenage addresses the House of Commons, saying she is ‘deeply sorry’ for what happened at Whorlton Hall and promises action will be taken.
Friday 24 May
Police announce ten arrests have been made in relation to the abuse seen on film at Whorlton Hall.
Unmet government target
Ministers had set a target of getting the number of hospital beds in England being used down to below 1,700 by March 2019. It fell short by nearly 600.
times restrictive interventions were used on people with learning disabilities or autism in inpatient units in England in 2018
Source: NHS Digital
Meanwhile, the use of restraint has nearly doubled in England in the past two years with more than 31,000 uses of restrictive practices recorded in 2018 by NHS Digital.
The recently published interim report on seclusion and restraint by the Care Quality Commission (CQC) gave some pointers to why this might have happened. It highlights how the lack of community care forced hospitals to keep patients detained, and how the workforce did not have sufficient skills and training to deal with the most challenging individuals.
‘The staff seemed to have no insight into how to help calm and reassure patients. They were using punishment to control, which is totally unacceptable’
Simon Jones, RCN learning disability forum chair
These are perhaps two of the biggest failures in policy in recent years, according to RCN learning disability nursing forum chair Simon Jones. He says the nursing community have been pushing for improvements for some time – and in particular for a ‘strong focus’ on positive behaviour support (PBS), which is whole-person approach based on working with clients to help them to learn to manage their behaviour rather than seeking to contain it.
Mr Jones says PBS is crucial to improving the ‘quality of life’ of these individuals and is the exact opposite of what was shown by Panorama.
‘The staff seemed to have no insight into how to help calm and reassure patients. They were using punishment to control, which is totally unacceptable, and will cause distressed individuals to become even more distressed.’
Mr Jones believes the solution to the problems lies in setting up ring-fenced funding for learning disability services to ensure funds are not diverted elsewhere, as well as creating a new independent body in charge of commissioning with a focus on human rights.
But as well as commissioning, questions are also being asked about regulation. There were at least 100 visits by public agencies in the year before the Panorama programme, some involving teams of three people over several days. These included three visits by the CQC – one of which was carried out following the alarm being raised by a whistleblower – and 12 visits by Durham County Council in relation to safeguarding concerns. Neither body identified the mistreatment and abuse that has subsequently materialised, with the unit rated good by the CQC.
What is more, a former CQC inspector, Barry Stanley-Wilkinson, says he raised concerns about the unit in 2015 when he was working for the regulator.
The CQC has responded announcing there will be two independent reviews – one into how Mr Stanley-Wilkinson’s concerns were handled and one into the wider regulation of the unit.
of people with learning disabilities have spent more than two years in hospital in England
Source: NHS Digital
But learning disability nurse and director of PBS4 social enterprise Jonathan Beebee says to truly make progress there may need to be a much wider look at how people with learning disabilities and autism are treated more generally.
‘A light has been shined on a dark corner, but this goes beyond what’s happening in hospitals.
‘When someone with a learning disability or autism ends up in hospital, it’s actually a failure of care.
‘We need to go back to the start – and look at how they are supported and treated in society. We need to change attitudes as well as care.’
Catalogue of abuse and mistreatment at Whorlton Hall
An undercover reporter spent two months working at Whorlton Hall in County Durham. During her time at the 17-bed unit, Olivia Davies filmed staff abusing and mistreating patients.
Staff can be heard using offensive language to describe service users, with one calling the hospital a ‘house of mongs’. In another case, a service user is told by her care worker that her family are ‘poison’.
Two male staff members single out a female service user for abuse. Aware that she is scared of men, they tell her, in an effort to keep her quiet, that her room will be inundated with men. They call this ‘pressing the man button’, something which causes her great distress and was described as ‘psychological torture’ on the programme.
On another occasion, a male care worker threatens to ‘deck’ a service user, while another is told they will be ‘put through the floor’.
Six care workers also told the reporter that they have deliberately hurt service users, while incidents of physical restraint were seen. In one case, a client was held on the ground for nearly ten minutes, with one member of staff restraining him, while handing out chewing gum to colleagues.
- BBC Panorama (2019) Undercover Hospital Abuse Scandal
- Care Quality Commission (2019) Interim Report: Review of Restraint, Seclusion and Segregation for People with a Mental Health Problem, a Learning Disability and or Autism
- Children’s Commissioner (2019) Far Less Than They Deserve
- Learning Disability Mortality Review (LeDeR) Programme (2109) Annual Report 2018
- NHS Digital (2019) Learning Disability Services Monthly Statistics – Provisional Statistics (AT: February 2019, MHSDS: December 2018 Final)
Nick Evans is a health writer