The number of children with a learning disability or autism living in inpatient units is double that recorded before the Transforming Care programme began, a new analysis of NHS Digital data from Mencap has found.
The number of children living in inpatient units, likely to include dozens detained in locked wards, increased again in July. NHS Digital has reported a figure of 255 for last month, a rise on the total reported in June and more than double the number shared when the Government’s Transforming Care programme began.
The latest data release comes after the government announced £33 million funding for Mersey Care NHS Foundation Trust to open a new 40 bed low secure inpatient unit for people with learning disabilities last week.
Campaigners have expressed anger and disbelief at the move, which comes with the CQC regulator midway through an audit ordered by health secretary Matt Hancock to establish exactly how many children with learning disabilities and autism are currently living in locked wards and / or experiencing restrictive interventions.
The interim update published by the CQC in May showed at least 62 people were know to be in segregation. This included 42 adults and 20 children and young people – some as young as 11-years-old. Sixteen people had been in segregation for a year or more - one person had spent almost a decade in segregation. The longest period spent in segregation by a child or young person was 2.4 years.
The CQC has so far visited and assessed the care of 39 people in segregation, most of whom had an autism diagnosis.
The regulator has said it will seek clarification from Mersey Care NHS Foundation Trust about how funding the opening of a new 40 bed unit “supports the agreed national policy to move away from large institutional styles of accommodation.”
Learning Disability Today has also approached NHS England for comment.
Dan Scorer, Head of Policy and Public Affairs at the learning disability charity Mencap, said: “While the CQC is having to defend itself against tribunal appeals from providers trying to open up new institutions, the Government is putting more money into the NHS to create new institutions to lock up people with a learning disability."
"We know that children and adults with a learning disability are at increased risk of neglect and abuse in inpatient units – just like the new 40 bed unit in the North West which has secured multi-million pound backing from the Government."
"The Government and NHS England are making a mockery of their Transforming Care programme – which promised to close inpatient beds – by opening large inpatient units. This human rights scandal can only be solved by sustained investment in good quality social care and a robust cross-government plan to ensure children and adults with a learning disability get the support they need in the community – hospitals are not homes."
Vivien Cooper OBE, CEO of the Challenging Behaviour Foundation, said: "It is absolutely shocking that the number of children in units has gone up for the second month in a row."
"In June this year, we saw the the highest ever number of reported uses of restrictive interventions in inpatient units – 3,075 restrictive interventions, 770 of which were against children."
"This is the second month that NHS Digital has failed to publish this data when we need transparency about what is happening in these institutions. We know the human cost of this from our work with families of children, young people and adults who are subjected to inappropriate physical restraint, overmedication and being kept in isolation when trapped in these units."
"It is indefensible that there is no national plan for how the Government and NHS England will address this domestic human rights scandal. We know what works but we need funds and resources directed towards building up the support in the community that children and adults with a learning disability and/or autism need."
"There is clear evidence from a range of sources that the system is broken and causing people harm. We urgently need a clear plan of action from Government about how they fix it that is prioritised across Government and delivered."
- See also: Advocacy funding announced as use of segregation, restraint and seclusion highlighted again
- See also: Regulation rating should better reflect realities, charities say
Sue Battin, mother of Joe who was locked away hundreds of miles away from home in the inpatient unit Whorlton Hall, said: "I cannot believe anyone in NHS England and the Government believe that plans for the 40 bed, low secure unit next to the high security prison in Liverpool is appropriate to meet the needs of vulnerable people with learning disabilities at a time they need extra support by people who know them well in their local area."
"This move just shows they have not listened to people like my son, who have lived through the horrendous experience of being sent hundreds of miles from family and friends at a very difficult time in their lives and their families."
"We know first-hand that small local specialist services need to be available to people when they need it so they can stay close to their family and the team who support them."
"This would also enable people to return to their home instead of people being trapped in these large hospital settings. This is a disgrace. It will just reinforce people’s views that people with complex needs need to be locked away. I am horrified and concerned that people in positions of power believe this to be acceptable."
NHS Digital has not published data on restrictive practices in inpatient units since June, when over 3,000 instances of practices such as physical or chemical restraint were recorded in one month. 770 of these were imposed on children.
"The rise in restraint figures could in fact be linked to improvements in coverage and better reporting of data," a spokesperson for NHS Digital previously told Learning Disability Today.
"The restraints data has been delayed for two months. This is due to operational issues in gathering data from all service providers following the implementation of a new data collection system. In line with the Code of Practice for statistics we have highlighted this delay publicly and the reason for it."
"It is not being withheld and will be published on September 19."
"NHS Digital’s statutory role is set out in the Health and Social Care Act 2012, where we are required by law to publish statistics on a range of health and care subjects – including monthly statistics on Learning Disability Services."
Yesterday Alexis Quinn, an autistic campaigner from Kent, delivered a petition with over 200,000 signatures to Number 10 Downing Street.
The petition supported by the National Autistic Society calls on the Government to "end the scandal of autistic people inappropriately detained in mental health hospitals."
Alexis was detained under the Mental Health Act in 2012 and spent almost three-and-a-half years in different mental health hospitals. She says she was restrained over 90 times and on one occasion was held in long term segregation (solitary confinement) for eight days.