See this list of other support organisations that may be able to help.
The Transforming Care programme
Last night (10th November) Radio 4 File on 4 looked at Transforming Care, revisiting Bethany’s story which they first covered in 2018. The programme examined the progress of Transforming Care, highlighting the high figures for restraint and seclusion and lack of progress towards moving children and adults into appropriate care in the community. File on 4 also shared Danielle’s story, an autistic young woman who continues to be kept in segregation in her current hospital where she has been for 9 months.
There have been numerous media reports and significant concerns raised by individuals and organisations, including the latest commissioned CQC review and report ‘Out of sight – who cares?’ about the use of restraint, seclusion and segregation for autistic people, and people with a learning disability and/or mental health condition. This report is the latest in a long line of reports identifying the same systemic issues (e.g. JCHR inquiry into the Government’s response to covid-19: human rights implications).
The CQC report confirmed again what families have been saying for many years, that many people with learning disabilities in hospital settings receive undignified or inhumane treatment and that individuals with complex needs are able to live a good quality life in the community with the right support. It recognises that there is currently a failure to offer support at the point people need it, which often leads to restrictive interventions or inappropriate admissions.
The Transforming Care programme was established in 2012 to deliver the change being called for by this report and many others before it, but clearly this is far from being achieved.
“You can’t keep on doing the same thing and expect a different outcome”. Harriet Harman MP (Chair of the JCHR), File on Four
To make change happen we must see strong leadership on this issue at all levels, including cross Government leadership and accountability, and funding must be available to provide local support early, as soon as it is needed. Pooled budgets can support joined up working but there must be funds available to go into those budgets and staff with the right skills available to deliver the support.
Each month data is published on children, young people and adults with learning disabilities and/or autism in inpatient units on the NHS Digital website. This data is published as part of the Mental Health Services Data Set and the Assuring Transformation data set. The most recent data shows that reported incidents of restrictive interventions have increased by almost 1,000 compared to data the previous month. Of the 4,810 reported incidents in July 2020, 620 took place on children under 18. File on 4 reported that an individual with learning disabilities and/ or autism is being restrained every 15 minutes in inpatient settings.
Last month the abuse scandal uncovered at Yew Trees hospital re-highlighted the risks of closed culture of inpatient services, enabling abuse of individuals with learning disabilities and autism to remain hidden and un-checked. (See CBF statement here). During the pandemic, blanket restrictions on family carer visiting, and lack of CQC unannounced inspections have meant services are more closed to the outside world. The monthly published data on the increased use of restrictive interventions in inpatient services is from a very small proportion of services reporting. There seems to be little compliance in sharing this important data.
Care and support
File on 4 reported Bethany is now well supported in the community, going shopping and out for walks and drives and learning circus skills. Bethany’s story shows very clearly that it is possible for children and adults with learning disabilities and/ or autism currently in inpatient settings to live fulfilling lives with the appropriate care and support. However, Danielle and others like her continue to be stuck in inappropriate inpatient settings.
Currently we are seeing the kinds of preventative health and care services which make a difference (such as community teams, speech and language therapy, occupational therapy, respite, behaviour support, CAMHs, leisure and social activities) being withdrawn, reduced or holding ever lengthening waiting lists during the pandemic. The Government must act now to fund effective community support, otherwise we risk more, rather than less, of the inhumane treatment identified in the future.
“We’ve got to have a sense of urgency about all this”. Harriet Harman MP, File on Four
In the meantime, children and adults are being harmed by the system that is meant to be there to support them – at significant human and financial cost – and the time to act is now.
Listen to the programme here:
Did the programme distress you?
We know that the content of the programme will have been distressing for many families. If your relative has a severe learning disability and you need information and support you can contact CBF Family Support on 0300 666 0126 or firstname.lastname@example.org