We need to see urgent system change and a government inquiry: BASW England responds to CQC Report ‘Out of Sight - Who Cares?’
The report reinforces many messages from people with lived experience and their loved ones - the system is broken, early intervention and support services in the community are variable or non- existent, and that people are not getting the right support at the right time.
There is ongoing evidence of excessive use of prolonged and long-term seclusion, segregation, restraint and human rights violations and abuse. The report highlights too many examples of undignified and inhumane care in hospital and care settings.
From the perspective of people and families who have been campaigning tirelessly for years to have the human rights of their loved ones recognised and upheld – often at great personal sacrifice – this report highlights the scale of inadequate and abusive institutional cultures and practices that people and families are subjected to.
The lived experiences that have been shared as part of the report paint a devastating picture of our health and social care system. The impact of a fragmented system with complex funding arrangements and workforce shortages, with a lack of training and support for staff, were highlighted in the abuse inflicted on autistic people and those with learning disabilities at Whorlton Hall. It is well documented that the sector is plagued by high vacancy rates and a lack of properly trained staff – which is symptomatic of the value placed upon caring roles in our society.
The report highlights issues with incomplete data about the use of restrictive interventions with omissions submissions from providers. This is completely unacceptable and is in itself an abuse of power, feeding into “closed cultures”, allowing people to be ignored and lost in the system.
This latest report shows from the perspective of people and families the level of harm and damage caused by getting things wrong. There are far too many examples where patterns of abusive, institutional behaviour exist behind closed doors.
Now is the time for change
The focus on missed opportunities for autistic people is also stark. Research that BASW has undertaken as part of the Homes not Hospitals workstream mirrors the findings in this report - that a diagnostic service alone is not enough.
What is needed is a service for autistic people that involves the person and their family from the start, providing access to multi-disciplinary assessment and person-centred support in their community close to where they live, with agreements for cross-organisational working and pathways to prevent hospital admissions.
It cannot be emphasised enough that now is the time for change. People and families continue to spell out what is needed is the right people, the right support at the right time.
This includes named social workers for autistic adults and adults with a learning disability, including those living in health settings, person centred and place based commissioning, joined up and pooled integrated resources and accountability, oversight, scrutiny by and for people with lived experience and their families.
What next?
BASW strongly supports the CQC's call for national system change, including all 17 recommendations made and the further work outside of this review identified. BASW reinforces the need for a statutory role of a Lead commissioner for autism and learning disabilities as a regulated post, with the authority to enable system change and to be directly accountable to a governance body of people with lived experience and parents/carers.
BASW also calls for a government inquiry as to why previous recommendations from government reports have not been implemented. There is a need for transparency and accountability.
The capabilities statements for social work with autistic adults and adults with learning disabilities, alongside the toolkit resources and the organisation self-assessment, have been co-produced with people and families. They promote best practice and have been developed to support social workers to better understand and be able to carry out their role confidently and effectively when working with people with learning disabilities and or autistic adults to prevent the experiences shared by people and families in this report from happening again, or to anyone else.
The BASW England ‘Homes not Hospitals’ workstream supports the #Right2Home campaign and is developing resources to promote best practice with citizens and communities to challenge restrictive care and treatment.