No room for complacency
This week has seen a focus on the care of people who have a learning disability in institutions in England.
On Monday, England’s Children’s Commissioner published her findings that too many children are being admitted to secure hospitals unnecessarily, with the number affected more than doubling over four years and some children spending months or even years of their childhood in institutions.
On Tuesday, England’s Care Quality Commission called for an independent review of every case of a person who is being held in segregation in hospitals or assessment and treatment units.
And on Wednesday, the BBC broadcast a deeply shocking and upsetting Panorama investigation into the abuse of people who have a learning disability or autism at a hospital in County Durham.
Although these reports all related to incidents south of the border, it would be wrong for those of us in Scotland to imagine we have our own house in order on these issues.
Last November, the Scottish Government published a report called Coming Home by Dr Anne MacDonald, which revealed that more than 700 people from Scotland are being cared for away from their own area – and for almost half of them, this has been the case for more than 10 years.
453 of these people did not choose to be cared from away from their own area, and 109 of them have been identified as needing to move home as a priority.
79 people have had to move out of Scotland altogether – meaning some of them may also be among those cases identified by the new English studies, although we can’t say that for sure.
ENABLE Scotland was founded in 1954 by families who wanted their children to have the same rights as everyone else.
Many of those families were driven by a determination that their children would not spend their lives in institutional settings.
For 65 years, ENABLE Scotland has fought for the right of people who have a learning disability to live in their own home within their own community supported by the people they choose.
Despite the undoubted progress we have made in Scotland – especially since the decision to close institutions nearly 20 years ago – there is no room for complacency.
Making the provision of excellent personalised care and support central to the delivery of social care services must be the very highest priority to ensure some of the awful stories we have heard this week cannot be repeated.
And making social care an attractive, rewarding career choice is vital to building and maintaining the skilled and passionate workforce to deliver outstanding self-directed support which allows every person who has a learning disability to live the life they choose.
The Coming Home report makes several key recommendations around strengthening social care services in the community, supporting family carers, improving commissioning and planning of services and housing, and developing the social care workforce, including better quality training in techniques like Positive Behaviour Support (PBS) which de-escalates situations for individuals before they become distressed – quite the opposite of what the Panorama documentary bore witness to.
In line with our mission and values to support all people who have a learning disability to live in the community of their choice and be respected as equal members of society, over the last two years, ENABLE Scotland has been investing in the development of an integrated frontline health and social care workforce through its partnership with Glasgow Caledonian University.
The charity now employs a number of specialist Learning Disability Nurses at senior management level who lead on the design of support and workforce planning for individuals for whom clinical input is required, as well as lead practitioners within services teams.
As we saw at the end of the Panorama documentary, and as I see every day at ENABLE Scotland, every person who has a learning disability can live a good life, with the right support. The complexity comes in relation to the agencies who have to work together to design and deliver this support, not in the individual themselves.
The policy direction is clear as set out in the integration agenda, and the steer from the Scottish Government is that the balance of public spend will be shifted out of acute NHS settings and into community based care over the next five years.
But the evidence that we are not yet getting this right for every person who has a learning disability is also undeniable.
What we need now is action. Almost 6 months has passed since the publication of the Coming Home report.
And this must not and cannot result in the development of more multi-bed, residential units – no matter how nice and new the building is, how well trained the staff are, how good the facilities are, or how pretty the rooms are – institutionalising people can never be the answer.
We are calling on all parties – the Scottish Government, local authority commissioners and Integrated Joint Boards, and importantly, providers themselves, to act now and deliver a plan to support all 700 people identified in the November 2018 report to come home – but most importantly, to get the right support to live a good life.
ENABLE Scotland is here for anyone who needs our support. You can call our ENABLE Direct helpline during office hours on 0300 0200 101, or email firstname.lastname@example.org.