On 31st May 2018 it will be seven years since the BBC Panorama programme was broadcast. It highlighted the torture and abuses metered out to people with a learning disability and mental health needs who were in the care of professionals entrusted to look after them.
Amongst the many system failures highlighted by the Winterbourne View scandal was the fact that there were around 3,500 other individuals in hospital settings and that some of these individuals had been incarcerated for years and years. There was a cohort of new long stay individuals, deeply institutionalised, out of sight and out of mind. Somehow hospital had become home.
By December 2012 the Government had promised a significant reduction in the numbers of individuals in hospital settings. Since that promise the reality has been much more difficult to achieve despite the kitchen sink being thrown at the problem.
In March 2018 the NHS Digital data Learning Disability Services Monthly Statistics – Commissioner Census (Assuring Transformation), March 2018, Provisional Statistics showed that there were seven years on still 2,365 patients in hospital and 1,440 (61%) had a stay of over two years. It is not possible to find data on cost now using the same methodology but in 2013 we knew that the costs of hospitalised care for these individuals was around £600 million. That is a significant spend for the wrong kind of care in too many cases.
So why has the discharge of inappropriately placed people been such a difficult nut to crack? After all we have had a whole new clinical architecture of care and treatment reviews set up by NHS England. to include doctors, nurses, psychologists, people with lived experience, social workers and other. The plan was to support timely discharge and prevent unnecessary admissions https://www.england.nhs.uk/learning-disabilities/care/ctr/ctr-policy-changes/ It is only the Consultant Psychiatrist who can admit and discharge to hospital and these teams have been set up to in effect scrutinise those decisions. It in effect requires a multi-disciplinary second opinion either to admit or discharge. I cannot think of any other area of medical practice where this approach is taken.
In October 2015 we had Building the Right Support a joint LGA, ADASS and NHS England national plan to close hospitals. https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf Alongside that we have the national service model https://www.england.nhs.uk/wp-content/uploads/2015/10/service-model-291015.pdf supplementary guidance for commissioners https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-serv-model-oct15.pdf , service model specifications https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-serv-model-oct15.pdf and 48 transforming care partnerships https://www.england.nhs.uk/learning-disabilities/tcp/
In February 2016 the Care Quality Commission published guidance and then update guidance on “Registering the Right Support” on registration of services for people with a learning disability or autism. It was subsequently updated in June 2017. http://www.cqc.org.uk/sites/default/files/20170612_registering_the_right_support_final.pdf
For good measure we have had a NICE guidelines published in March 2018 called “Learning disabilities and behaviour that challenges: service design and delivery” https://www.nice.org.uk/guidance/ng93/evidence
With all the erudite guidance, support policy and planning what could go wrong? It transpires that not too much has gone right. In the end it will be because of the people and the money.
The money needed to support the move from hospital to community is tied up in the bricks and mortar of the institutions. It is also invested in the staff who populate those institutions. These are major obstacles to change. Professor Chris Hatton in his report “A Trade in People: The inpatient healthcare economy for people with learning disabilities and/or autism” http://www.lancaster.ac.uk/news/articles/2017/shock-report-tells-of-system-that-turns-people-with-learning-disabilities-into-c/ makes the case rather eloquently. He estimates that the cost of care for 2,500 people is £477 million.
The challenge of finding the staff to work in this sector remains significant. Health Education England working with the sector skills partners, Skills for Care and Skills for Health lead this work https://www.hee.nhs.uk/our-work/learning-disability There is a shortage of doctors, nurses, psychologists, social workers, speech and language therapists, occupational therapists, commissioners and care and support staff in this sector. Unfortunately, there is no plan that addresses how these shortfalls for this sector will be addressed.
Seven years on from the Winterbourne View horrors we have had a myriad of advice, guidance and scrutiny all to little avail. In the end it needs a forceful approach to close the institutions, relocate the staff and plan the future with effective recruitment and training. It is not easy but will deliver more of what is required for individuals and families now and in the future.