On 5th July 2018 there will be/was a parliamentary Westminster Hall debate proposed by Norman Lamb MP (in the coalition government of 2010-2015, a Lib Dem health minister who continues to be actively engaged with what’s happening to/with people with learning disabilities).
Here is where you can get information on the debate itself, including watching it, although in characteristic and revealing fashion it is mis-titled as ‘Future of the Transforming Social Care programme’. The Commons Library has also produced a short document with links to many relevant reports.
"That this House expresses concern at the slow progress made under the Transforming Care programme, which was set up to improve the quality of care and quality of life for children and adults with a learning disability and/or autism who display behaviours that challenge;
· notes that evidence continues to emerge of the neglect, abuse, poor care, and premature deaths of people with learning disabilities;
· recognises that a substantial number of people with learning disabilities remain trapped in, and continue to be inappropriately admitted to, Assessment and Treatment Units (ATUs) rather than living independently with support close to their families and friends;
· is concerned at the lack of capacity and capability of community services, as highlighted by the National Audit Office; believes that the Transforming Care programme is unlikely to realise the ambitions set out in the ‘Building the Right Support’ strategy before it ends in March 2019;
· calls on the Government to commit to a successor programme to Transforming Care in order to realise the ambition of a shift away from institutional care by investing in community services across education, health and social care;
· believes that such services must adopt a lifelong, early intervention and prevention approach, protect the human rights of children and adults with learning disabilities and/or autism, and promote their independence and wellbeing through delivery of the right support, in the right place, at the right time;
· and further calls on the Government to ensure that such a programme is prioritised and properly resourced."
This blogpost is going to summarise where I think we’re at with Transforming Care, with a bit of focus on the evidence we as the public do and don’t have. I’m going to try cover quite a lot of ground – there are many over-detailed posts on specific aspects of this on my blog.
Brief background: a BBC Panorama undercover investigation of a specialist inpatient unit for people with learning disabilities and/or autistic people, Winterbourne View, in 2011 revealed to the public horrific abuse from staff, eventually resulting in several prosecutions. This also helped kickstart a process of bringing into the light that an unknown number of people (in the thousands) were in these kinds of places (both NHS and private sector), sometimes for decades and a long way from home, and regularly experiencing seclusion, restraint, assault and antipsychotic medication rather than effective support to help people move on.
In 2012 the government responded with ‘Transforming Care’, which went through a number of guises before being rebooted in 2015 as the NHS England-led Transforming Care policy/programme, summarised in 'Building The Right Support'. This is designed to reduce the number of people with learning disabilities and autistic people in specialist inpatient services, and to increase and improve the support people get such that the option of putting people into inpatient services does not arise, and is due to wrap up as a programme at the end of March 2019.
So – what do we know about how Transforming Care is going, and what don’t we know? In some ways (thanks to the continuing efforts of NHS Digital) the information we (the public) have about people with learning disabilities and/or autistic people in inpatient units is getting better, in other ways it is getting worse.
What do we know about people in inpatient units – the headline numbers
How the Transforming Care programme has mostly been judged (and what it’s put most of its money and people into) is reducing the number of inpatient units for people with learning disabilities and/or autistic people.
In their ‘Building The Right Support’ statement of intent in October 2015, NHS England and others said that by March 2019 there would be (from a baseline they described as 2,600 people in these units on any one day) a reduction of 35% - 50% in the number of inpatient places from October 2015 to March 2019, which translates to inpatient places for 1,300 – 1,700 people with learning disabilities and/or autistic people.
Based on information that NHS England and NHS Digital have been publishing for a while on people on what commissioners think are specialist inpatient units for people with learning disabilities and/or autistic people (called the ‘Assuring Transformation’ dataset), we know that:
- In May 2018, there were 2,400 people recorded as being in these units. This will be an under-estimate because commissioners don’t always report information on time but can add it later, and this typically results in at least 100 extra people eventually being ‘found’ for any given month. So my estimate would be in May 2018 there were around 2,500 people in these units. This compares to 2,615 people in March 2016, an overall reduction of 4.4% in over 2 years. To reach the original targets, reductions in the number of people in these units will have to be between 32% and 48%, in 10 months.
- The average length of time that people have lived in their current inpatient unit has dropped, from 1,082 days (just under 3 years) in 965 days (around 2 years 8 months) in May 2018. But many people are regularly transferred straight from one unit to another – people’s overall length of continuous stay in inpatient units has not changed, from 1,954 days (5 years 4 months) in March 2016 to 1,960 days (still 5 years 4 months) in May 2018.
- How far people are from their home when they’re in these units wasn’t reported in March 2016. Where this was known by commissioners in May 2018 (and it wasn’t for 295 people), 22% of people were between 50km and 100km from home and a quarter (25%) of people were more than 100km from home.
On these three straightforward measures, the Transforming Care programme has not achieved what it was supposed to. The number of people in inpatient units has not changed much at all over time, people are still spending on average more than 5 years in inpatient units, and inpatient services are far from local (at least 50km far) for almost half of people in them. On other measures too, like the legal status of people in inpatient units, the types of unit people are in, and the security level of inpatient units, there has been hardly any change over the course of the Transforming Care programme.
There are also some worrying trends in the ‘Assuring Transformation’ dataset, for example:
- The number of children and young people aged under 18 in these units is sharply increasing, from 170 young people in March 2016 to at least 250 young people in May 2018, an increase of 47% in just over two years.
- The proportion of people in these units labelled as autistic (with or without accompanying learning disabilities) has increased from 38% of people in these units in March 2016 to 48% of people in May 2018.
- Of the 2,010 people ‘admitted’ to inpatient units in the year June 2017 to May 2018, 18% (360 people) were people who were re-admitted to an inpatient unit within a year of their last stay, and over a quarter (26%; 515 people) were actually transfers straight from a different inpatient unit. These proportions of people being re-admitted or transferred are stable or if anything slightly increasing from the early days of Transforming Care in early 2016.
- The private sector is currently operating around half of all these inpatient places,with a slow drift upwards in this proportion over time. Where direct comparisons have been done, private sector inpatient units have been of poorer quality, and some organisations run inpatient serves that receive consistently poor CQC ratings.
Also worrying is the information coming from a different dataset run by NHS Digital, the Mental Health Services Dataset (MHSDS), which reports the number of people that service providers (rather than commissioners) report as people with learning disabilities and/or autistic people in mainly generic mental health inpatient services:
- At the end of March 2018, 3,540 people with learning disabilities and/or autistic people were in some form of mental health inpatient service.
- There is some overlap with the Assuring Transformation data (1,535 of the 3,540 people were in a ‘learning disability ward’) but there are perhaps altogether getting on for 4,000 people with learning disabilities or autistic people in some form of specialist inpatient service on any given day, with people in generic mental health inpatient services generally staying for much shorter periods of time.
Some things that we don’t know (any more) about people in inpatient units
NHS England have been repeatedly criticised by parliamentary select committees and the National Audit Office for not having and sharing enough decent information about how well Transforming Care is doing, and what impact (if any) it is having on people and families. And the hard work that has gone into developing and maintaining both the Assuring Transformation and MHSDS datasets shows just how difficult this can be. But there are important sources of information that NHS England have discontinued, not made public, or shelved, that are essential for understanding what is happening with Transforming Care. Here are some that I know of – there may well be others:
- The Learning Disability Census was a complete annual census of inpatient services for people with learning disabilities and/or autistic people that ran for three years from 2013 to 2015 but has since been discontinued. Among other things, this census provided invaluable information such as people’s experiences of seclusion, restraint, assault, self-harm and antipsychotic medication usage, and also in the fees charged by these units (running at over half a billion pounds every year in 2015) that have not been collected and/or made publicly available since. This is crucial information for proper scrutiny of these units and what they are costing the public purse.
- Well over a year ago, NHS England commissioned the University of Birmingham and partners to conduct a ‘national evaluation of the Building The Right Support’ programme, using an ‘action research’ methodology to ‘inform the national and local implementation of the programme’. To date, no products of this ‘action research’ project have been published, although I believe at least one substantial report does exist. Why?
- In 2017, the National Institute for Health Research (NIHR) put out a call to fund a research project also evaluating the ‘Transforming Care’ programme. As the call states: “None of the projects above are exploring in depth the quality of life outcomes and the quality of care of people in the community settings in which they live . Therefore, there is a need (and a demand from people with disabilities and carers and advocates) for independent research to focus on measuring changes in quality of life and support over time and so assess the impact of the programme on the lived experience of people.” The commissioned project was supposed to start in January 2018. My understanding is that despite at least two grant proposals being shortlisted, it seems that NHS England have decided not to fund this grant proposal at all, despite there being no other way to track the impact of Transforming Care over time on the actual lives of people on the receiving end.
- The NIHR research call also mentioned two other reports that were ‘about to be published’: “A systematic review of the literature and a report from the analysis of the live clinical audit platform data prepared by Dr Peter Langdon and colleagues is about to be published. Findings from a Quality and Outcomes Research Unit study on the views and experiences of commissioners, including views on the Transforming Care programme, is about to be published.” Where are they?
We also know very little of more murky consequences of the Transforming Care programme, such as the extent to which providers of inpatient unit services can ‘disappear’ people from the statistics by inventing ‘new’ types of service that aren't officially inpatient unit but may feel like them to the people living in them, and by re-registering inpatient units as residential care homes (again, do they feel any different apart from being cheaper to run?). We also don’t know how many people use inpatient services over the course of a year, which may be more meaningful than snapshots at any given point in time.
This absence or withholding of relevant information severely hampers public scrutiny and understanding of the Transforming Care and how it might operate more effectively.
The wider picture
So far I’ve focused on information about what Transforming Care is trying to move away from (the number of people in inpatient units). What about what they’re trying to move towards, and how well that is going? Although there is less specification about this in 'Building The Right Support', some main elements include better community-based support for people who need it (including support in childhood), better housing options for people, and better support for people in distress, resulting in inpatient services no longer being seen as a necessary option for nearly as many people.
Information about the extent to which the kinds of community-based services and support advocated in Transforming Care, and their impact on people’s lives, is seriously lacking, but available straws in the wind are, on the whole, not encouraging. For example:
- Community teams for children with learning disabilities and/or autistic people. There is no national information on these teams on what they do. An NHS Benchmarking project working with 49 organisations has reported some information on community services for children with learning disabilities . Here the trends look pretty catastrophic. In 2015/16 there were 2,289 contacts with children with learning disabilities made by community health services per 100,000 general child population – a figure already lower than the equivalent for adult teams. By 2017 this had dropped to 1,471 contacts with children per 100,000 population, a drop of over a third. Over the same year, the average waiting time for a routine appointment for children with learning disabilities increased from 32 days to 72 days.
- Coupled with the increasing number of children and young with learning disabilities and/or autistic children in inpatient units (with more in residential special schools), a general drift towards special schools, and the high numbers of children and young people with learning disabilities and/or autistic children being prescribed psychoactive medication, early support for children and families looks like it’s going in the wrong direction.
- Community teams for adults with learning disabilities and/or autistic people – again, there is no national information here. The same NHS Benchmarking project reports that the number of contacts with adults with learning disabilities made by community health services has increased, from 2,688 contacts per 100,000 adult general population in 2015/16 to 2,756 contacts per 100,000 population in 2017. But there are signs that community health services are ‘doing more with less’, and are creaking under the strain. For example, the waiting time from referral to assessment has increased for ‘routine’ referrals from 34 days in 2015/16 to 41 days in 2017. The skills of these community teams are also changing – 61% of staff in these services were registered nurses in 2015/16, compared to 53% of staff in 2017. The number of learning disability nurses working in the NHS has also been plummeting for some years now.
- In terms of where people are living, there is national information (NHS Digital) for adults with learning disabilities aged 18-64 who are getting long-term social care support (so not including autistic people without learning disabilities, people aged under 18 or over 65, people with support being paid for by health services, or the much larger number of people not getting long-term social care support). This information shows that the number of people living in residential care is dropping, the number of people with tenancies or living in supported living places is increasing, but the number of adults still living with their families is also increasing.
In terms of information on the wider picture, Building The Right Support made a number of promises, including:
- · “We will explore with transforming care partnerships an appropriate way to monitor improvements in quality of life, but are minded to support areas to rollout use of the Health Equality Framework tool to monitor quality of life. In particular, we are considering how to support the use of this tool to understand changes to quality of life as people are supported to move out of inpatient services.”
- · “We will also revise the Learning Disability Self-Assessment Framework (SAF) and the Autism Self-Assessment Framework so that they reflect how well local areas are doing”.
Ignorance is Strength
In this post, I’ve tried to set out a quick summary of what we as the public know about the progress of Transforming Care so far, and also what we don’t know. Within the narrow range of things we have information about, progress seems to be slow, and the wider picture is not encouraging. And the information made available to us, the public, is a tiny fraction of what is needed for proper scrutiny. Surely this information would be useful to everyone willing Transforming Care to succeed?