Out for the count

At the start of the Winterbourne View/Transforming Care programme to get (some) people with learning disabilities out of specialist inpatient services, it became very clear that information about the number of people in inpatient services, and what was happening to them, was pretty much absent. The National Audit Office (see https://www.nao.org.uk/wp-content/uploads/2015/02/Care-services-for-people-with-learning-disabilities-and-challenging-behaviour.pdf ) and the Public Accounts Committee gave NHS England a good going over about this in 2015.

Although the determined invisibility of people with learning disabilities in inpatient services had been an issue for some years, the Health and Social Care Act (2012) made a bad situation worse in terms of trying to collect comprehensive information. At the end of September 2015, according to data collected from (most) commissioners (HSCIC Assuring Transformation, see http://www.hscic.gov.uk/catalogue/PUB19833 ), people with learning disabilities and/or autism were being kept in inpatient services by 204 out of 209 local Clinical Commissioning Groups, and 10 regional NHS England specialist commissioning hubs. According to the Learning Disability Census (see HSCIC http://www.hscic.gov.uk/article/6874/Learning-Disability-Census-2015-almost-half-of-inpatients-with-learning-disabilities-common-to-each-census-since-2013 ), at the end of September 2015 people with learning disabilities and/or autism were in English inpatient services run by 58 different NHS Trusts and 31 different independent sector organisations.

NHS England and the Health and Social Care Information Centre at the moment have three sources of information about people with learning disabilities and/or autism in inpatient services.

Monthly Assuring Transformation data (see http://www.hscic.gov.uk/catalogue/PUB19833 - I last discussed information from this dataset on this blog here http://chrishatton.blogspot.co.uk/2015/11/impatient-inpatient.html ). This is information collected every month from health service commissioners in England (although not all of them send in returns every month) about how many people with learning disabilities and/or autism they are paying for in inpatient services. Although they are all English commissioners, the numbers should include people who they have sent to inpatient services out of England (Wales and Scotland, most likely) as well as people in inpatient services in England.

The Learning Disability Census (see http://www.hscic.gov.uk/article/6874/Learning-Disability-Census-2015-almost-half-of-inpatients-with-learning-disabilities-common-to-each-census-since-2013 ). This collects information from inpatient service providers in England about which people with learning disabilities and/or autism are in their inpatient services at the end of September each year. This could include people in English inpatient services who have been sent there from commissioners outside England (again, most likely to be Scotland and Wales).

Mental Health and Learning Disabilities Dataset Statistics (see http://www.hscic.gov.uk/catalogue/PUB19578 ). This information is also collected monthly, from a wide range of providers of mental health and learning disability specialist services in England, although so far there have been no reports breaking down in detail the number of people using different types of specialist learning disability service (this includes inpatient services, but also specialist community services).

The Learning Disability Census (which was done in 2013, 2014 and 2015) is not planned to be repeated in 2016. Instead, the other two sources of information (Assuring Transformation and the Mental Health and Learning Disabilities Dataset Statistics - MHLDDS) are supposed to be able to take up the slack and provide all the information needed about people with learning disabilities and/or autism in inpatient services. As things stand at the moment, I think this assumption is debatable.

From what we know, it’s possible that both the Assuring Transformation and MHLDDS datasets are going to miss significant numbers of people that, according to the Learning Disability Census, are in specialist inpatient services.

First, the Health and Social Care Information Centre has done a detailed analysis comparing people with learning disabilities and/or autism reported to be in inpatient services at the end of September 2015, according to Assuring Transformation versus the Learning Disability Census (this analysis is reported in the Learning Disability Census report). In total the Learning Disability Census reported 3,000 people in inpatient services, compared to 2,625 people reported in Assuring Transformation. In total 2,140 people were reported in both datasets to be in an inpatient service at the end of September, 855 people were inpatients according to the Learning Disability Census but not Assuring Transformation, and 480 people were inpatients according to Assuring Transformation but not the Learning Disability Census.

Some of these differences might be explainable. For example, in Assuring Transformation commissioners regularly ‘find’ more people that they report retrospectively, so the number of people in inpatient services at the end of September reported by commissioners will increase. There are also some people picked up by the Learning Disability Census in English places that are not commissioned by English commissioners (and so not included in Assuring Transformation). Conversely, Assuring Transformation should pick up people in places outside England (so not included in the Learning Disability Census) that have been commissioned by English commissioners. Taking all these together, it means that we’re still not clear how many people with learning disabilities and/or autism are in inpatient services at any one time, with the potential numbers of people being anything from around 2,600 people to 3,500 people.

Second, will the MHLDDS pick up information on everyone identified in the Learning Disability Census as being in a specialist inpatient service? To get a rough handle on this, I looked at both the Learning Disability Census and the MHLDDS for the lists of service providers from which data were collected at the end of September 2015 (these are available in the HSCIC online data tables). In total there were 26 provider organisations mentioned in the Learning Disability Census that were not in the MHLDDS list, with at least 445 people with learning disabilities and/or autism living in these places according to the Learning Disability Census.

These organisations included six NHS Trusts with a total of 60 people:

·        3 children’s trusts (Alder Hey 5 people; Sheffield Children’s 5 people; Birmingham Children’s 5 people)

·        2 community trusts (Derbyshire Community Health Services 5 people; Birmingham Community Healthcare 20 people)

·        Puzzlingly, 1 mental health trust (Norfolk & Suffolk 20 people)

They also included eight independent providers with fewer than 5 people each (Shrewsbury Court Independent Hospital; The Lane Project; Alternative Futures Group; Turning Point; Vision Mental Healthcare; Eden Supported Living; Making Space; The Retreat Hospital York).

Finally, they included 12 independent providers with 5 or more people (totalling 385 people between them):

·        Turning Point (Rotherham) 10 people

·        The Breightmet Centre for Autism 5 people

·        Baldock Manor (Nouvita Ltd) 5 people

·        Danshell Group 85 people

·        Equilibrium Healthcare 30 people

·        Curocare Ltd 30 people

·        Glen Care 5 people

·        Lighthouse Healthcare Ltd 85 people

·        St Mathews Healthcare 25 people

·        Jeesal Akman Care Corporation Ltd 40 people

·        Brookdale Healthcare Ltd 40 people

·        Cheswold Park Hospital 25 people

If the Learning Disability Census is not to be repeated, these providers need to be checked (it’s possible that there are some errors in the Learning Disability Census, particularly among providers identified with less than 5 people) and added to the list of providers in the MHLDDS dataset. Apart from this practical step, there are much bigger issues that confront anyone trying to collect meaningful information about people with learning disabilities and/or autism in inpatient services.

First, clarity is needed about whether to collect information about people in inpatient services in England (even if they’ve been sent there from a commissioner in Wales, Scotland or elsewhere) and/or information about people in inpatient services commissioned by English commissioners (even if they are sent to inpatient services in Wales, Scotland or elsewhere). My feeling is we need to know both, and co-operation with other areas of the UK is needed to get a better overall picture if Transforming Care targets for reductions are not to be gamed by commissioners and service providers.

Second, it’s going to be difficult to keep up with the proliferation of independent sector organisations providing inpatient services – the number of people with learning disabilities and/or autism in independent sector inpatient services seems to be increasing as the number of people in NHS inpatient services declines.

Third, if people with learning disabilities and/or autism do start to make increasing use of generic mental health inpatient services rather than specialist learning disabilities inpatient services, information systems will need to be able to track individuals with learning disabilities rather than people in learning disability services (and to look for people across a wider range of NHS Trusts) – a challenge to the MHLDDS and other information systems too.

Fourth, to achieve Transforming Care targets, there appear to be a number of new services being developed that to the people living in them may look a lot like an inpatient service but which are not going to be classified as such. The new-build ‘Daisy’ complex in Wiltshire (see http://www.wiltshireccg.nhs.uk/news/new-learning-disabilities-service-to-launch-in-wiltshire ), where people are to be transferred from inpatient services to a 9-bedded ‘residential home’ to be built in the grounds of a psychiatric hospital, is a prime example of this. This will not count as an inpatient unit but may well feel like one (except that people won’t be expected to ever leave).

Fifth, another crucial fuzzy boundary is between residential special schools and inpatient services. Around 160 people with learning disabilities and/or autism up to the age of 18 are reported to be in inpatient services, but it is unclear how this maps on to the number of people in residential special schools. Knowing about these schools is a really important part of any strategy that is serious about preventing young people going into inpatient services in the first place, as a recent excellent research review by Nick Gore and colleagues on residential schools makes abundantly clear http://sscr.nihr.ac.uk/PDF/ScopingReviews/SR10.pdf ).

The last point I want to make is my personal biggest reason for wanting to keep the Learning Disability Census, and it isn’t about tracking the number of people in inpatient services. My reason is that the Learning Disability Census is the only place that gives us any regular, large-scale information on what happens to people in inpatient services – restraint, seclusion, assaults, and antipsychotic medication usage. Losing this information would give us no way of scrutinising what inpatient services are doing to people (Transforming Care aims to retain around half of the current number of inpatient places), which to me is an essential part of evaluating the impact of the Transforming Care programme.