Anarchy in the UK

It was the announcements of proposals for big new inpatient units in Wales, run by private companies, that got me thinking (thinking too late, as usual). While I usually parochially focus on Transforming Care in England, people and their families know to their cost that the ‘market’ in inpatient services is UK-wide, with boundaries between England, Wales, Scotland and Northern Ireland meaning very little to those deciding where people are to be ‘placed’ (I can only think that things like vases of flowers are ‘placed’, not people, things that cannot of course move of their own accord).

[from GIPHY]

Why am I belatedly thinking this is important? A number of things. Devolution has accelerated differences between the four parts of the UK, which presents opportunities for big private companies looking for the best options for the biggest profits. The CQC in England getting a bit tougher on registering (or re-registering) inpatient units? Locate your inpatient units somewhere beyond their reach – Wales, Scotland and Northern Ireland all have their own systems for regulation. Where are potential convertible properties at low prices, or places for new-build that will have the local council falling over themselves to give planning permission? In which part of the UK will ‘step down’ or ‘forensic rehab’ units, or hospitals reregistered as care homes, be just below the notice of pesky national policies to make them lucrative long-term business opportunities?

And for a nerd like myself, these differences make it easier to hide just where people are and where they have come from – again, fertile ground for organisations running inpatient services to operate within (although this is primarily about private sector companies running inpatient services, NHS or equivalent public sector organisations such as NHS Trusts can and do adopt some similar strategies to ‘fill their beds’).

All four parts of the UK have, in the recent past, conducted regular census surveys of people with learning disabilities (and sometimes and/or autism) in inpatient services, or of people in learning disability inpatient services (not quite the same thing). All four parts of the UK do this differently, and as far as I can tell this means that we cannot draw up definitive information about how many people with learning disabilities or autistic people are in ‘specialist’ units in the UK, and where they have come from in terms of their homes and families. I’ll go through each of them in turn.

In England, NHS Digital conducted a Learning Disability Inpatient Census on 30^th September for three years: 2013, 2014 and 2015. It has not been continued. This reported on the number of people in learning disability/autism specialist inpatient services which were located in England. For 2015, this census reported that there were 3,000 people in these units, a rate of 5.5 people per 100,000 total population in England. Of these 3,000 people, 2,940 people were from ‘home’ districts in England and 60 people were in English units but their homes were in other parts of the UK. What this census cannot tell us is how many people with learning disabilities or autistic people have their homes in England but have been ‘placed’ in inpatient units outside England, such as Wales or Scotland. The NHS Digital dataset based on returns from English health service commissioners (Assuring Transformation) I think should have this information, but it is not currently publicly reported.

  

Wales conducts an annual census on 31^st March on the number of people with learning disabilities in NHS mental health and learning disability inpatient services located in Wales. In 2016, there were 117 people with learning disabilities in NHS units in Wales, a rate of 3.8 people per 100,000 total population in Wales. This rate is much lower than in England. I cannot work out if these numbers include people ‘placed’ in NHS inpatient services in Wales from outside of Wales. However, these statistics exclude Welsh people with learning disabilities who are either in private sector inpatient services (whether in Wales or elsewhere) or Welsh people who are in NHS inpatient services in England. A 2015 inspection report of services for people with learning disabilities in Wales reported that an additional 53 Welsh people with learning disabilities were in these categories. This would make the overall rate of Welsh people with learning disabilities in inpatient service 5.9 people per 100,000 total population in Wales.

Northern Ireland conducts an annual Mental Illness and Learning Disability census on 17^th February, including people with learning disabilities in inpatient services run by Health and Social Care Boards (health and social are integrated in Northern Ireland). It also includes people normally resident in the inpatient unit but on home leave on the date of the census. In 2016, there were 125 people with learning disabilities in Health & Social Care inpatient services in Northern Ireland, a rate of 6.8 people per 100,000 total population in Northern Ireland. This is a higher rate than other parts of the UK, but unlike other parts of the UK the number of people in inpatient services in Northern Ireland has been dropping rapidly (it was 315 people in 2011), perhaps representing the tail-end of ‘regular’ institutional closure? However, the Northern Ireland figures do not include anyone with learning disabilities in independent sector inpatient services (either in Northern Ireland or elsewhere in the UK) or anyone from Northern Ireland in NHS inpatient services in England, Scotland or Wales.

Scotland has been conducting a Mental Health and Learning Disability Inpatient Bed Census every two years on 29^th October, with the most recent one in 2016. This includes people with learning disabilities in NHS services in Scotland, and people in inpatient services outwith (love that word) Scottish NHS services, including people in independent sector inpatient services in and outside Scotland and people in NHS inpatient services outside Scotland. In 2016 there were 291 people with learning disabilities and/or autistic people in NHS Scotland inpatient services, plus another 33 people in inpatient services outwith NHS Scotland, a rate of 6.1 people per 100,000 total population. This rate looks higher than some other parts of the UK, but the statistics include people in a wider range of inpatient services than statistics for other parts of the UK.

The upshot off all this nerdery is that I don’t think we can work out how many people with learning disabilities or autistic people are in specialist and mental health inpatient services across the UK. The roughly 3,500 people mentioned in these inpatient censuses across the UK are likely to be a substantial underestimate, particularly as the statistics often miss out people sent to independent sector inpatient services in another part of the UK. The statistics may not include all autistic people in these types of units. They may not also include the plethora of ‘step down’, ‘forensic rehab’, reregistered from hospital to care home, types of places that again may be growing largely invisibly. They certainly don’t include people with learning disabilities and autistic people in general mental health inpatient services – English data from NHS Digital suggest that this involves at least an extra 1,000 people at any one time. The statistics also don’t include children and young people in varieties of residential special school/specialist residential colleges designed for the challenging of behaviour.

Across the UK, if we include all these types of places that people with learning disabilities and autistic people may be in, we’re talking maybe 6,000 people of all ages at any one time? And over the course of a calendar year, how many people will have been in one of these places for at least some time during the year? That’s a lot of market expansion opportunity. It may be relevant to note at this point that in England 95% of the 30,500 residential care places for adults with learning disabilities are run by the independent sector, a sector that has been in decline but possibly may not be any longer.

One last thought – as John Lish pointed out on twitter, all these expansions by private companies are based on the assumption that commissioners are going to continue to buy their services (this blogpost I wrote over three years ago depressingly shows how little my thinking has changed on the limitations of commissioners when it comes to inpatient services). In England, Transforming Care hasn’t affected this assumption in any way – if anything, it may have wittingly or unwittingly accelerated it. Looking at other parts of the UK, it looks like not having a commissioner/provider split, having more state-run service provision, or having integrated health and social care services, doesn’t necessarily make a decisive difference either.

Whether public money is tight or not, this is a shocking waste of public money resulting in a shocking waste of people’s lives. Take any local area in England. Put people and families in charge of how that public money is spent – really in charge. Watch the light being shone on these dodgy practices and watch them track down exactly how much money is being spent, where, on what. Watch people and families relentlessly root out waste and shoddy practice. Watch the encouragement of small, local committed groups who actively want to invest in the potential of people with learning disabilities or autistic people to live the fulfilling life they want to. Watch people blossom when they can begin to imagine a future for themselves, and have the means and support to enact that future. [note: good lawyers will be needed]. Do I want my tax payers’ money (the usual phrase here would be hard-earned, but that might be a bit of a stretch in my case) chucked down the throat of an offshore venture capital company to keep people in chains, or invested in people with love and commitment?

Ha – stacked the deck there! Have a good weekend.

Some of the data and analysis here is based on this paper written for the Tizard Learning Disability Review, but I’ve updated some data where possible and focused on some different issues than in the paper.