Ah, yesterday the ambassador has spoiled us with a veritable pyramid of material relating to people with learning disabilities and/or autism. This includes:
A first report of findings from the Learning Disability Census 2014 – following on from the 2013 Census (but with some revised questions), this gained information from providers about people with learning disabilities in specialist learning disability inpatient services on 30th September 2014 – available here http://www.hscic.gov.uk/catalogue/PUB16760
A report summing up in great detail what the ‘Transforming Care’ programme has been doing over the two years since it started, it also contains some information from the latest quarterly data collection from commissioners about how many people with learning disabilities are in specialist inpatient services. This also has an easy-read version https://www.gov.uk/government/publications/Winterbourne-View-2-years-on
A report setting out future plans for a rebooted ‘Transforming Care’ programme, based partly on a response to the ‘Time for Change’ report published last October - I’m trying to not give a certain person the oxygen of publicity. This is available here (I couldn’t find an easy-read version): http://www.england.nhs.uk/ourwork/qual-clin-lead/ld/transform-care/
There are good summaries from David Brindle in The Guardian http://www.theguardian.com/social-care-network/2015/jan/29/winterbourne-view-two-years-on-report and Andy McNicoll in Community Care http://www.communitycare.co.uk/2015/01/29/learning-disability-care-fines-providers-stronger-right-challenge-placements-among-latest-post-winterbourne-reforms/ .
Like a pyramid of Ferrero Rocher I’ve found this welter of material hard to digest in one go, so this first post puts together some of my initial reactions based on a quick read of the Learning Disability Census. By saying this is the first post I’m not committing myself to when (or if!) there will be another one around this subject!
The Learning Disability Census 2014 gives us better information than we’ve had before. For me it highlights the unwillingness of the providers of these inpatient services to give an inch without serious pressure.
A major headline figure is that there were 3,230 people in these inpatient units in 2014, compared to 3,250 people in 2013 (although in 2013 providers didn’t report 370 people that they should have done – these people were still inpatients in 2014). This is hardly a transformative reduction in the number of places, and is still weirdly higher than the 2,600 people in inpatient units on 30 September 2014 reported in quarterly data collected from commissioners by NHS England (a reduction from the, erm, 2,601 people on 30 June). Who are the 600 people in these units who are not known to commissioners? From the Census it looks like they are being commissioned by NHS Commissioners outside England, local authorities, commissioners from outside the UK and funded privately – in any plans we need to make sure these people are not forgotten.
By my reckoning (which involves some shuffling of the 370 people compared to the report), 1,275 people were in the same inpatient service in 2013 but not 2014, 885 people were in the same inpatient service in 2014 but not 2013, and 2,345 were in the same inpatient service in both 2013 and 2014. The headline ‘length of stay’ figures in the Census report (an average length of stay of 1,034 days – i.e. three years – virtually no change from the 1,065 days in 2013) only ask about how long people have been in their current inpatient unit. In revealing new questions in the 2014 Census, it turns out that 1,380 people (43% of all people in the Census) had been directly transferred from another specialist inpatient unit. When time in previous services is taken into account, the number of people who had been living in an inpatient unit for five years or more increases from 565 people to 1,060 people (a third of everyone in an inpatient unit).
So while there is some movement into and out of inpatient services, much of it is movement within the inpatient service system. There are signs in the Census that this movement is towards the independent sector: the number of people in NHS services went down from 1,851 people in 2013 to 1,730 people in 2014, while the number of people in independent sector services went up from 1,399 people in 2013 to 1,500 people in 2014. People also tend to stay longer in independent sector vs NHS services – signs that the Transforming Care programme is not really touching the independent sector and NHS services are shuffling off their problem to the independent sector to deal with?
The 2014 Census shows that many of these services are effectively putting up two fingers at any national policy attempts to drive them towards better practices.
Why are there only 15 people subject to a Guardianship order designed to support people to live as independently as possible, when there are over 600 people (20%) in these services with an ‘informal’ legal status? When another 635 people (20%) are subject to a Ministry of Justice restriction order, how come over half of them are in general or low secure services?
Why are 43% of women and 21% of men on mixed-sex wards despite the Department of Health wanting to eliminate these wards? Particularly as providers rate 44% of men (as opposed to 16% of women) being at risk of sexual behaviour that would harm other people and rate 61% of women (as opposed to 45% of men) being at risk of injuring themselves?
Why aren’t services more local to the communities that people have come from? (an average of 60.5km away in 2013 vs 59.5km away in 2014?)
Why has the number of children aged under 18 in inpatient services (160) not changed from 2013 to 2014?
The percentage of people reported as experiencing self-harm (26% in 2013 vs 25% in 2014) and physical assault (22% in 2013 vs 23% in 2014) in the last 3 months has stayed static, with accidents (21% in 2013 vs 18% in 2014) reducing slightly. As, despite DH policy, have levels of hands-on restraint (34% of people experienced this in the last 3 months in 2013 compared to 33% of people in 2014) and seclusion (11% of people in 2013 and 2014).
Most shockingly, the already obscene percentage of people getting antipsychotic medication in the last month has increased, from 68% of people in 2013 to 73% of people in 2014 (with a big increase in people being regularly prescribed them – bigger doses maybe?) – if you’re on antipsychotics you’re also more likely to get rapid tranquilisation, restraint and seclusion.
Is this what you would expect for an average £3,426 per week? (totalling up to £575 million per year)
There are also signs of belated adaptation to changing circumstances, possibly as a defensive move to protect their position. For example, in 2014 200 people were subject to Deprivation of Liberty Safeguards, an increase of 512% (yes, this isn’t a typo) from 2013. And how else to explain the number of people ‘not dischargeable’ due to behavioural risks to self or others or mental illness increasing by a whopping 80% from 496 people in 2013 to 895 people in 2014?
Perhaps the Care and Treatment Reviews (according to ‘Transforming Care’ 1,032 have been done so far (all with people in inpatient services at April 2014 with no discharge plan or discharge date) with 566 people discharged by January 2015) are the magic bullet that happened too late to show in the Census? Perhaps the other measures in ‘Transforming Care’ will finally see significant shifts by September 2015? I hope so – all I know is that this Census suggests that the providers aren’t going to go quietly. For a sobering reminder of the fights that are still ahead, I suggest you look at this article in the Lancashire Telegraph about the apparent mooted ‘closure’ of Calderstones (many apologies to the person who sent this link to me as I haven’t been able to track back to who are you and to credit you, but thank you) http://www.lancashiretelegraph.co.uk/news/11756016.CLOSE_IT_DOWN__Expert_advises_national_NHS_chiefs_to_shut_down_Calderstones_Hospital/
If anyone ever thinks we’re post-Winterbourne, just read that and weep.