This blogpost is the final one of four looking at the Transforming Care programme through the prism of the national statistics regularly produced by NHS Digital, updating a series of blogposts I last updated in 2019..
The first blogpost looked at statistics on the number of people being admitted to inpatient services, and where they were being admitted from.
The second blogpost looked at how far people were from home and how long they were staying in inpatient services.
The third blogpost looked at planning and reviews for people within inpatient services.
This final blogpost will focus on the number of people leaving inpatient services (charmingly called ‘discharge’) and what is happening leading up to people leaving. Getting people out of inpatient units has arguably been the major focus of activities under the Transforming Care/Building The Right Support banner. Again, at this point the impact of these programmes should be visible in the number of people getting ready to leave, how well people’s plans to do so are developing, and how many people are actually leaving to places outside inpatient services.
The first and most obvious question is whether people in inpatient services have a planned date to leave (I will pick up on the complications of what ‘leaving’ actually means later in this post). The graph below shows the proportion of people in inpatient services with a planned date for transfer, from March 2015 to March 2022 (according to Assuring Transformation data). There have been some fluctuations over time but there is little sense of sustained improvement. In March 2022 there was no planned transfer date for 55% of people in inpatient units, compared to 50% of people in March 2015. In March 2022, 18% had a planned transfer date within 6 months, although for 9% of people their planned transfer was overdue.
Well, if people are leaving the inpatient unit to go home in some sense then my expectation would be that the person’s local council should be aware of the plan to leave. The graph below shows information from Assuring Transformation based just on those people with a plan to leave – for this group of people, are councils aware of the plan? Over time, the proportion of people with a plan that their council is aware of dropped substantially from 2015 to 2019, although this has improved again up to March 2022. Despite this recent improvement, by March 2022 the proportion of planned transfers where the council was aware (64%) was still lower than it was in March 2015 (69%). Of concern is that in March 2022 for 21% of people with a planned transfer it wasn’t known whether the council was aware of the plan or not, an improvement from 2019 but still worse than in March 2015 (7%). At the very least this suggests that the close working between health and social care envisaged as central to Transforming Care/Building The Right Support is less than universal.
There are other signs too of haste in planning for people to leave. The Assuring Transformation statistics report whether a range of people (the person themselves, a family member/carer, an advocate, the provider clinical team, the local community support team, and the commissioners) have agreed the plan to leave. For those people with a plan to leave, the graph below reports the proportion of their plans that have been agreed by different people, from March 2016 to March 2022. Over time, the proportion of plans agreed by anyone and everyone potentially involved has plummeted. Only 29% of plans had been agreed by the person themselves in March 2022, compared to over two thirds of people (69%) in March 2016. Similar drops are reported for the proportion of family/carers (from 60% to 25%) and advocates (from 64% to 28%) agreeing the plans.
By March 2022, transfer plans had been agreed by a minority of provider clinical teams where the person was supposed to be moving to (from 83% in March 2016 to 33% in March 2022), a minority of local community support teams in the area the person was supposed to be moving to (from 69% to 30%) and a minority of those commissioners who are reporting the information the graph is based on! (from 83% to 33%). To what extent are these actually feasible and sustainable plans that will result in a better life at home for people in inpatient services, and what are their chances of breaking down?
The final graph in this blogpost series is one of the most important – how many people have actually been transferred from inpatient services, and where have they gone? The graph below adds up monthly ‘discharges’ from inpatient services in the Assuring Transformation dataset in six yearly blocks, from October 2015 through to September 2021. It’s also one of the most complicated graphs in this series, so I’ll go through it in a bit of detail.
The first thing to say is that overall the number of people ‘discharged’ from inpatient services increased from 2015/16 (2045 people) to 2017/18 (2,265 people), but has since decreased to 1,930 people in 2020/21 (potentially partly due to the impact of the COVID-19 pandemic).
Of the people who have been ‘discharged’, in 2020/21 over a quarter of people (550 people; 28%) moved to independent living or supported housing. Another over a quarter of people (545 people; 28%) moved to their family home with support, making well over half of everyone ‘discharged’ from inpatient services (56%). This is a big increase from the 41% of people 'discharged' to these living circumstances in 2015/16.
Where did everyone else go? For almost two fifths of people in 2020/21 (360 people; 19%) their ‘discharge’ was actually a transfer to another inpatient unit, confirming the picture of ‘churn’ of people passed around inpatient services found elsewhere in this series. More than one in ten people (235 people; 12%) moved into residential care. Given that some inpatient services have re-registered themselves as residential care homes with the CQC and a panoply of 'step-down' and other services are registered as care homes, it is unclear to what extent people are leaving an inpatient service to move somewhere more local and homely, moving somewhere very similar to where they were, or not actually moving at all.
In 20/21, there were also another 220 people (11%) who moved to an ‘other’ location – again it is unclear what these ‘other’ places are, but are they wildly different from where people were moving from?.
There are also signs of some changes over time in where people are being ‘discharged’ to. Fewer 'discharges' are to other hospital inpatient units and residential care, and more 'discharges' are to people's families with support.
So in this final post in the series, there are definite signs that Transforming Care/Building The Right Support has not continued to support the 'discharge' of more people out of inpatient services, although over half of those people who are leaving are now moving to independent or supported living or back to the family home. There are real worries about the feasibility and sustainability of some of these plans, and the extent to which many people ‘leaving’ inpatient services are actually leaving for something radically different or being churned around a system that doesn’t call itself an inpatient service system but looks mighty similar to the people living within it. The fact that for almost two fifths of people being 'discharged', they are actually being moved to another inpatient unit, is to my mind something of an indictment of the inpatient service 'system' and Transforming Care's lack of fundamental impact upon it.
I started the first of the blogposts in this series with a tweet from Rightful Lives, and I want to close on one, which takes us back to what the government promised a decade ago in response to the BBC Winterbourne View programme. The kind of statistics I've gone through here are only a very small part of the picture, but they collectively show how far we are from the promises that were made. In its most recent State of Care report, the Care Quality Commission reported that over a quarter (28%) of inpatient services for people with learning disabilities or autistic people were rated inadequate or requires improvement, and as far as I can tell this percentage is increasing over time. And this at an average charge of £283,739 per place according to NHS Benchmarking this year - well over half a billion pounds a year of public money, presumably in excess of six billion pounds since the BBC Winterbourne View programme.
And none of these past four blogposts gets to the heart of what this failure has done to countless people and those close to them since the BBC Winterbourne View programme was aired (and in the years and decades before then). The continuing litany of neglect and abuse continues unabated - people like Saba Salman, Ian Birrell, Katharine Quarmby, Jayne McCubbin and Ruth Clegg, Rachel Lucas, Lucy Adams and George Julian continue to bring the brutal reality to the attention of the public, to the general indifference of those in a position to do something about it.
For all the tinkering with the machinery that has happened in the last 11 years, it's campaigning organisations like Rightful Lives, the We Are Human Too campaign led by people with learning disabilities in North East England, and the self-advocacy organisation My Life My Choice who recently withdrew from conducting Care and Treatment Reviews, who are leading the way in moral clarity and integrity.
Surely the government must see that, after 11 years, something radically different is required?
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