Tuesday, 28 November 2017

Transforming Care: Leaving

This blogpost is the final one of five looking at the Transforming Care programme through the prism of the national statistics regularly produced by the ever excellent @NHSDigital.

The first blogpost looked at the overall number of people with learning disabilities and autistic people identified by the statistics as being in inpatient services.

The second blogpost looked at statistics on the number of people being admitted to inpatient services, and where they were being admitted from.

The third blogpost looked at when people were in inpatient units, how far were they from home and how long were they staying in inpatient services.

The fourth 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’ or 'transfer') and what is happening leading up to people leaving. Again, even if the numbers of people leaving are not yet rapidly changing as a result of Transforming Care, the impact of the Transforming Care programme should be visible in the number of people getting ready to leave and how well people’s plans to do so are developing.

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 September 2016 (according to Assuring Transformation data). There was a worrying drop in the proportion of people with a transfer date in 2016, but by September 2017 over half of people (55%) had a planned transfer date.




A date might be ‘planned’, but how distant in time is the planned transfer? The 5 columns on the left of the graph below show this information according to Assuring Transformation data, from March 2015 through to September 2017. Consistent with the earlier graph, the proportion of people without any planned date to leave at all increased hugely in 2016, with the position recovering throughout 2017. By September 2017, 11% of people had a planned transfer date within the next 3 months, 16% had a planned transfer date between 3 and 6 months ahead, and 9% of people had a planned transfer date between 6 months and a year ahead. For 13% of people their planned date to leave was between 1 and 5 years ahead, and for 7% of people their planned date to leave was overdue.

The right hand column of the graph shows equivalent information for August 2017 from the MHSDS dataset (see the first post in this series for details of the two datasets), which focuses more on people with learning disabilities and autistic people in more short-term mainstream mental health services. Possibly because of the mainly short-term crisis nature of people’s time in these services (in other words, people come in for a short period of time and leave again, with planned 'transfers' not part of the picture), the vast majority of people (87%) had no planned date for transfer. The second post in this series showed that a large proportion of ‘admissions’ to inpatient services were people transferred from acute hospital services and readmissions (where people had previously been in an inpatient service less than a year before) – what’s happening to people in these mainstream mental health inpatient services needs to be better understood. 



So far, the statistics look like there is a push from Transforming Care that is having an impact on the number of people with plans to leave. Do we know anything about the plans themselves? 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 where their council is aware of the plan is dropping – from over two thirds (69%) in March 2015 to just over a half (53%) in September 2017. Just as worrying is that in September 2017, for a third of people (33%) it wasn’t known whether the council was aware of the plan or not, a huge increase from March 2015 (7%). At the very least this suggests that the close working between health and social care envisaged as central to Transforming Care is not universally happening. 



There are other signs too of potential haste in making plans 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 September 2017. Over time, smaller proportions of plans have been agreed by anyone and everyone potentially involved. By September 2017, less than half of plans had been agreed by the person themselves (48%), a family member (44%) or an advocate (48%). Only just over half of plans had been agreed by the provider organisation (55%), the local community support team (51%) or the commissioners (55%). Even though not everyone will be in contact with family members to agree these plans, for example, to what extent are these actually feasible and sustainable plans that will result in a better life at home for people in inpatient services?


The final graph in this short 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 for two periods of time; a year from October 2015 to September 2016, and a year from October 2016 to September 2017. 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 ‘transferred’ from inpatient services has increased, from 2,050 people in 2015/16 to 2,235 people in 2016/17.

Of the people who have been ‘discharged’, in 2016/17 almost a quarter of people (525 people; 24%) moved to independent living or supported housing. Another fifth of people (450 people; 20%) moved to their family home with support, making nearly half of everyone ‘transferred’ from inpatient services.

Where did everyone else go? For over a sixth of people in 2016/17 (375 people; 17%) 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. Even more people (410 people; 18%) moved into residential care. Given that some inpatient services have re-registered themselves as residential care homes with the CQC, 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 but staying in a place that has re-registered.

In 2016/17, there were also another 195 people (9%) 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? Finally, 120 people (5%) are in the puzzling category of ‘no transfer currently planned’ while having apparently already been transferred.




So in this final post in the series, there are definite signs that Transforming Care is exerting pressure for more people to have plans to leave their current inpatient services, and almost half of those people who are leaving are moving to independent or supported living or back to the family home. There are also some 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.

One final point - I started this short series of blogs with a warning from @MarkNeary1 that all these graphs and numbers are people - and then I spent five blogposts talking only about numbers. I hope that numbers (which is what I spend a lot of my working life trying to understand) can give part of the picture and are useful in encouraging change, but I do worry if I'm 'assuring' myself that this the case. I want to leave the final word to a tweet from @nbartzis which sums up the whole issue perfectly.





Monday, 27 November 2017

Transforming Care: Planning

This blogpost is the fourth of five looking at the Transforming Care programme through the prism of the national statistics regularly produced by the ever excellent @NHSDigital.

The first blogpost looked at the overall number of people with learning disabilities and autistic people identified by the statistics as being in inpatient services.

The second blogpost looked at statistics on the number of people being admitted to inpatient services, and where they were being admitted from.

The third blogpost looked at when people were in inpatient units, how far were they from home and how long were they staying in inpatient services.

This blogpost will focus on what the statistics are telling us about planning within inpatient services, just using statistics from Assuring Transformation. Even if Transforming Care is not yet showing big reductions in the number of people in inpatient services, its effects should be felt through the inpatient care plans people have, whether people’s needs are being regularly reviewed, and whether people are having regular, effective Care and Treatment Reviews (CTRs).

The first graph below shows the details of care plans for people according to inpatient services, from March 2015 through to September 2017. By September 2017, almost a third of people (30%) were labelled ‘currently not dischargeable because of level of behaviour that presents a risk to the person or others, or mental illness’, up nearly 10% from 21% in March 2015. The proportion of people with an active treatment plan but no plan to leave has stayed pretty static over time (39% of people). The proportion of people actively working towards a plan to leave with a plan in place has dropped over time, from over a third (35%) in March 2015 to just over a quarter (26%) in September 2017. Delayed transfers of care are reported for relatively few people (4%) throughout. From these figures, it is impossible to tell whether these changes are due to changes in what inpatient services are doing, or changes in who is in inpatient services. 
  

For everyone in inpatient services, reviews should happen regularly. The graph below shows how long ago people in inpatient services had had their last review, from March 2015 to September 2017. The graph generally shows that things seemed to get worse in 2016 but are improving again in 2017. By September 2017, over a quarter of people (27%) had had a review in the past 12 weeks, and almost a further quarter (22%) between 12 weeks and 6 months ago. However, almost another quarter (23%) last had a review between 6 months and a year ago, and the final quarter 23% had last had a review over a year ago.
  

A particular form of review introduced by Transforming Care as a way to bring independent voices in to challenge inpatient services is the Care and Treatment Review (CTR). The graph below reports the last time people in inpatient services had had a CTR, from October 2016 to September 2017. The graph shows that the vast majority of people in inpatient services have had a CTR at some point (85% of people in September 2017), and that this coverage has increased from 70% of people in October 2016. Perhaps one concern is that 14% of people last had a CTR more than a year ago, a proportion that has stayed consistent over time.

What do CTRs recommend? Over the year from October 2016 to September 2017, there were 2,050 CTRs for people in inpatient services. In well over half of these (1,195 people; 58%) the conclusion was that the person was not ready to leave and needed to be in an inpatient service. For almost a third of people (655 people; 32%) the conclusion was that the person was ready to have a plan to leave – for 240 of these 655 people there was no plan in place. For a puzzling 160 people (8% of CTRs), an outcome was ‘not applicable’.


 The final graph below shows when people are next scheduled to have a CTR. Again, there are improvements from October 2016 to September 2017, where the proportion of people with no scheduled future CTR dropped from over half (55%) to just over a third (36%). This is still quite a high proportion of people with no scheduled future CTR, however, and for a further 13% of people the date for their scheduled CTR had passed without a CTR happening. 



Overall there are signs that more people in inpatient services are having both regular reviews and Care and Treatment Reviews. There are still large numbers of people in inpatient services who have not had any sort of review for a long time, however, and the proportion of people who inpatient services are saying are ‘currently not dischargeable’ is increasing.

Update: This post has been updated to more accurately reflect the definition of 'currently not dischargeable' used in the statistics.

Saturday, 25 November 2017

Transforming Care: How far from home, for how long?

This blogpost is the third of five looking at the Transforming Care programme through the prism of the national statistics regularly produced by the ever excellent @NHSDigital.

The first blogpost looked at the overall number of people with learning disabilities and autistic people identified by the statistics as being in inpatient services. Among other things, this post looked at the different views provided by commissioners (via the Assuring Transformation statistics), who tend to focus more on people in specialist learning disability inpatient services, and mental health service providers (via the MHSDS), who tend to focus more on people with learning disabilities and autistic people in mainstream mental health inpatient services often for short periods of time and for many people apparently for the purposes of ‘respite’. This is important to remember when looking at the graphs to follow.

The second blogpost looked at statistics on the number of people being admitted to inpatient services, and where they were being admitted from.

This third post will focus on two aspects of what happens to people in inpatient services, how far people are from home and how long they are in inpatient services. Since the demise of the Learning Disability Census in 2015 we don’t have very good information on how people are being treated, but the Assuring Transformation statistics do help us build up a bit of a picture, particularly in terms of the possible impact of Transforming Care on inpatient services.

One of the main things highlighted by Transforming Care has been having crisis and inpatient services close to home. The first column on the left in the graph below shows the distance from home of people in inpatient units (according to commissioners in the Assuring Transformation dataset) in August 2017. A quarter of people (25%) are in inpatient units within 20km of home, but almost as many people (23%) are in inpatient units more than 100km from home, and for a worrying 14% of people this information isn’t even known.

The graph below also shows information from the MHSDS, which with its focus on short-term mainstream mental health services, presents a very different picture. The middle column in the graph shows that three quarters (75%) of people who were in and out of an inpatient service within the calendar month of August 2017 were within 20km of home, with only 1% more than 100km from home. For those in inpatient services at the end of August 2017, according to the MHSDS (the right hand column), well over half (57%) were in inpatient services  less than 20km from home and 6% were in inpatient services over  100km from home.




 Another important aim of Transforming Care is to reduce the length of time that people spend in inpatient units. The first 5 columns on the left in the graph below show how long people have been in their current inpatient unit according to Assuring Transformation statistics, from March 2015 through to September 2017. There are small trends over time towards a greater proportion of people being in their current inpatient unit for shorter lengths of time, although in September 2017 15% of people had been in their current inpatient unit for 5 years or longer (so far).

Again, the right hand column in the graph shows the equivalent figures from the MHSDS dataset. These figures show that towards half of people (45%) had been in their inpatient unit for less than 6 months, although there were still also 12% of people who had been in their current unit for 5 years or more.

 
As I mentioned in the previous post, there is quite a lot of evidence that many people are moved around different inpatient services without ever leaving the inpatient service system. Assuring Transformation also reports information on how long people have been continuously within inpatient services (not just how long they have been in their current unit). The graph below shows this information from March 2015 to September 2017. The extent of people being transferred around can be clearly seen; in September 2017 over a third of people (36%) had been continuously in inpatient services for 5 years or longer, a proportion that has hardly changed from March 2015.


Finally, Assuring Transformation also reports the average length of time that people have been in their current inpatient unit, and continuously in inpatient services. The graph below shows that people were on average in their current inpatient unit for just under 3 years, with this length of stay gradually falling from March 2015. In contrast, the total length of time people have been continuously in inpatient services has increased slightly and is now standing at an average 5 years 6 months.





So, overall the types of mainstream mental health inpatient service largely reported in the MHSDS are generally close to home with people staying in them for short periods of time. Whether they are effective for the people with learning disabilities and autistic people using them, how people experience these services, whether the people using these services are the same as people using the more distant inpatient services reported in Assuring Transformation where they stay for years – we know very little about any of these questions. Within the largely ‘specialist’ inpatient services reported by Assuring Transformation, to date there seems to have been little change over time in how local these inpatient services are and how long people stay in them.

Friday, 24 November 2017

Transforming Care - Who is going in?

This blogpost is the second of five looking at the Transforming Care programme through the prism of the national statistics regularly produced by the ever excellent @NHSDigital.

The first blogpost looked at the overall number of people with learning disabilities and autistic people identified by the statistics as being in inpatient services. Among other things, this post looked at the different views provided by commissioners (via the Assuring Transformation statistics), who tend to focus more on people in specialist learning disability inpatient services, and mental health service providers (via the MHSDS), who tend to focus more on people with learning disabilities and autistic people in mainstream mental health inpatient services often for short periods of time and for many people apparently for the purposes of ‘respite’. This is important to remember when looking at the graphs to follow.

After this first post focusing on the overall numbers, the rest of the posts will look at four questions:
·        Who is going into inpatient services?
·        How far are people from home and how long are they in inpatient services?
       Planning
·        Who is going out from inpatient services?

Most of the statistics used will be from the Assuring Transformation statistics, which contain much more detailed information, although there are some comparisons with the MHSDS dataset where possible.

So – much of the focus of the Transforming Care programme has been on getting people out of inpatient units, but the slower than planned reduction in the overall number of people in these units suggests that there are still substantial numbers of people coming into these units. What do the statistics tell us about this?

Every month, the Assuring Transformation statistics report how many people have come into an inpatient unit according to commissioners. The graph below adds these together across two different years, October 2015 to September 2016, and October 2016 to September 2017, so we can see the number of people coming into these units and whether they have changed over time.



The first thing the graph shows us is the overall number of admissions to inpatient services increased over time, from 1,810 admissions in 2015/16 to 1,955 admissions in 2016/17. For whatever reason (and the reasons are potentially multiple and bewilderingly complicated) the number of people commissioners recognise as being admitted to these units is going up rather than down. The second thing to notice is that around a quarter of ‘admissions’ (the red chunk) are actually transfers from other hospitals (mainly other inpatient services of various types). This churn around the inpatient service system is something that will feature in later posts too. The third thing I want to mention is that around one in six admissions (the lilac chunk, 17%) are readmissions, where people had previously been in an inpatient service less than a year before. Finally, the purple chunk shows that most admissions to inpatient services (59%) are people who have not been in an inpatient unit for at least a year (or maybe never).

The much less detailed MHSDS dataset, with its focus on mainstream mental health inpatient services, reports much higher numbers of people with learning disabilities and autistic people being admitted to inpatient mental health services. In just one month, August 2017, the MHSDS reports 1,560 admissions to inpatient mental services, although most of these admissions are very short term (825 of these 1,560 admissions were out within the same calendar month).

What kinds of places are people being admitted to inpatient services coming from? The graph below shows this information from the Assuring Transformation statistics, for a period of a year from October 2016 to September 2017. Around half of people (935 people; 51%) were admitted from their ‘usual place of residence’. However, over a third of people (680 people; 37%) were admitted from other inpatient and/or hospital services, particularly from ‘acute beds’ (which presumably includes people being transferred from mainstream mental health inpatient services). A further 100 people (5%) were admitted from ‘penal establishments’ and 125 people were admitted from residential care services.

 

Overall, it seems like the pressures are continuing to build for which inpatient services are being used as a response. What these statistics don’t provide, which is much needed, is a picture of how many people are being supported in ways that avoid admissions to inpatient services in the first place, such as support from local community teams. This is also important in trying to understand why so many people are being readmitted to inpatient services within a year of them leaving. Over the year from October 2016 to September 2017, around a quarter of the people admitted to inpatient services (500 people; 26%) had had a Care and Treatment Review (CTR) before admission – of course what we don’t know is how many people had a pre-treatment CTR and didn’t then go into an inpatient unit. Finally, it is important to understand why people are being transferred around the inpatient service system and what impact these transfers have on people and families.

Wednesday, 22 November 2017

Through the keyhole - (still) trying to understand Transforming Care from the statistics

The Transforming Care policy/programme, led by NHS England, 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. Transforming Care as a programme, with its predecessors, has been going since 2012, and is due to wrap up as a programme at the end of March 2019. The effects of the Transforming Care programme should by now be visible in the statistics. As @MarkNeary1 has rightly pointed out, each cold number represents people, and we need to keep this in mind as our eyes glaze over at the numbers to follow. I also want to say hats off to @NHSDigital, who have unobtrusively been working to collect sensible information (no mean feat in the circumstances) and have been steadily improving the information they release.

I’ve done blahg after blahg on what the statistics might be telling us about how Transforming Care is going and I’m afraid this is going to be another one (there may well be more to follow…) that basically repeats what I’ve already said with updated information. This one is about the overall numbers of people in inpatient services.

There are currently two main sources of statistics about people with learning disabilities and autistic people in inpatient services, updated on a monthly basis by @NHSDigital. The first of these are monthly statistics from the Assuring Transformation collection http://content.digital.nhs.uk/article/7860/Reports-from-Assuring-Transformation-Collection . For these statistics, health service commissioners (both CCGs and NHS England, who themselves commission inpatient services at the secure end of things) report every month on how many people with learning disabilities and autistic people are in inpatient services, and various aspects of what’s happening to people in these inpatient services. The second are Mental Health Services monthly statistics (MHSDS) http://content.digital.nhs.uk/mhldsreports . This information comes from NHS and independent sector mental health service providers, and (among other things) reports how many people with learning disabilities or autistic people have been in inpatient services that month – inpatient services can include specialist learning disabilities inpatient services, but also includes mainstream mental health inpatient services.

Do these different sources of information tell us the same story about what’s happening with Transforming Care? Well, let’s go…through the keyhole. First up, what kind of an inpatient service system does Assuring Transformation show us?

The most obvious question is what’s happening to the number of people with learning disabilities and autistic people in inpatient services? Is it decreasing at the rate specified in the Transforming Care programme? The Assuring Transformation dataset gives a set of total numbers of people in inpatient services that does seem to be steadily reducing over time, from 2,775 people in March 2016 through 2,710 people in September 2016, 2,605 people in March 2017, to 2,445 people in September 2017. This would be a reduction of 11.9% in 18 months, and some people in NHS England and journalists quote this and similar figures to show the scale of progress and to say that fewer than 2,500 people are now in inpatient units. If you include the dark purple bars in the graph below, this is what you see.



However, to claim this scale of reduction is at best mistaken and at worst mendacious. As I mentioned above, this information comes from commissioners. As well as reporting figures at the end of every month, they can also update their figures from previous months to include people they hadn’t known about at the time. The longer back in time the statistics are, the more time commissioners have had to update their figures. And these updates add quite significant numbers of people (this is what the dark purple bars are). For example, the statistics for March 2016 reported in September 2017 include 2,615 people reported at the time, and an additional 160 people reported in later updates. The September 2016 statistics include 2,565 people reported at the time, and an additional 145 people reported in later updates. Obviously, by the time you get to September 2017 statistics, there has been no time for commissioners to add updated figures later on, so comparing March 2016 (with 18 months of updates) with September 2017 (with no time for updates) is not comparing like with like. Adding 160 people to September 2017 figures (around the number of people that seem to be added retrospectively) would give a figure of 2,605 people in inpatient services. On these figures there has still been a reduction in the number of people in inpatient services from March 2016 to September 2017, but this reduction is 6.1% rather than 11.9%.

 The number of people in inpatient services reported in the Assuring Transformation data collection is also much smaller than the number of people reported in the MHSDS statistics. The MHSDS statistics in their current format haven’t been going very long and they take longer to collate than the Assuring Transformation data, so I can’t compare the information across the two datasets over the whole time period I’m looking at. But comparing them at the most recent possible point in time, August 2017, shows big differences between the two datasets.

Assuring Transformation reports 2,465 people with learning disabilities and autistic people in inpatient services at the end of August 2017, whereas the MHSDS reports 3,265 people with learning disabilities and autistic people in inpatient services at the end of the same month. And this is only a snapshot of people in inpatient services at any one point in time – over the course of a year, how many people with learning disabilities or autistic people pass through an inpatient service? The only certainty is that it’s way more than 2,500 people.  

I think this big discrepancy also points to important differences across the two sets of information that are important to understand.

In contrast to Assuring Transformation, where the information comes from commissioners, the MHSDS statistics are from mental health service providers, which seem to be much better at identifying people with learning disabilities and autistic people in mainstream mental health inpatient services. For example, according to MHSDS statistics for August 2017, less than half of people with learning disabilities and autistic people in inpatient services at the end of June were in learning disability inpatient services (1,135 people; 34.6%). More people (1,420 people; 43.2%) were in adult mental health inpatient services, with other people in children and adolescent mental health or paediatric inpatient services (80 people), older people mental health inpatient services (130 people), or in non-mental health wards (15 people). The type of inpatient service was unknown for 515 people (15.7%).

The two datasets also report very different patterns of use of these inpatient services. In the Assuring Transformation dataset, only 10 people had been admitted and discharged within the calendar month of September 2017. In the MHSDS statistics 1,250 people had been admitted and discharged within the calendar month of August 2017. Of these 1,250 people admitted and discharged, for 425 people this was for the purpose of ‘respite care’ (in a mental health inpatient service???).

So, the Assuring Transformation statistics seem to be missing out a huge number of people with learning disabilities and autistic people who are using mainstream mental health inpatient services, often for very short periods of time. Because this information is very recent, we don’t know whether the number of people with learning disabilities and autistic people in mainstream mental health inpatient services has increased, decreased or stayed the same alongside the Transforming Care programme. We also don’t know how well mainstream mental health inpatient services are working for people, compared to ‘specialist’ learning disability inpatient services. Finally, we don’t know if the circumstances of the people going to mainstream mental health inpatient services are different in some way to those people who end up in learning disability inpatient services.

In contrast to this, it also seems that the MHSDS may be underestimating the number of people with learning disabilities and autistic people in specialist learning disability inpatient services. Why would commissioners be identifying more people than service providers? In the MHSDS, some of the big independent sector service providers like St Andrews are saying that there are substantial numbers of people with learning disabilities and autistic people in wards not identified as learning disability wards, such as children and adolescent mental health wards, adult mental health wards and older people’s mental health wards. There are also some people who independent sector service providers don’t seem to be identifying as people with learning disabilities or autistic people at all, where service commissioners are identifying them (there are around 500 more people in independent sector inpatient services identified in the Assuring Transformation dataset than in the MHSDS). It’s very hard for me to get my head round what is going on here. Are some people with learning disabilities and autistic people being put in places that do not ‘count’ for Transforming Care purposes, but that are still inpatient services?

Whatever is happening, it is clear that there are many more than 2,500 people with learning disabilities or autistic people using inpatient services of various kinds, particularly if you look at more than snapshots. It’s also obvious that the numbers in Assuring Transformation do not show large falls in the number of people in inpatient services, and that Assuring Transformation information isn’t taking into account what’s happening to people in general mental health inpatient services. It feels to me like this isn't even the end of the beginning...



Thursday, 2 November 2017

Employment statistics - quick update

A whole new raft of social care statistics relating to 2016/17 came out last week from NHS Digital. This includes statistics on the number of working age adults with learning disabilities getting long-term social care support who are in paid/self employment, according to councils. The statistics are available here http://digital.nhs.uk/catalogue/PUB30122 although they’re a bit scattered this time around.



The blogpost is a very quick update on the overall paid/self employment figures over time, as shown in the graph. Up to 2013/14, the information was collected for adults with learning disabilities aged 18-64 who were known to councils (so not necessarily getting regular social care support). From 2014/15, the information was only collected for adults with learning disabilities aged 18-64 who were identified as having learning disability as their primary reason for support and who were getting long-term social care support. This means we can’t assume continuity in the information collected over the whole time frame.

Even with this caveat, the statistics on employment show that things are getting (even) worse. The grey bars in the graph show that by 2016/17, only 5.7% of this population of working age adults with learning disabilities were reported by councils to be in any form of paid/self employment, no matter how part-time. This has dropped even from 2014/15, when the employment rate was 6.0%.
The gender gap in employment rates has also persisted; the purple line shows that in 2016/17 6.2% of working age men with learning disabilities were in paid/self employment, compared to 5.0% of women (the blue line).

One last quick thing I want to mention is the extreme variation in reported employment rates between councils. I don’t know whether this reflects radically different practices in supporting people with learning disabilities into employment and helping people to maintain employment, different employment prospects, different reporting practices across councils, or some combination of these. Why can Bexley report an employment rate of 20.6% when Lambeth reports an employment rate of 0.6%? Or Hartlepool report an employment rate of 15.2% when South Tyneside reports an employment rate of 1.2%? One thing that gives me pause about the validity of these statistics is that in 2015/16 councils reported that the employment status of over a third (37.7%) of working age adults with learning disabilities getting long-term social care support was ‘unknown’. If these people’s employment status was known, what would reported employment rates be?


If this is really a policy priority, it would be good to see some concrete evidence of it.

[Update: in the original version of this post, I cited the overall rate of employment as 5.2% when it is 5.7% - I have corrected this. 5.2% is the median employment rate looking across local authorities].

Tuesday, 3 October 2017

A real return on investment - investing in people with learning disabilities

I’ve been following @garybourletLDE , @AliciaWood___ , @hillsideliz , @SScown , @LearningDisEng and others who have been subjecting themselves to the UK (English?) party political conference season, asking the questions that need to be asked and trying to direct politicians’ attention to the realities of the lives of people with learning disabilities.



When local authorities are considering where to put the money they are entrusted with, what are they looking for? Among other things, I think they’d be wanting: 1) improvements to the health and wellbeing of people in their local communities; 2) relatively stable, connected communities with good levels of employment in good jobs; 3) good, sustainable and affordable housing that matches the needs of local communities; 4) their investment to be recirculated within local businesses and enterprises; and 5) for their investment to be efficient and cost-effective.

I think a local authority investing in really good support for people with learning disabilities in their area will achieve everything I’ve listed above, in a maximally efficient and cost-effective virtuous circle. What do I mean by really good support? Something like the following:

  1.  First of all, use the resources that are available in your local area. Invest properly in vibrant self-advocacy organisations and family-led organisations. They will bring you expertise, creativity, and local knowledge of life’s realities. If you let them, they will generate cost-effective solutions rooted in local communities, at a far more reasonable rate than management consultants. And by investing properly in them, you will be helping to establish entrepreneurial local organisations that can offer vital support to a wide range of local organisations, such as training, consultancy and the production of accessible information for local health and social care services, leisure services, the police, transport and businesses.
  2. Invest in local communities to help people live connected, fulfilling lives locally – Community Circles being one example that also encourages local community cohesion. Shared Lives is another example of a living option that some people may choose which does not require additional housing, matching people with learning disabilities with others in their local community who have space and a willingness to share that space. These are really cost-effective, with the social care investment being kept and shared within local communities.
  3. With the support of self-advocacy, families and local enterprise, focus the commissioning of support for people with learning disabilities on small, local enterprises, developed through collaborative ideas generated from and by people with learning disabilities and families. This will develop efficient, cost-effective local enterprises with a genuine commitment to people with learning disabilities and the locality. Investment at a council level in supporting these small enterprises with pooled functions like HR, payroll, legal support etc will ensure they stay efficient and focused. Work to promote ‘scaling across’ rather than ‘scaling up’ – local small enterprises can encourage others to develop, rather than forcing them into expanding hugely into large enterprises that become sclerotic, remote and less efficient, with profits from local investment becoming siphoned out of the locality. Co-operatives, community interest companies and similar social enterprises are relevant here. Radically change bureaucratic procurement and tendering processes that stack the deck against small, innovative local entrepreneurs, and use the money saved to invest in ways to keep developing and maintaining local organisations.
  4. Ensure that you invest properly in these local support organisations, such that support workers can be decently paid. This will encourage a stable, skilled and committed workforce that will stay in the area and have money in their pockets to spend in local businesses, rather than ending up with a transient, unstable workforce.
  5. Support local businesses and organisations of all sorts to be hospitable to people with learning disabilities. They’re missing out on potential customers and contributors if they’re not.
  6. Invest heavily in good quality supported employment support with people with learning disabilities, developed and delivered locally. Many, many more people with learning disabilities want paid work than currently have the opportunity to do so, and on-the-job support and support to keep people working well in jobs is a highly cost-effective investment. Local employers gain a stable workforce with bespoke on-the-job training to do specific tasks they need doing, and ongoing support to keep people working well. Ensure that the paid work is good work at levels and with numbers of hours that pay people a decent wage. This will ensure that people with learning disabilities have disposable income, which they will spend overwhelmingly locally, recirculating the investment straight back into the locality. All sorts of other good things for people with learning disabilities and local communities follow from good work. Also encourage entrepreneurship and the development of enterprise amongst individuals and groups of people with learning disabilities.
  7. Invest in local, attractive, affordable housing that is accessible to everyone, including people with learning disabilities. Put the investment into supporting people with learning disabilities within local homes in local neighbourhoods to lead active lives as part of their local communities – belonging, contributing. This investment will again put money back into local businesses (as people maintain their homes, buy food and clothes, and enjoy themselves in local leisure facilities that help keep communities vibrant places to be). For many people, you will also be helping their families too, among other things in terms of their potential for paid employment themselves.
  8. Provide guaranteed minimum personal budgets (and personal health budgets, and integrated personalised commissioning) for people over long periods of time (5 years? 10 years? longer?). Strip away needless bureaucracy in assessing/reviewing/monitoring, and use the money saved to invest in supporting people and families with PBs in legal/HR/payroll issues, and in supporting people to really plan for their futures, individually and collectively. People are in the best position to invest their personal budget wisely and efficiently, without waste, and again will invest locally.
  9. Invest in social workers who have the time to get to know people properly, and who respect people in the decisions they make about their lives.


I’m sure there is much more to be said and I’ve ignored many vital things. My point is that from a local authority point of view these forms of investment are highly cost-effective and likely to form a virtuous circle, and help to achieve the vibrant, inclusive local communities local authorities are aiming for while supporting local business and supporting people with learning disabilities to live more active, fulfilled and healthier lives.

Which is why I find it weird that so many local authorities are throwing public money at large, quasi-institutional residential services for people with learning disabilities. Local authorities are paying for layers of bureaucracy, profits that are not transparent and are siphoned out of the locality as part of big companies’ profits, and buildings that do not improve or contribute to general housing or amenities in the locality. They are paying for a low waged, transient workforce. They are paying for people to be shut away, such that local businesses and enterprises see very little of the public money sunk into these places and don’t see the benefit of people with learning disabilities as employees and customers. Over time, local communities become less vibrant, less connected, less cohesive. And inactive, isolated people with learning disabilities are more likely to become seriously ill and experience abuse and neglect. A vicious and self-defeating cycle.

What are local authorities waiting for? Be smart – invest in people with learning disabilities.


With thanks/apologies to @neilmcrowther for unwittingly triggering this line of thought.