Thursday, 17 January 2019

New statistics on restraint, seclusion and segregation - what do they tell us?


The ‘restrictive interventions’ (or more bluntly restraint, seclusion and segregation) being used by inpatient services on people with learning disabilities or autistic people has been gaining some public and political attention, thanks to the doughty work of many campaigners and journalists. The Secretary of State for Health (and Care – remember what that is?) has commissioned the Care Quality Commission to “review the use of restraint, prolonged seclusion and segregation for people with mental health, a learning disability and/or autism”.

Before today (17 January 2019) there have been no publicly available statistics on what inpatient units are doing to people with learning disabilities or autistic people in inpatient units in terms of ‘restrictive interventions’ since information collected from the last Learning Disability Inpatient Census in September 2015 (see this blogpost for details). Recently, both radio (File On 4) and TV (Sky News) gained and made public data from NHS Digital that it was already routinely collecting on these ‘restrictive interventions’ (see this blogpost for more details of the data obtained by File On 4). 

Today, as part of its monthly digest of statistics concerning people with learning disabilities and autistic people in inpatient units, NHS Digital included for the first time additional tables about the ‘restrictive interventions’ experienced by people with learning disabilities and autistic people in these places. This blogpost takes a first quick look at some of the information from these tables (taken from the LDA Monthly Statistics from MHSDS – October 2018: Reference Tables). There is undoubtedly lots more in these tables that I’ve missed, and also it’s more than possible that I’ve made some errors of interpretation/basic maths, so please do say if I’ve got something wrong and I’ll correct it.

So, where do these statistics come from? They come from the Mental Health Services Dataset (or MHSDS), which is collected from mental health service providers (both NHS and independent sector) about everyone using their inpatient mental health services. For a while now, information has been flagged about people with learning disabilities and/or autistic people in these services and reported monthly alongside Assuring Transformation data (a dataset collected by service commissioners that NHS England tend to report when discussing the trajectory of Transforming Care). The coverage of people and services in the Assuring Transformation dataset and the MHSDS overlaps but is not the same:
  • the MHSDS does not include everyone in the Assuring Transformation dataset because some big ‘specialist’ inpatient services don’t report to the MHSDS (for reasons that escape me https://chrishatton.blogspot.com/2018/03/now-you-see-me-now-you-dont-independent.html )
  • the MHSDS includes a lot of people with learning disabilities and/or autistic people who are in generic mental health inpatient units (rather than specialist learning disability units), often for short periods of time. For example, the MHSDS reports that at the end of September 2018 there were 3,625 people with learning disabilities or autistic people in some form of inpatient unit/ward. During the month of October, 445 people were admitted and were still an inpatient by the end of October, 500 people there at the beginning of the month were discharged at some point in the month, and 900 people were both admitted and discharged within the month of October. So by the end of October, there were 3,575 people in some form of inpatient unit/ward.

Among the many, many things collected in the MHSDS, information is collected from service providers on every instance of ‘restrictive intervention’, broken down into:
·        Physical Restraint (prone);
·        Physical Restraint (excluding prone);
·        Chemical Restraint;
·        Mechanical Restraint;
·        Seclusion;
·        Segregation;
·        a category where a restrictive intervention has been recorded but the specific type of intervention has not been recorded.

Helpfully, NHS Digital report this information in two ways; by the number of people who have been subject to a restrictive intervention at least once in the month of October 2018; and by the number of restrictive interventions that have been used in the month of October (because people can be subject to multiple instances of restrictive interventions).

I’m going to start by going through the statistics on the number of people with learning disabilities or autistic people who have been subject to at least one restrictive intervention through the month of October 2018. In total 435 people were recorded as being subjected to restrictive intervention at some point in the month of October. In terms of specific types of restrictive interventions (these numbers will add up to more than 435 as the same people could have experienced more than one type of restrictive intervention):
·        100 people were subject to prone physical restraint
·        275 people were subject to another form of physical restraint
·        65 people were subject to chemical restraint
·        20 people were subject to mechanical restraint
·        80 people were subject to seclusion
·        5 people were subject to segregation
·        170 people were subject to a restrictive intervention where the form of that intervention was not recorded

I think, taking into account people going into and leaving inpatient units throughout the month, that in total 4,970 people with learning disabilities or autistic people were in some form of inpatient unit at some point in October (3,125 who were there at the start of October and stayed, plus 445 people who were admitted during the month of October and stayed, plus 500 people who were there at the start of October and were discharged during the month, plus 900 people who went in and out during October – I feel I need to show my working so you can tell me if/where I’ve made a mistake).

[As an aside, this number of people is a lot bigger than Assuring Transformation (and doesn’t even include some people in the Assuring Transformation dataset), and personally I think should be an important part of any programme designed  to improve support for people with learning disabilities or autistic people in distress. As well as people who are stuck in terrible conditions for years, there are a lot of people in and out of generic mental health inpatient units and we understand very little about how/if that’s working for people].

So, overall I think 8.8% (435 out of 4,970 people) of people with learning disabilities or autistic people spending some time in an inpatient unit/ward in October 2018 were recorded as subject to some form of restrictive intervention. This information is also broken down by age group, so I have tried the same calculations for each age group listed, showing the percentage of people in each age group who were subject to at least one restrictive intervention:
·        13.7% of people aged under 18 (65 out of 475 people in inpatient units/wards)
·        11.2% of people aged 18-24 (105 out of 940 people)
·        8.5% of people aged 25-34 (115 out of 1,350 people)
·        6.9% of people aged 35-44 (60 out of 870 people)
·        5.3% of people aged 45-54 (35 out of 660 people)
·        6.4% of people aged 55-64 (25 out of 390 people)
·        8.8% of people aged 65+ (25 out of 285 people)

As I mentioned earlier, NHS Digital also report the number of restrictive interventions used on people with learning disabilities or autistic people during October 2018. In total 2,700 instances of restrictive intervention were recorded over the month, broken down according to the following types of restrictive intervention:
·        285 instances of prone physical restraint
·        1,485 instances of another form of physical restraint
·        225 instances of chemical restraint
·        65 instances of mechanical restraint
·        190 instances seclusion
·        5 instances segregation
·        In 445 instances of restrictive intervention (16.5% of all recorded instances), the form of that intervention was not recorded

On average, among those people in inpatient units/wards subject to restrictive intervention, people experienced 6.2 instances of restrictive intervention per person during October 2018 (2,700 restrictive interventions among 435 people). By age group:
·        People under 18 experiencing restrictive intervention were subject to an average 11.7 instances of restrictive intervention per person (765 restrictive interventions among 65 people)
·        People aged 18-24 experiencing restrictive intervention were subject to an average 5.5 instances of restrictive intervention per person (580 restrictive interventions among 105 people)
·        People aged 25-34 experiencing restrictive intervention were subject to an average 5.9 instances of restrictive intervention per person (675 restrictive interventions among 115 people)
·        People aged 35-44 experiencing restrictive intervention were subject to an average 5.7 instances of restrictive intervention per person (340 restrictive interventions among 60 people)
·        People aged 45-54 experiencing restrictive intervention were subject to an average 4.3 instances of restrictive intervention per person (150 restrictive interventions among 35 people)
·        People aged 55-64 experiencing restrictive intervention were subject to an average 4.0 instances of restrictive intervention per person (100 restrictive interventions among 25 people)
·        People aged 65 or older experiencing restrictive intervention were subject to an average 3.6 instances of restrictive intervention per person (90 restrictive interventions among 25 people)

NHS Digital also provide statistics according to individual provider organisations, categorised according to whether they are NHS or independent sector. For obvious reasons I thought this would be worth looking at in more detail. But when I started looking, it became clear to me that a lot of provider organisations are simply not reporting data on restrictive interventions properly, and that this lack of proper reporting is likely to be more common in the independent sector.

For example, there are 14 independent sector providers listed in the MHSDS for October 2018 (although as we know from Ian Birrell and others, many of these different ‘brands’ are ultimately owned by a small set of mainly U.S. companies/hedge funds). Only two of them (Cygnet and St Andrews) record 5 or more instances of restrictive intervention (of any type) happening in the month of October 2018 (below 5 and the numbers are suppressed by NHS Digital to prevent individuals being potentially identifiable). So the following organisations (I’ve just listed the ones with more than 5 people in them at the end of October 2018) are publicly reporting that, in effect, no restrictive interventions were visited on any people with learning disabilities or autistic people in their inpatient units – and there were 1,345 people in independent sector inpatient units at the end of October 2018:
·        CAS Behavioural Health Ltd (160 people at the end of October)
·        Elysium Healthcare (355 people)
·        Jeesal Akman Care Corporation Ltd (50 people)
·        LiveWell SouthWest (25 people)
·        Partnerships in Care Ltd (220 people)
·        Priority Group Ltd (10 people)
·        The Huntercombe Group (80 people)

Even where an organisation is reporting that restrictive interventions are happening, in some organisations the type of restrictive intervention is very commonly not reported. For example, St Andrews reported their staff doing 810 instances of restrictive interventions in October 2018 – but in over half of these (420 instances, 52%) the type of restrictive intervention was not recorded. Looking down the longer list of NHS Trusts in this MHSDS dataset, I could only find one where this was an issue (South London and Maudsley NHS Foundation Trust, where the type of restrictive intervention was not recorded for all 25 instances of restrictive intervention).

It’s great to see this information being made public by NHS Digital, and over time a more complete picture will build up about the restrictive interventions being applied to people with learning disabilities and autistic people in inpatient units. From this first month of information, I think there are a few things we can say already:

·       A lot of people are subject to restrictive interventions, of multiple types, on multiple occasions, in a short space of time. In the month of October 2018, 8.8% of people with learning disabilities and autistic people in inpatient units/wards experienced some form of restrictive intervention (435 out of 4,970 people). If people were subject to restrictive intervention, on average they were subject to 6.7 instances of restrictive intervention during the month (2,700 restrictive interventions among 435 people).

·       Physical restraint, including prone restraint, is commonly used. The most commonly reported types of restrictive intervention were physical restraint other than prone restraint (1,485 instances of restrictive intervention), prone restraint (285 instances), chemical restraint (225 instances) and seclusion (190 instances). For 16.5% of restrictive interventions (445 instances) the type of restrictive intervention was not recorded, although almost all of these are accounted for by one organisation, St Andrews (where the type of restrictive intervention was not recorded for 420 instances of restrictive intervention in October).

·       Young people aged under 18 are the age group most likely to be subject to restrictive interventions (13.7% of young people in inpatient units/wards) and, if they do, to experience twice as many instances of restrictive intervention (11.7 instances of restrictive interventions per person in October 2018) as other age groups.

·       It seems that some organisations, particularly those in the independent sector, are not properly recording or reporting information on restrictive interventions, or are simply not reporting this information at all.

Monday, 7 January 2019

Where are we at with social care for adults with learning disabilities?




This year I’ve going to try and write slightly more blogposts than last year (don’t say you weren’t warned), with a focus on information rather than opinion where possible. So, on the day when the NHS Long Term Plan is published, it makes perfect sense to start with a blogpost on… social care. This post will look at trends in the data produced by NHS Digital on social care statistics related to adults with learning disabilities. There will be graphs.

Councils with social services responsibilities return information to NHS Digital every year on how many adults are using various forms of social care, and how much councils spend on social care (this doesn’t include other types of state funding relevant to social care, such as housing benefit as part of supported living support). When looking at trends over time it’s important to remember that there were big changes in the way information was collected between 2013/14 and 2014/15, the one with the biggest impact being that up to 2013/14 most information was collected on people known to social services whereas from 2014/15 onwards most important is collected only on people getting ‘long-term’ social care. Most of the information for 2017/18 can be found here and here.

First, how many adults with learning disabilities are getting access to social care? From 2014/15 the types of long-term social care support people get have been grouped into one of six mutually exclusive categories: residential care, nursing care, direct payment only, support via a personal budget partly including a direct payment, a council-managed personal budget, and council-commissioned community support only. For most of these categories there is also equivalent information from 2009/10.

The first graph below show the number of adults with learning disabilities aged 18-64 getting various types of personal budget or council-commissioned community support from 2009/10 to 2017/18 (bearing in mind the change in data collection between 2013/14 and 2014/15). This graph shows that adults with learning disabilities aged 18-64 were most commonly getting support in the form of council-managed personal budgets (the extent to which most of these feel any different to council-commissioned community services is debatable). The number of people getting support in the form of direct payment only or with part-direct payment has been consistently rising over time.


The second graph below presents the same information for adults with learning disabilities aged 65+, from 2014/15 (when the information first became available). Again, council-managed personal budgets are the most common form of community-based support for older adults.


The next graph below (using the same axis for ease of comparison) shows the number of adults with learning disabilities aged 18-64 in residential care and nursing care. The graph shows that although the number of adults aged 18-64 in residential care and nursing care have been gradually declining over time, they still represent 20% of all adults with learning disabilities aged 18-64 getting long-term social care.



The same information for adults with learning disabilities aged 65+ is in the next graph. The number of older adults with learning disabilities in residential care and nursing care has if anything slightly increased over time, with over 40% of older adults with learning disabilities getting long-term social care in residential or nursing care.


It’s also highly likely that these figures under-represent the number of people with learning disabilities in residential and nursing care. From 2014-15 everyone using social care is allocated to a single category of ‘primary need’ – learning disabilities is one of these categories, but it is also possible that a person with learning disabilities may be allocated to a different ‘primary need’ such as physical support, sensory support, mental health support, or support with memory and cognition (e.g. dementia). We don’t know the extent to which people with learning disabilities, particularly as they get older, are re-assigned to a different category and potentially moved into generic residential or nursing care places.

The temptation for cash-strapped commissioners to do this is strong as residential and nursing care for people with learning disabilities are a lot more expensive than residential and nursing care for other groups, and residential and nursing care for people aged 18-64 are much more expensive than residential and nursing care for people aged 65+. In 2017/18 the average fee of residential care for adults with learning disabilities aged 18-64 was £1,476 per week, compared to the next most expensive £1,159 for adults aged 18-64 needing sensory support. Nursing care for adults with learning disabilities aged 18-64 was charged at an average £1,246 per week, compared to the next most expensive £862.38 per week for people needing physical support. Residential care for adults with learning disabilities aged 65+ was an average £961 per week, compared to the next most expensive £567 per week for older people needing physical support. Finally, nursing care for adults with learning disabilities was an average £833 per week, compared to the next most expensive £660 per week for older people needing mental health support.

So far this is pretty broad-brush information, but from 2009/10 councils have also provided more detailed information on where they think adults with learning disabilities aged 18-64 are living. The differences between information up to 2013/14 (on everyone known to councils) and information from 2014/15 (on people getting long-term social care support) are pretty stark here, as most numbers are considerably lower in 2014/15 compared to 2013/14. The graph below is very complicated as there are a lot of categories, but there are a couple of things that stand out for me.

First, by far the most common living situation for adults with learning disabilities aged 18-64 is ‘settled mainstream housing with family/friends’ – i.e. for almost everyone living with family – in 2017/18 this applied to 48,165 people, 36.7% of all working age adults with learning disabilities getting long-term social care. And the number of people councils are reporting as living with families is rising rapidly. Also rising rapidly are the number of working age adults with learning disabilities in supported accommodation of some kind, with tenancies previously rising but now stalled and residential acre gradually decreasing. Worrying is the small but rapidly rising number of working age adults with learning disabilities in various types of obviously temporary accommodation (short-term stay with family/friends, council-provided temporary accommodation and other temporary accommodation), rising by 32% in three years from 1,205 people in 2014/15 to 1,590 people in 2017/18. And these figures don’t include most adults with learning disabilities in inpatient services - councils only recorded 415 people in these places in 2017/18, with their reported numbers (along with their apparent sense of responsibility) dropping rapidly over time.



One final thing I’d like to mention about the number of adults with learning disabilities getting social care support is that, as far as we can tell, the numbers are continuing to slowly increase, with councils seemingly trying to protect services for adults with learning disabilities as much as they can. However, the small increases we see are nowhere enough to keep up with the likely increase in the number of adults with learning disabilities needing social care support. In 2012, a team led by Eric Emerson produced some projections of the number of adults with learning disabilities likely to need social care support up to 2030. Even under the most restrictive funding scenario (with only people with critical or substantial needs getting social care support) we estimated that by 2018 there would be 166,114 adults with learning disabilities needing social care support, compared to the 147,920 adults actually getting long-term social care support in 2017/18.

One final graph – on the money that councils spend on social care for adults with learning disabilities from 2014/15 to 2017/18. These figures are not adjusted for inflation, although the squeeze on social care spending has meant that social care inflation has been relatively low in recent years. A couple of observations. Overall, the amount of social care funding for adults continues to increase slightly in absolute terms, from £4.98 billion in 2014/15 to £5.54 billion in 2017/18, although an annual inflation rate of 3% would pretty much wipe this increase out. Second, almost the entire social care budget (98.5%) is spent on long-term support rather than short-term support. Finally, despite apparent reductions in their use, social care spending on residential and nursing care for adults with learning disabilities still represents 37% of all social care expenditure on adults with learning disabilities.



I hope this blogpost provides some useful information. I think it shows that councils are trying to protect social care funding for adults with learning disabilities relative to the huge cuts in income they have experienced. However, this isn’t nearly keeping pace with the number of people needing social care support, and there are worrying signs that there are likely to be large numbers of adults with learning disabilities either getting no support at all, or getting support that isn’t right for them, with immediate and longer-term consequences for them and their families.

Tuesday, 2 October 2018

Restraints, assaults and self-harm in inpatient units


The BBC Panorama exposure of how people with learning disabilities were abused by staff was over 7 years ago now, and despite the ongoing ministrations of Transforming Care the litany of abusive practices in ‘specialist’ learning disability inpatient units and residential care homes continues to the present day, and no doubt into the future.

Given what has happened at Winterbourne View and beyond, a central concern of the Transforming Care programme should be to ‘transform’ what actually happens to people in inpatient services. How many people, how often, experience different types of ‘restrictive intervention’ – physical restraint (including prone restraint where people are pinned to the floor), seclusion (solitary confinement), mechanical restraint (being physically contained so you can’t move), or being subjected to heavy duty medication? And that’s before you take into account self-harm or being physically assaulted by other people in the same place as you.

Government initiatives since Winterbourne View have clearly said that the use of these ‘restrictive interventions’ should be minimised and, in the case of prone restraint, stopped altogether (https://www.gov.uk/government/publications/positive-and-proactive-care-reducing-restrictive-interventions ), and that the kinds of medications used in these inpatient services (mainly antipsychotics and rapid tranquilisers) should be seriously reduced as well (https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/ ).
So there is a clear steer about what should be happening. What is actually happening in these inpatient units? Are things getting better?

From 2007 to 2015, we got a pretty regular picture of what was being done to people in inpatient units from a census that was carried out on all people in inpatient services for people with learning disabilities and/or autistic people in England. This blogpost from a couple of years ago summarises this information https://chrishatton.blogspot.com/2016/04/adverse-experiences.html . Overall, by September 2015:
  • 23% of 3,000 people in these inpatient units had experienced at least one physical assault in the last three months
  • 24% of people had experienced at least one episode of self-harm in the last three months
  • 13% of people had experienced seclusion at least once in the last three months
  • 34% of people had been subjected to hands-on-restraint at least once in the last three months
  • 72% of people had been ‘given’ antipsychotic medication in the last 28 days
  • 11% of people had been ‘given’ rapid tranquilising medication in the last 28 days

For all of these experiences, many people had experienced them many times, and trends over time varied (so the number of people experiencing physical assaults or hands-on restraint had reduced, but the number of people experiencing seclusion had increased).

What has happened since 2015, now that Transforming Care has taken shape as a national programme? In public, silence. The regular inpatient census was stopped in 2015, on the grounds that other sources of information would take up the slack so we didn’t need the census any more. The Assuring Transformation dataset, which NHS England uses to count the progress or otherwise of Transforming Care, doesn’t include anything about ‘restrictive interventions’, assaults, or self-harm.

Another dataset, however, does. The Mental Health Services Dataset (MHSDS) is collected from mental health service providers (both NHS and independent sector) about everyone using their inpatient mental health services, and for a couple of years information has been flagged about people with learning disabilities and/or autistic people in these services and reported alongside the Assuring Transformation data (https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics ). The coverage of people and services in the Assuring Transformation dataset and the MHSDS overlaps but is not the same:
  1.  the MHSDS does not include everyone in the Assuring Transformation dataset because some big ‘specialist’ inpatient services obviously don’t report to the MHSDS (for reasons that escape me https://chrishatton.blogspot.com/2018/03/now-you-see-me-now-you-dont-independent.html )
  2.  the MHSDS includes a lot of people with learning disabilities and/or autistic people who are in generic mental health inpatient units (rather than specialist learning disability units), often for short periods of time. For example, the MHSDS reports that there were 3,635 people with learning disabilities and/or autistic people in inpatient services at the end of June 2018 – 895 of these people were admitted and discharged within the month of June.

The MHSDS is a big beast of a dataset, and it collects A LOT of information, including:
  • ‘Restrictive interventions’, broken down into: Physical Restraint (prone); Physical Restraint (excluding prone); Chemical Restraint; Mechanical Restraint; Seclusion; Segregation; and a category where restraint has been recorded but the specific type of restraint has not been recorded.
  • Assaults by another person using the service.
  • Self-harm.  


This information has never been released specifically focusing on people with learning disabilities and/or autistic people in mental health inpatient units. However, the redoubtable Lucy Adams of BBC Scotland has obtained this information from NHS Digital for the File on 4 programme ‘Transforming Care – Is It Working?’ which you should be able to find here https://www.bbc.co.uk/programmes/m0000mkd  File on 4 itself and an article in the Guardian (https://www.theguardian.com/society/2018/oct/02/physical-restraint-used-on-50-more-nhs-patients-with-learning-disabilities ) have covered the main messages coming out of this information – this blogpost provides a bit more of a detailed look at the numbers released by NHS Digital.  

The first graph below shows the total number of restraints that people with learning disabilities and/or autistic people in mental health inpatient units have been subjected to, for the calendar years of 2016 and 2017. The figure for 2018 has been projected from figures provided for the first 5 months of 2018.




In 2016, people were recorded as being subjected to restraint on 15,065 occasions. In 2017 this figure had increased by exactly 50%, to 22,620 restraint ‘episodes’. If the projected figures for 2018 are right, the number of times people are restrained is set to increase even further, to 25,812 episodes.

 The next graph below shows the particular types of restraint that were recorded for people with learning disabilities and/or autistic people in mental health inpatient units.




The most common type of restraint is Physical Restraint (excluding prone restraint): in 2016 this happened 8,785 times, increasing to 14,490 times in 2017 and projected to increase further to 17,350 times in 2018.

Prone restraint (which isn’t supposed to ever happen) occurred 2,250 times in 2016 and 3,170 times in 2017, with 2,890 episodes of prone restraint projected for 2018.

Mechanical restraint is less common, and seems to be decreasing (535 times in 2016; 365 times in 2017; projected 265 times in 2018).

Chemical restraint (this is where people are given medication on spot, in addition to any prescribed antipsychotic or other medication they may be on) of people happened 1,880 times in 2016, increasing to 2,360 times in 2017 and projected to rise further to 2,830 times in 2018.

While segregation is relatively rare (155 times in 2016; 125 times in 2017; projected 230 times in 2018) seclusion is common and seems to be increasing – from 1,460 times in 2016 to 2,100 in 2017 and projected to rise further to 2,245 times in 2018.

One of the many things that worries me about this information is the large and increasing number of restraints that aren’t recorded as any particular type of restraint; from 1,590 episodes of restraint in 2016, to a massive 6,260 in 2017 (over a quarter, 28%, of ALL restraints recorded) and a projected 5,700 in 2018. Why should this be so, if the recording of restraints is supposed to be improving? And what types of restraint is this coding hiding – are the numbers of prone restraints even higher than these figures suggest?

The final graph below shows the number of reported assaults and episodes of self harm that people experienced, both of which are high and rising.




The number of assaults experienced by people with learning disabilities and/or autistic people in mental health inpatient units 3,685 in 2016, increasing hugely to 9,050 in 2017 and currently projected to be 6,350 in 2018.

The number of episodes of self-harm was 7,125 in 2016, increasing to 7,795 in 2017 and projected to increase again to 8,880 in 2018.


What do these statistics tell us? They are not comparable with the earlier information from the inpatient censuses because they report the number of episodes rather than the number of people experiencing them, the categories used to report restraint are different, and the types of services included overlap but are not the same.

But they are shocking statistics. Types of restraint which aren’t supposed to happen at all, such as prone restraint, are both common and seemingly increasing. Other forms of restraint, and experiences such as assault and self harm, also seem to be on the increase. Can it be because there is now better reporting (why did it take so long? What on earth was happening before?) – if so then why is the type of restraint not recorded for over a quarter of restraint episodes? Are there more people with learning disabilities and/or autistic people in inpatient services – this is not what NHS England are telling us.

One of the things I find most disturbing, though, is that these figures would never have seen the light of day without the BBC being persistent in getting hold of the information. These statistics are vital for the public to understand what is happening with Transforming Care, but they were (and are) being kept secret. They could also be used to understand a lot more that would be useful to the Transforming Care programme, but there is no sign that NHS England or others are using this information to inform what they are doing. How do independent sector units compare to NHS units? What about different types of unit? How are people doing in generic mental health inpatient units – a large group of people that should be central to Transforming Care but that seem to be completely ignored.

These habits of secrecy and defensiveness do no favours to the effectiveness of the Transforming Care programme, and do a great disservice to people with learning disabilities and/or autistic people and their families. There is no reason for it – transparency will not kill, but the opposite might.


Wednesday, 12 September 2018

Valuing People Then - The Government Response to the LEDER report

Today (12th September 2018) the government response to the Learning from Deaths Review (LeDeR) report was published (badged as coming from the Department for Health and Social Care and NHS England). The LeDeR project is being run by Bristol University (the same group who ran the Confidential Inquiry into the Premature Deaths of People with Learning Disabilities), and is working to put into place a national system for reviewing the deaths of people with learning disabilities across England. A report of progress so far on the LeDeR project was finally published in May 2018 (despite the date on the report being December 2017). At the time I wrote two blogposts about what the report said and the circumstances of its publication so I don’t want to go over this ground again here: suffice it to say for this blog that the report made 9 recommendations about what needed to happen to improve how people’s deaths were reviewed and to make a start on stopping the shocking scale of needless deaths (may it never stop being shocking) experienced by people with learning disabilities.

Over three months after the LeDeR report was published (and presumably at least nine months after NHS England and the government saw the LeDeR report in December 2017), the government has published its response. The response is 23 pages long, and mainly goes through each of the 9 recommendations in turn, with some ‘actions’ outlined at the end of each section. This blogpost will pick out some aspects of the responses to specific recommendations, and then wind up with a few more general thoughts at the end. I’m sorry but this blogpost is long, detailed and probably tedious – my excuse (as always) is that to test the reality of government grand claims about what they’re going to do, it’s important to delve into what they’re actually committing themselves to. Often there’s quite a gap between the two…



LeDeR report recommendation 1: Strengthen collaboration and information sharing, and effective communication, between different care providers or agencies.

This is really important, as so many inquests into the premature deaths of people with learning disabilities have shown that people and organisations paid to be in the lives of people with learning disabilities can be more energetic in passing the buck than in actually working together to support someone.

The government response to this recommendation is long on optimistic generalities and a rounding up of things that are already happening (some of which are relevant to the recommendation, others of which are not), and short on meaningful actions (2 specific actions are outlined in this section). 

Things already happening mentioned by the government here include annual health checks, health action plans, the named social worker model, and digital health records initiatives. All of these are useful, but they (with the exception of the named social worker model) are not about how to make different organisations work together. This section also says that the LeDeR reviews themselves will prompt this sharing – this may be true for people who are already dead, but there is little on how to make this happen for people who are still alive. The NHS Improvement Learning Disability Standards recently produced by NHS Improvement (and mentioned here) are potentially promising, but the government response doesn’t include any analysis of why collaboration and information sharing isn’t happening (with fatal consequences for some people), any details or actions about how they are going to improve collaboration and information sharing, how they would know if it’s happening or not, and what they’re going to do about places that fall short.

A good example of the mismatch between recommendations and proposed actions happens in this section, where 1 of the 2 actions (the other one being a vague action for NHS England to report annually to DHSC, which you would hope would be happening in any minimally functional programme of work) concerns the NHS England Accessible Information Standard. This Standard (about improving the accessibility of information for people using NHS services) is not about improving information sharing between organisations, it doesn’t apply to any agencies other than those NHS England is responsible for, and there are no actions described here to monitor if/how the Standard is being used, if it makes a real difference to people using services, and what is going to happen to services who aren’t using it. The ‘action’ is for the Care Quality Commission (CQC) and NHS Improvement to produce a report on accessible information in learning disability services in NHS Trusts by October 2019 – there is nothing on how this addresses the recommendation or what actions would follow this report.

Recommendation 2: Push forward the electronic integration (with appropriate security controls) of health and social care records to ensure that agencies can communicate effectively, and share relevant information in a timely way.

This recommendation is about getting important health information about people with learning disabilities to be more routinely and automatically portable across different bits of the NHS, so that people with learning disabilities and their families don’t have to carry the responsibility for being the sharer of all this information over and over again and emergency health services will have at least basic information about a person to avoid catastrophic errors.

NHS England is already doing some good, careful work on this, like including extra information about people’s health in electronic Summary Care Records that different NHS services can see, and putting a ‘Reasonable Adjustments’ flag on a person’s electronic health record to outline what reasonable adjustments are needed for the health service to really work for that person.

The 3 actions in the government response here are about reporting back and going on to produce guidance from this ongoing work. The big question with all of these initiatives (shared by those developing them, I think) is, once they are up and running, will different health professionals actually use them and will they make a real difference to how people are treated in health services?

Recommendation 3: Health Action Plans developed as part of the Learning Disabilities Annual Health Check should be shared with relevant health and social care agencies involved in supporting the person (either with consent or following the appropriate Mental Capacity Act decision-making process).

This recommendation is about trying to make a stronger link between annual health checks (currently happening for around half of eligible people with learning disabilities), the health action plans that are supposed to come out of every annual health check (it’s currently not clear how many annual health checks result in meaningful health action plans), and how health action plans are used to make an actual difference to people’s lives.

The government response to this section is short, basically saying that it’s all in hand already, with their existing planning guidance to Clinical Commissioning Groups (CCGs) telling them to increase the number and proportion of annual health checks being done so it will all happen (the only action in response to this recommendation is to report progress annually). The problem with this sunny response is that we’ve been here for some time – the proportion of eligible people with learning disabilities getting annual health checks has hovered around 50% for some years (though there have been increases in the number of people with learning disabilities identified by GPs and increases in the number of people getting annual health checks). CCGs (and GP practices) have been ‘guidanced’, set targets, monitored, and the rest of the panoply of NHS England ‘project management’ techniques for some time without a visible step-change. The government response has no analysis of why this is, or why doing the same thing that hasn’t really worked will produce a radically different result.

Recommendation 4: All people with learning disabilities with two or more long-term conditions (related to either physical or mental health) should have a local, named health care coordinator.

This is a really big and important recommendation. People with learning disabilities are much more likely to have multiple health problems, starting earlier in life, than other people, and these multiple health conditions (and how they affect each other and the person’s life) are too often ignored or neglected, with massive implications for the person’s life (and death). Having someone who knows about health who really understands you and knows about your health, and who has your back, could be a really important way to cut through a lot of the crap and help people to live flourishing lives. But this recommendation will require real political will and money attached to make it happen.

I think it’s fair to say that the government response to this substantive recommendation is pretty much absent. There are 2 actions outlined in the government response to this section. The first is to disseminate the evaluation of the Named Social Worker pilot, scheduled to have already happened in July 2018 (which it has). This reminds me of writing lists of tasks to do and starting with ‘Write a list of tasks’, so you can tick it off straight away and feel better about yourself (yes, I do do this on occasion…). The Named Social Worker idea is at a relatively early pilot stage (it has been piloted in 9 areas so far) and part of the idea is for the social worker to help to co-ordinate support, although a bigger part of the role is to act as the guarantor of the person’s human rights. It’s really hard to assume that this role is the same as, is consistent with, or will work well with people with multiple health issues as a health care co-ordinator.

The second action is to commission a ‘rapid review’ of ‘best practice in care-coordination / key working for people with a learning disability, focused on health and wellbeing, to inform guidance for the NHS on care-co-ordination’, to be completed by March 2019. Two things here, for me. First, as well as identifying best practice, it is crucial for these kinds of reviews to try and identify what it would take to get effective health co-ordination happening for everyone, and what stands in the way of that. When health, social care and education services are routinely ignoring the law (just look at the Mental Capacity Act, which we’ll come to in a bit), the approach of finding some examples of best practice and sharing them in ‘guidance’ just doesn’t begin to touch the scale of the discrimination that people with learning disabilities and their families experience. The second thing is that the only action is to commission the paid review – even writing the guidance (let alone doing what would be needed to make it happen) isn’t an action.

Recommendation 5: Providers should clearly identify people requiring the provision of reasonable adjustments, record the adjustments that are required, and regularly audit their provision.

The duty on public services to make ‘reasonable adjustments’ has been part of equality law since 2010 – the idea being that routine health (and other) services may not work very well for certain groups of people (including people with learning disabilities), so they have a duty to provide their services differently so that everyone can access an equally effective health service. This is a big issue – it’s now 8 years since the law came into effect and we know that many health services are not providing the reasonable adjustments needed for people with learning disabilities to get good access to good healthcare.

There are three parts to this recommendation, and the government is on safer ground with the first two parts about identifying people requiring reasonable adjustments and recording the adjustments that are required. As I’ve already mentioned, ongoing work about ‘flagging’ reasonable adjustments is highly relevant here, and the 3 actions in the government response are all about the familiar reporting progress and producing ‘guidance’. These are useful as far as they go, but actions around seeing how widely (and in what circumstances) they are actually used, if they make a difference to people’s healthcare, and what happens if they’re not being used would be useful.

The government response has little to say about the third part of the recommendation, about auditing reasonable adjustments, beyond generalities that the CQC inspection process sort of does this already. Although it should be pretty fundamental for a health service to regularly audit what it’s doing in terms of reasonable adjustments (and they are all supposed to be doing it already), we know that many NHS Trusts don’t seem to be doing this. Why not, and what happens to NHS Trusts who don’t?

Recommendation 6: Mandatory learning disability awareness training should be provided to all staff, delivered in conjunction with people with learning disabilities and their families.

The government response to this recommendation seems to have gained the most positive press coverage, suggesting that the government will introduce mandatory training for staff, as Paula McGowan has so effectively campaigned for. What has the government actually committed itself to?
For me, elements of the recommendation itself are not totally clear. I am not sure what ‘learning disability awareness’ training is, what it entails, and the relative merits of awareness versus (or in combination with) other types of training. The government response in this section does not add clarity - this section begins with the following (underlined, no less) statement: “We agree that health and care staff should have access to learning disability awareness training. We will consult by the end of March 2019 on options for delivering this to staff.”

This sounds like it promises much but the detail is sketchy, although there are 7 actions in this section and much more than in other sections on monitoring and auditing what’s actually happening.

The government response mentions that there is already a statutory duty for provide training for staff to do their jobs properly, and draws attention to the already existing Learning Disability Core Skills and Education Training Framework. This Framework was published in 2016, and I’m not sure how much of an impact it has had on how staff are trained and educated (or whether it results in staff doing their jobs well). It has three levels (or Tiers): Tier 1 is about awareness for any staff person who might have any occasional contact with a person with learning disabilities, then Tiers 2 and 3 are for staff spending more of their time working directly with people with learning disabilities.

A lot of the actions in the government response relate to this Framework, particularly the most basic Tier 1 level of training, and they feel a little scattershot. So one action is for DHSC to ‘remind’ organisations of their responsibilities when it comes to training (to be done this month).  Health Education England are supposed to develop and publish a Tier 1 ‘training offer’ at some unspecified point in 2019 (if the framework has been out since 2016 why hasn’t this been done already?) and to audit learning disability training – by June 2021! I’ve no idea why Health Education England have the luxury of such glacial timelines – is it because DHSC have written round begging for different organisations to say what they might be able to do rather developing a coherent strategy and pushing organisations to do what needs to be done? Contrast with Skills for Care, who are supposed to produce a “comprehensive skills and training audit of the social care workforce based on the learning disability core skills framework” by March 2019.

The other big action in this section is that the government, “in conjunction with partners, will complete a consultation on proposals for mandatory learning disability awareness training” by March 2019 (another action is that once mandatory training is introduced its uptake (but not, apparently, its effectiveness) will be monitored by the CQC as part of its inspection regime.

So overall, this sounds like there will be some form of mandatory ‘awareness’ training, for “relevant” staff, and that the government will “strongly recommend” (but not require?) people with learning disabilities to be part of this awareness training.

This is more ‘action’ than we have seen in response to other recommendations in the LeDeR report, but I think this part of the government response really suffers from a lack of analysis of why different groups of staff can behave so badly, and what is needed to radically change this. Is an awareness deficit really at the root of why some staff treat some people with learning disabilities so appallingly? What about directly tackling the discrimination, stigma and lack of human worth ascribed by some staff to the health and lives of people with learning disabilities? What does the evidence say about how to achieve that? What about getting into the heart of basic training for doctors, nurses, applied health professionals, social workers, managers, commissioners and other staff groups – what do we know about how to do that so it makes a real and lasting difference? What about the environments people are working in – these surely make a difference? All these issues go unacknowledged as issues at all, let alone issues that need analysis, proportionate action, necessary resources, and political will.


Recommendation 7: There should be a national focus on pneumonia and sepsis in people with learning disabilities, to raise awareness about their prevention, identification and early treatment.

It has been well known for some time that people with learning disabilities are much more likely to die of pneumonia, particularly aspiration pneumonia related to problems with eating and drinking, than other people. The importance of sepsis as a cause of people with learning disabilities dying needless deaths has emerged more recently.

The government response outlines the ‘learning into action’ group that NHS England has already set up (although how the learning will translate into action is unclear), with 1 of the 3 actions in this section being to report on progress to DHSC. One of the other actions mentions work that is already going on to improve the uptake of flu vaccines amongst people with learning disabilities (although it doesn’t mention the importance of improving the uptake of free flu vaccinations amongst paid carers and family members supporting people with learning disabilities).

The final action point concerns ‘NHS RightCare’, which is another of these mysterious quangoids that I struggle to make sense of (see what you make of it here). This organisation is going to develop ‘Pathways’ relating to dysphagia (problems with swallowing), epilepsy, sepsis and constipation. NHS Rightcare has so far published one ‘Pathway’ on making reasonable adjustments to services supporting people with diabetes and learning disabilities. The ‘Pathway’ summarises the evidence, makes the case why supporting people effectively is a good thing, and makes some suggestions for useful things to do – it is basically the same kind of guidance that other organisations have produced. Like pretty much everything else in the government response, there are no ‘teeth’ to these Pathways – how will we know if they are being used, if they make any difference, and the consequences for services if they are not using them?

Recommendation 8: Local services strengthen their governance in relation to adherence to the MCA, and provide training and audit of compliance ‘on the ground’ so that professionals fully appreciate the requirements of the Act in relation to their own role.

What to say about the Mental Capacity Act (MCA), now into its teenage years but still frequently ignored and abused where people with learning disabilities (and lots of other people too) are concerned? This recommendation focuses on the crucial importance of local governance, training, and the auditing of compliance as part of a strategy to make adherence to the MCA (after all, it is the law) routine and less a function of the personal preference of any given professional. The government response states “We acknowledge that more needs to be done to embed the principles of the MCA in everyday practice.”

The government response mentions a range of general initiatives that are happening relating to the MCA, with 3 specific actions mentioned in this section (1 of these being the ubiquitous reporting of progress). A more substantive action is for “NHS England to distribute additional best practice guidance on the MCA, learning disabilities and urgent care situations”, by November 2018. Again, this will no doubt be useful as far as it goes, but I am really not convinced that the root of un/misuse of the MCA is principally due to a deficit of knowledge that will be radically transformed by best practice guidance.

The other action in this section is for the CQC, “to further develop inspection expertise to assess the quality of MCA application and practice”. This may be useful, but CQC inspection reports already often mention practice in relation to MCA, with much of it reporting poor practice. The bigger issue is the (lack of) consequence of non-compliance with the MCA – if the government took a lead on requiring the CQC to record a ‘requires improvement’ rating for any service found not to be complying with the MCA I think we’d see bigger changes, much faster.

Recommendation 9: A strategic approach be taken nationally for training of those conducting mortality reviews or investigations, with a core module about the principles of undertaking reviews or investigations, and additional tailored modules for the different mortality review or investigation methodologies.

The government response to this specific recommendation is short, with the only action being for Health Education England to produce an e-learning package (to be done by August 2018…). There are also more general mentions of the Healthcare Safety Investigations Branch (a pet project of Jeremy Hunt) and the CQC Learning candour and accountability report, both of which have ended up paying very attention to the deaths of people with learning disabilities.

Oversight
The end of the government response says that DHSC and NHS England will set up a LeDeR oversight group, including people with learning disabilities and family members, to monitor the actions. According to the response, “This group will meet regularly to monitor cross- system progress against recommendations and agreed actions, and can link as necessary with the LeDeR independent advisory group, and provide advice to Ministers and policy leads.” I personally find this immeasurably frustrating, for the following reasons:

  • There isn’t one already? How long has the LeDeR project been going?
  • As the actions are described, this oversight group won’t have most of the information it will need to really understand what’s going on or whether the actions are making a difference.
  • DHSC in the past few years has systematically dismantled structures to help it think strategically about how to support people with learning disabilities, including the Learning Disability Programme Board, the National Forums of self-advocates and family members, and the Learning Disability Self-Assessment Framework. An ‘oversight group’ related to one specific programme is not a substitute.
  • Reducing the premature and preventable deaths of people with learning disabilities is so much bigger an issue than DHSC, substantially outsourcing its responsibilities to NHS England, can do anything meaningful about. Where’s education, social care for children and for adults, public health, housing, criminal justice, benefits systems, in all of this?

Elephants by Jackson Pollock
As far as I know, Jackson Pollock never called one of his paintings ‘Elephants’ (although elephants have painted abstract expressionist artworks). I want to finish this massive blogpost (well done for making it this far) by talking about two things – the scattershot nature of this government response, and what is absent from it.

First things first – given that this is a response to a specific set of recommendations, it is unfair to expect a broad strategic sweep that tackles everything. But – I was hoping for a clear analysis of what is going wrong and why, for actions to follow from this analysis, and for the effectiveness or otherwise of these actions to be monitored so the actions can be changed accordingly. Instead it is a fairly typical round-up of things that are mainly already happening, with little sense of these and new actions adding up to a coherent strategy working to a clearly specified timetable. Including some things that are already happening makes sense (it would be worrying if there wasn’t anything already happening), but the inclusion of some actions that are not relevant, or working to timelines that don’t match each other, reduces my confidence that this scattershot approach will result in radical change.

Second things second, what are the absent elephants stalking this government response? Some of them that occurred to me reading through it are:

  1. I don’t remember seeing any actions or commitments about the longer-term future of the LeDeR programme, or what will replace it.
  2. I don’t remember seeing any actions or commitments to make participation in the LeDeR programme mandatory (it is still officially voluntary), or actions to make these deaths a core part of what health services do rather than an add-on that can be indefinitely postponed.
  3. There is nothing about the discrimination and stigma that is so obvious and central a part of what is going on in the premature deaths of so many people with learning disabilities. Without looking this in the face, and understanding what you need to do to address it, are we really going to see the radical change needed?
  4. There is no analysis of what is wrong now, no thinking on the basis of this analysis what needs to happen, and no thought about how to effect really significant change. What is the ‘theory of change’ or ‘logic model’ here? How is radical change expected to happen as a result?
  5. There is a whole world beyond health services (and beyond NHS England) that is crucial in supporting people with learning disabilities to flourish and to help prevent people dying before their time. Where is this world in this government response – nowhere.
  6. There is no sense of this government response being part of, or consistent with, a government strategy (as opposed to an NHS England strategy). The last national strategy about people with learning disabilities was a refresh of Valuing People designed to go from 2009 to 2012 (perhaps we should call it Valuing People Then rather than Valuing People Now). There has been nothing since, and the absence of a national strategy is really damaging.
  7. There is also no mention at all of the much-vaunted NHS England Long-Term Plan, where people with learning disabilities are supposed to be one of the clinical priorities for the next 10 years. How is this lack of connection possible, unless this government response is really a disposable document to say a commitment has been met and to gather a day’s positive headlines?
  8. There is nothing in this government response about co-production, or people with learning disabilities and families having any meaningful power – for me an essential component of making significant, meaningful change.
  9. And there’s no commitment to the meaningful amount of money and other resources required – if you tell people over and over again to do six impossible things before breakfast (without any actual breakfast in view) they will eventually stop listening to you.
There’s one last thing I want to say. I hate writing these kinds of blogposts. They’re not blogposts really – they’re too long and too tedious for that. I hate being ‘that person’ who nitpicks and isn’t ‘welcoming’ enough. But for me the detail (or the lack of detail) is where you need to look, and I can’t think of another way to examine and scrutinise these kinds of document. I hope it’s useful for someone, somewhere. If it’s not, I’ll gladly stop writing them!