Friday, 9 September 2016

Through the round window

This week, for the first time the MyNHS website published some information on services for people with learning disabilities in England, broken down to the level of individual Clinical Commissioning Groups (CCGs). The relevant webpage is here – although I found it quite slow to load, it did work for me in the end.

Although knowledge is not necessarily power, any steps towards transparency are to be welcomed, and although I don’t know this I guess the hand of Dominic Slowie behind it. Dominic will be much missed as National Clinical Director for Learning Disabilities. In this blogpost I simply want to describe what information has been published online to help people understand what is (and isn’t) there when looking up their local CCG area.

There are two types of information published online here (a much wider set of information about people with learning disabilities broken down by local authority area in England is available here).

The first is the number of people with learning disabilities in specialist inpatient services commissioned by the CCG. This is written as the number of people in inpatient services per million total adult population registered with GPs in the local area, so that areas with very different population sizes can be compared. Overall, the median number of people in inpatient services per million adult population (if you ordered the 209 CCGs from lowest to highest, the median is the number reported by the CCG in the middle) was 62 people in inpatient services per million adult population. As the graph below hopefully shows, the variation is huge. Apparently, if you’re a person with learning disabilities in Swindon or Wiltshire (where 16 people with learning disabilities per million adult population are in specialist inpatient services) you are nearly six times less likely to be put into an inpatient service than if you live across Cumbria and the North East (92 people per million).

Before marching to your local CCG offices with pitchforks (if you can find them - they’re quite often hidden in business parks nowadays) there are a couple of caveats to bear in mind about this information. The first is that more than half of the people with learning disabilities in inpatient services (and attributed in the online information to individual CCGs) are not actually commissioned by CCGs. The latest NHS Digital Assuring Transformationdata for July 2016 reports that 1,175 people with learning disabilities (47%) were in inpatient services commissioned by CCGs and 1,345 people (53%) were in inpatient services commissioned by NHS England ‘specialist hubs’ (these are regional ‘specialist’ commissioners who tend to commission more secure and forensic services). So while I’m sure there are close working relationships between CCGs and these specialist hubs, it’s important that NHS England share in this transparency. This level of detail is available (for each CCG area, how many people with learning disabilities are in inpatient services commissioned by CCGs and by these hubs) (Table 10 here, if you’re interested) but is not in the online information.

A second caveat is that information is set against individual CCGs when it has been provided collectively. For example, all the CCGs across Cumbria and the North East report the same number of people per million (92, the highest numbers in the dataset) – presumably some individual CCGs have lower numbers and some have even higher numbers. Finally, given the pressure CCGs are under from NHS England to cut inpatient service numbers, it’s important to bear in mind the ‘Daisy Unit’ phenomenon. The Daisy Unit is a newly built 9-bed unit in the grounds of a psychiatric hospital, for people with ‘complex’ learning disabilities to ‘receive specialised services’. But apparently it’s not an inpatient unit, it’s a ‘specialist residential home’. Coincidentally it’s been commissioned by Wiltshire CCG, an area with the joint lowest inpatient numbers in the country according to this online information.

The second type of information reported online is the percentage of people with learning disabilities identified in GP registers who had an annual health check. The median figure for this was 46.5%, so just less than half of people identified as a person with learning disabilities with their GP got an annual health check in the ‘average’ CCG. Again, the graph below shows huge variation between CCGs. Apparently, if you live in the area of Coastal West Sussex CCG (13%), you are 6.5 times less likely to have had an annual health check than if you live in the area of Eastern Cheshire (85%).

Again, there are a few things to bear in mind when trying to make sense of your local area. First, in fully 19 CCGs (9.1% of the total number of CCGs), their information was so bad that a percentage could not be calculated. Second, in the year reported, the age range of people of learning disabilities eligible for an annual health check changed from 18+ years to 14+ years, so some areas may not have been very well prepared for this. Third, if a local area is better at actively finding and registering people with learning disabilities on GP registers their percentage is likely to go down (as the number ‘under the line’ gets bigger). The online information does report the total number of people with learning disabilities registered with GPs so it’s worth looking at that as well as the overall percentage.

One thing I haven’t mentioned is the first column in the webpage, a ‘panel assessment’ of CCGs when it comes to services for people with learning disabilities. The headline figures are that 192 CCGs (91.9%) were rated as ‘needs improvement’, 16 CCGs (7.7%) were rated as ‘performing well’, and one CCG (0.5%) was rated as ‘greatest need for improvement’. Because the panel only had two bits of information to go on, their rating system seems quite straightforward – if a CCG was reported as having less than 20 people with learning disabilities per million in inpatient services (3 CCGs) OR if a CCG was reported as hitting 70% of more of people with learning disabilities getting an annual health check (13 CCGs) they were rated as ‘performing well’. As long as you’re doing well on one of these indicators, you can be doing badly on the other one and still be ‘performing well’. With only two bits of information, I’m not sure how useful this panel rating is, to be honest.

Hopefully this blogpost is useful if you’re interested in looking up your local CCG. Whether these first steps towards transparency are really designed to improve the accountability of CCGs to their local populations, well that’s another question.

Saturday, 9 July 2016

Hobnob's Choice: The right of people with learning disabilities to live healthy lives

We know that people with learning disabilities in England (and in other countries around the world) die, on average, some 15 to 20 years younger than people without learning disabilities. We know that people with learning disabilities are more likely to experience a wide range of health problems than other people (a list here?), are more likely to experience multiple health problems, are more likely to be prescribed antipsychotics and multiple medications, and are more likely to go to emergency hospital departments with health problems that, if well managed, shouldn’t need emergency hospital care.

We also know that people with learning disabilities are more likely than other people to be overweight or obese, and that this difference emerges in childhood. We know that people with learning disabilities are less likely than other people to live healthy lifestyles in terms of things like diet and physical activity. The ‘hidden majority’ of adults with learning disabilities are more likely to drink alcohol and smoke compared to other people, probably starting in the teenage years.

We know that people with learning disabilities throughout their lives are more likely to experience a whole range of adversities that are linked to poor health: poverty, hardship, poor housing, unemployment, discrimination, crime, social isolation, restricted social and intimate relationships, and a wide range of adverse life events.

The poorer health and early death of so many people with learning disabilities is not inevitable. A learning disability is not in itself a health condition. Much of the difference in health between people with and without learning disabilities can be accounted for by the greater adversities experienced by people with learning disabilities. This (along with poorer treatment by health services) is what makes the poorer health experienced by people with learning disabilities a health inequity, an example of “differences in health that are unnecessary, avoidable, unfair and unjust” (Whitehead, 1992).

Services that support people with learning disabilities, particularly residential and housing social care services but other services too, are really important in the lives of those people with learning disabilities that can get access to them. How they support people is going to have a massive influence on people’s health. So, from the evidence in front of us [Health Charter?], why don’t social care services do all they can to support people to live healthy lives, with reasonably healthy diets and a reasonably active and fun life?

There are many potential reasons for this, but in this blog I want to talk about one reason often given by professionals and support staff to justify unhealthy lifestyles on the part of the people they’re supporting, choice. The argument is straightforward – like anyone else, people with learning disabilities have the right to choose the food they eat, the drinks they drink, and what they do (or don’t do) with their time. The role of services is not to constraint people’s right to choose.
Given that the Mental Capacity Act legally enshrines the right of people with capacity to make unwise decisions, are attempts to address the unhealthy lifestyles of people with learning disabilities inevitably in conflict with this right? In this blog I’m going to try and argue no.

First, staff appeals to the right to choose unhealthy lifestyles sit quite oddly with what many services routinely do. Staff in residential and housing support services routinely constrain people’s right to choose in many other areas of their lives, either explicitly via risk assessments or implicitly via staff rotas that constrain where, when (or if?) people go out, whether people ever have sex, or whether they can attend a place of worship if they choose. Services don’t seem concerned that they impose restrictions on other unhealthy behaviours: people with learning disabilities in residential services are less likely to drink alcohol or smoke tobacco, for example. Why is the right to sit on the sofa and eat doughnuts sacrosanct in the face of such routine constriction in other areas of people’s lives?

Second, appeals to choice are typically made to justify someone’s choice to engage in unhealthy behaviour. I don’t know I’ve ever heard this appeal to choice used to justify a person’s choice to engage in healthy behaviour. What if someone was watching the London Marathon on TV and expressed the choice that they wanted to take up running? Would this expression of choice be heard, followed up and supported as a fundamental priority? Choice (particularly from a piffling range of unhealthy options) is not self-determination - being more in control of the options available.

Third, appeals to choice assume that a person’s choices at a particular time and place are somehow ‘natural’, and that trying to change anything with the possible consequence of improving a person’s lifestyle is imposing artificial constraints on these ‘natural’ choices. An obvious point is that no-one, ever, is making choices within a free-floating void of infinite possibilities. People’s life histories up to that point, who is around the person, where people live, how much money they have at their disposal, their health (and the medication they are taking), and the weight of routines (among many other things) all have an influence on the bandwidth of options that are seen as possible, which among these options are seen as desirable, and which (if any) of these options actually happen.

What is the bandwidth within which many people with learning disabilities are likely to be making choices about health behaviours such as diet and physical activity? Some questions (and this is no means an exhaustive list):
·        What are people’s life histories when it comes to health and healthy behaviours? What did people grow up with in terms of what they tended to eat, and what they saw and were encouraged (or discouraged) to do in terms of physical activity, for example?
·        What is available to eat and drink where people are living? (money is obviously a big factor here) Do people have the chance to try different things? What skills do people (and those supporting them) have in terms of preparing fresh food and drinks? What do people see those around them eating and drinking (and smoking?)?
·        What options do people think they are choosing from?
·        Are people confident in their ability to follow through on a choice they want to make?
·        What support are people getting to actually do physical activities that they might find fun? (no matter where people are starting from)
·        Are people on medications that make a difference to their physical health risks (for example antipsychotics and weight gain) or their capacity to make decisions (again, antipsychotics)?
·        What histories do people have of being bullied or discriminated against, and does a (often very real and present) fear of further discrimination have an impact on what people are prepared to do (and where they’re prepared to do it)?
·        How much money do people have at their disposal? How much money does the service have at its disposal?
·        Where are people living? Where are the nearest shops and what kind of food and drink do they sell? Are shops selling fresh food accessible? How do people get to the shops? Or is food delivered to the door via internet shopping? Who gets to decide which food and drink is bought?
·        Are local neighbourhoods seen as hostile? Are they pleasant, attractive places to be in?
·        What are different ways that people can imagine to be physically active in a way they might enjoy, and do people have the gear (clothing? footwear?), places and people to do these activities?
·        How do people get around beyond their house? By car? Public transport? Walking? Cycling?
·        What ‘activities’ are part of the routine, and are activities beyond the routine encouraged and supported? Does a trip in the car for a treat at McDonalds or the local Costa cafĂ© (with a ‘treat’ of a cake every time) count as an activity?

I know in my life all these have been crucial in shaping my health and the choices I make (in some ways healthy, in other ways unhealthy). I have a lot of control over these choices, but my life history (for example my parents aren’t smokers or big drinkers, but they are overweight and like cakes a little too much), my circumstances (do I have the time to cook tea from scratch or not, or am I late home from work with the kids off to do stuff in the evening) and where I live (in the Lake District, where a beautiful, safe walk is easy to get to, but I’m the token slob in a group of friends that tends towards lycra-clad extremities of exercise) all have an enduring, daily impact on the choices I make.

For me, the appeal to choice to justify unhealthy lifestyles is incoherent and largely specious. The ‘choices’ people are making are often heavily constrained to a very narrow bandwidth, in environments that come down heavily on the side of unhealthy behaviours in ways that make more healthy behaviours not only difficult but not even imaginable. Taking people’s health seriously doesn’t involve restricting choice. If anything it involves the opposite: supporting people to grow in the exercise of their self-determination, in environments that support people to try new things and take control of their lives. People still have the right to make unwise decisions in relation to their health, of course, but in a broad bandwidth of possibilities these decisions allow for people to (sometimes) choose health, rather than in effect having poor health chosen for them.

Whitehead M. (1992). The concepts and principles of equity in health. International Journal of Health Services 22; 429–445.

Monday, 6 June 2016

How very dare you!

Having been away from twitter for a week or so, I thought I’d try and catch up a bit on what’s been happening with some of the people I follow. I’m now thoroughly bemused and depressed by what I’ve read. I’m certain that I haven’t caught up all with the relevant exchanges and blogs, but it seems that a segment on Victoria Derbyshire Live last Monday linked to the 5th anniversary of the Panorama undercover programme about Winterbourne View has been followed by a lot of debate (some of it quite vituperative), largely directed at @GeorgeJulian (and by extension the #JusticeforLB campaign) on the basis of George asking some questions of the Mencap representative @dan_scorer during the TV segment.

There are a few things about how this debate has played out that confuse me, to say the least, and this blog tries to set out some of the basis for this confusion. Upfront, I do want to say that any charity worthy of the appellation should be welcoming the kind of questions George raised with open arms, rather than seeing them as a threat to their corporate brand. [As an aside, the unpreparedness of Mencap to respond to these questions suggests that questioning and challenge isn’t a part of the internal culture of the organisation either, which doesn’t augur well]. I’m not sure that being late to this debate helps or hinders, to be honest, but here goes.

The first thing that struck me was the sense that asking questions about Mencap was in itself not a legitimate thing to do. It wasn’t that the questions that George asked received adequate answers  (and they are questions that are being asked about a lot of big charities, particularly those who are also big service providers); for some people it seemed to be that questioning Mencap at all was somehow to impugn their virtue or to negate/insult anything positive that they do. Personally, I’m not convinced that charity status should automatically confer a shawl of unquestionable virtue, for a number of reasons.

First, surely the example of Kids Company should be enough to make anyone want to see transparency and accountability in the charity sector, and to worry about any charity that takes on the mantle of virtue to the extent that any challenge to its operations is seen as sour-faced and illegitimate.

Second, there are inevitable (and perhaps sharpening) tensions between any charity that functions as a service as well as a campaigning organisation (and in an English context Mencap is a large provider of a wide range of services for people with learning disabilities). To what extent can any such charity bite (rather than lightly nibble) the hand that feeds it, and how do Mencap’s campaigns negotiate these tensions?

What should be the expectations of a large charity providing services for people with learning disabilities, to justify its charity status (including the ensuing tax breaks)? My personal list would include something like the following (although this list is not exhaustive, and some non-charitable service providers manage at least some of these better than Mencap):

  1. A commitment to human rights (with strong, publicly available evidence that their services are showing a commitment to this routinely, day by day).
  2.  An open, transparent culture of continuous learning to make their services the absolute best possible – to rigorously evaluate how good their services are, to be honest about where things aren’t going well, and to be curious about how to make them better. A quick look at the CQC website shows that, while most inspected Mencap services are rated as good (87, I think), a substantial number (12) require improvement and 1 service was rated inadequate. No Mencap service was rated outstanding.
  3. Evidence that people with learning disabilities and family members are central to deciding how the charity is run (including how the services are run), what the campaign priorities are, and what the goals of these campaigns are.
  4.  Public evaluation and reflection on whether the campaigns have met meaningful goals, with ongoing debate about the effectiveness of their campaigning activities and what this means for achieving meaningful change.
  5.  Supporting, taking part in and contributing resources to other campaigns and campaigning organisations led by people with learning disabilities and families.
  6.  Generally, ‘being the change you want to see’ (not Mahatma Gandhi, apparently) – for example, if you’re going to campaign about the employment of people with learning disabilities you should be an exemplar employer of people with learning disabilities yourself.
  7. Supporting people with learning disabilities and families to develop compelling new narratives and policy proposals for a comprehensive, positive alternative agenda for how people want to live their lives and to be supported in doing that.

From an outsider perspective, it is impossible to know how much Mencap are doing any of these things.

The central Mencap communications strategy appears to be really quite corporate and ‘on message’, with very little meaningful engagement with other people outside the Mencap circle. Social media statements are relentlessly cheery, with lots of openings of things, fundraising activities, repeats of Mencap campaign statements, and congratulations to Mencap services getting a ‘Good’ CQC rating. Occasionally there are calls for the government to do something (although, beyond actions that result in increased funding for the type of services that Mencap provides, these calls for action are relatively non-specific). What I haven’t seen from Mencap is anything when a Mencap service gets a CQC rating of ‘Requires Improvement’ or ‘Inadequate’, or any reflection on the potential difficulties and pitfalls in trying to run a large network of services, particularly in financially straitened circumstances, or indeed any reflection on whether trying to run a large network of services is itself an obstacle to supporting people well.

Instead, any inconvenient news about Mencap is simply ignored (Mencap are adroit users of silence as part of their communications strategy – the last week being a supreme example). If ignoral looks like it’s not working, then attempts are made to move public critique to a private realm (either via statements that are sent to people individually rather than made public, or via offered ‘private conversations’ to certain people – I was offered, and turned down, one of these, after I wrote a blog about the initial Bubb’s breakfast debacle). An alternative strategy is to deflect accountability by passing the buck to local Mencap branches (as with the involvement of a Mencap governor on the Southern Health Board of Governors, or the continued patronage of MP Stephen Crabb of his local Mencap branch).

To me, this seems like the behaviour of a controlled and controlling corporation, and it makes it hard for me to look at Mencap’s campaigning without applying a lens of corporate self-interest. If Mencap wasn’t a charity but was an independent sector service provider of similar size, would we see these campaigns as a branch of self-interested lobbying? The strapline Mencap uses for itself, “The voice of learning disability”, implies a market sensibility – are other voices of learning disability competitors to be squeezed out? (only one organisation can be ‘The Voice’, as Saturday night TV has taught us). This is quite apart from this strapline ignoring People First campaigning over many years (the recent glossy launch of ‘Learning Disability Voices’ – all service providers, including Mencap – shows the direction in which voices can apparently be stretched).

Who sets the terms of Mencap campaigns? What are these campaigns trying to achieve? How would we know if the aims of these campaigns have been achieved? The final question in particular may be impossible to definitively answer, and from my particular glass house of questionably pointfull activity I don’t wish to throw stones, but I do think it’s fair to expect public reflection, engagement and challenge on these issues. It’s hard to know about any of these quandaries from looking at the Mencap website – there is little public reflection or debate on any of these issues, and the public face of Mencap campaigns seem to follow the same corporate logic as the rest of their activities. There is also little evidence that Mencap support other campaigns which they have not initiated and do not control (such as #JusticeforLB or more recently #7daysofaction), either in terms of visibility or putting their muscle to work in support of these campaigns.

Third, a number of people have suggested that then (the 5th anniversary of the Winterbourne View Panorama programme) was the wrong time for George to ask questions about Mencap. There seemed to be a couple of issues here. One was that this apparently diverted attention from the Winterbourne View families (although 4 families signed the letter organised by Mencap, none appeared on the Victoria Live programme and I don’t know why this was, although another family member of someone who had been in an inpatient unit did appear) and the issue of inpatient units in general. Another issue was that asking questions about Mencap diverted attention from a valuable media opportunity to hold the government to account. I have a few thoughts about this:

  1. There has never been a ‘right time’ to enter into a debate with Mencap about any of these issues. Such questions about Mencap (as about a number of large charities) have been rumbling around for some time, and Mencap has never engaged with them, consistent with their corporate communications strategy above. When would have been a good time?
  2. I don’t think the ‘hook’ of the 5th anniversary of the Panorama programme was particularly significant to the government (although it should have been) – they generally seemed no more concerned than  on the 3rd or 4th anniversaries, and a range of issues concerning the scandalous mistreatment of people with learning disabilities seems to be making it into press, TV and radio less infrequently. Any political imperatives lie elsewhere (particularly with pledges Simon Stevens of NHS England made to the Commons Public Accounts Committee, for example, in my view), and a generalised call ‘to the government’ suggests campaigning is being performed without any specific aims in view.
  3. The ‘resilience’ of inpatient services in the face of policy strictures, concordats and programmes to reduce their number is grimly impressive in its way, and the #JusticeforLB and emerging #7daysofaction campaigns (see this excellent new documentary from @DimitriadiSophi ) are right to focus attention and action on this. Both campaigns are strongly of the view that inpatient services cannot be seen in isolation, however. They are the end-station of a system that does not support people and families in their aspirations, treats human rights as optional extras, and is less than indifferent to people’s early deaths. I think people generally (and need to) see more than one thing at once.

Fourth, I’m very confused by the opprobrium heaped on George for undermining the ‘unity’ of the ‘voice of learning disability’ by asking questions and expressing a different viewpoint (isn’t this exactly the ‘thought diversity’ beloved of management wonkers?). As a number of people have pointed out, such diversity is both inevitable and to be welcomed, rather than suppressed. For me, unity does not mean doing whatever Mencap says (again, the totalising ambition of being ‘the voice’). My limited reading about the processes by which ‘successful’ civil rights and other campaigns have operated included diverse groups agreeing and working together on a small number of central campaigning aims and strategies, while disagreeing about a lot of other things. If this is right (and I’m on very shaky ground here), then Mencap and other large charities would be only one of many ‘voices’ around any such table, and would be contributing their resources to rather than controlling any such campaign.

This brings me to my last point, which was raised by George in the Victoria Live discussion and has been mentioned by other people too, that people with learning disabilities were the objects of the discussion rather than active participants in it. Part of my reluctance in writing blogs like this one recently (as opposed to blogs describing information) is that they occupy space that should more properly be occupied by people with learning disabilities. I am lucky enough to have met a substantial number of people with learning disabilities who are more than ready to take on the leadership of a national campaign, developing the kind of alternative positive vision needed and making it happen in practice. What are the elements of that vision, and what should the strategies and tactics be? I don’t have a clue, and it’s not for me to say. It’s for people with learning disabilities to come together and kick some serious political butt, with others only collaborating/contributing if they are called upon.

Compared to many/most organisations involving people with learning disabilities in England, Mencap has worked very hard (through continuous fundraising) to get to a point where they have undoubted campaigning resources and muscle – for example in their connections with politicians and elements of the media. I would say that some of their campaigning has been really important in raising issues that had been (and continue to be) swept under the carpet, notably ‘Six Lives’ (death by indifference). Many (but by no means all) of their services provide good support to people with learning disabilities, and Mencap have provided invaluable support to some families (but not to others). Wouldn’t it be great if Mencap put some of that muscle at the service of emerging groups of people with learning disabilities working to take power, rather than seeking to control everything they are involved in? If they don’t, I can see politically savvy people with learning disabilities simply bypassing Mencap altogether and treating it as an establishment irrelevance. The voices of people with learning disabilities will not be denied.

Monday, 23 May 2016

The road to Fluster Gap

In her first blogpost as the new NHS England Director of Transformation – Learning Disabilities (see ), Dr Julie Higgins reported that the number of people in specialist learning disability inpatient units has started to fall, apparently from 2,795 people in March 2015 to 2,615 people in March 2016 (a reduction of 6.4%).

Obviously, this is an abiding preoccupation of the Transforming Care programme, and a question which I’ve returned to in this blog roughly every 6 months to check in on what’s happening. Is the tide really beginning to turn? Trying to answer this simple question is surprisingly difficult, for the reasons I outlined here 6 months ago ( ).

Basically, the Health and Social Care Information Centre (HSCIC) collect information at the end of every month from commissioners of these services (at the last count there were 219 possible commissioners of inpatient services in England – see ). Commissioners report how many people are in inpatient services at the end of the relevant month (and a whole host of other information about them too). However commissioners might not know about everyone at the time, so in later months’ returns they can add in information on people they didn’t know about at the time of their original report. So the number of people commissioners report can go up retrospectively (as they find out about more people admitted to inpatient services that they didn’t know about), and the number can theoretically also go down (if they find out that people have been discharged that they assumed at the time were still in an inpatient service).

As if this didn’t induce enough wobbliness in the reporting, all commissioners don’t reliably report their numbers every month. In April 2015 only 167 commissioners submitted information; by April 2016 this was 193. This might mean that the overall number of people reported to be in inpatient services goes up over time, as more commissioners provide information. It also means that as new commissioners report information for the first time (or after a gap of a few months), great wodges of retrospective information can bump up the numbers of people in inpatient services in previous months as well as in the month when they start reporting.

Given all this retrospective reporting, what (if anything) can we conclude about what’s happening to the number of people with learning disabilities in specialist inpatient units? To get some idea of this, we need to get a handle on the number of people being added by commissioners retrospectively. Without knowing this, comparing information from March 2015 (with 12 months’ worth of added retrospective information) to information from March 2016 (which just has information reported for that month without any retrospective additions) might not be very meaningful.

The graph below tries to show the retrospective extras being added on by commissioners after the first month of reporting, in three month blocks. So, the deep purple (no, I’m not going there) bars show the initial reporting of information at the end of April 2015 through to April 2016, in three-month blocks. For April 2015, it then shows how many extra people were added retrospectively 3 months later, 6 months later, 9 months later, then 12 months later. For July 2015, there is information up to 9 months later, and so on up to April 2016 where we just have the initial reporting.
[I’m hoping that this makes some sort of sense so far?]

What does this graph show?

Well, first, looking at the deepest purple bars, it looks like the initial reporting of the number of people with learning disabilities increased from April 2015 (2,445 people) to October 2015 (2,620 people), probably as the number of commissioners reporting information increased. After that (when the number of commissioners remains consistently fairly high) the number of people initially reported by commissioners drops very slightly from October 2015 (2,620 people) to April 2016 (2,565 people).

If we’ve got a stable, high number of commissioners reporting, does this mean that the initial reporting of numbers of people will more closely reflect the total number of people in inpatient services? Does this mean we can start to claim a (very gradual) drop in the number of inpatient service places for people with learning disabilities? Looking at the retrospective data, I think the answer is ‘not yet’.

In the information for April 2015, a total of 320 people have been added retrospectively, 130 in the first three months after initial reporting (and the numbers for April 2015 are not completely stable even a year on). In January 2016 (when the number of commissioners reporting was already high), 115 people were still being added by commissioners in the first three months after initial reporting, with presumably more to be added in the future.  

I think this means we can’t take the 2,565 people initially reported in April 2016 as a final figure. Based on previous numbers being reported retrospectively, even with a nearly full complement of commissioners, I think we can expect well over 100 people to be added to this total. This would put the April 2016 total (something like 2,700 people) well within 100 people of the April 2015 total of 2,765 people. 

Compared to the stated aims of Transforming Care, it feels (to steal a phrase) that we’re still waiting for the great leap forwards ( ).

PS: The sign in the photo is on a road up and out of Heversham, a village near me, which does indeed have a house called Fluster Gap at the top of the hill.

Friday, 13 May 2016

Some statistics on children in learning disability inpatient services

The 2015 Learning Disability Census

From the Learning Disability Census 2015 (weblink here ). This is run by the Health and Social Care Information Centre.

As of 30th September 2015, in total there were exactly 3,000 people in specialist learning disability inpatient services.

Total number of children aged under 18 in learning disability inpatient services:
·        2015:     165 children
           2014:     160 children
2013:     160 children

Main treatment reason for needing inpatient care:
·        Need inpatient care:                     130 children (75 mental illness; 55 behavioural treatment)
·        Does not need inpatient care:      15 children (for 5 a community placement was being sought)
·        Other:                                           20 children

Treatment plan:
·        Not  dischargeable:                         35 children
·        Active treatment plan:                    60 children
·        Working towards discharge:           55 children
·        Delayed transfer of care:                10 children

Behavioural risks (multiple risks are possible):
·        Violence/threats to others:                          105 children
·        Sexual behaviour – risk to others:               30 children
·        Sexual behaviour – risk to self:                    35 children
·        Fire setting:                                                    5 children
·        Injury to self:                                                95 children
·        Property damage:                                          85 children

DoLS not in place:            160 children

Advocacy used (multiple advocates are possible): Yes – 110 children
·        Family:                                60 children
·        Independent person:            90 children
·        IMCA:                                 20 children
·        IMHA:                                 45 children
·        Non-instructed:                   20 children

Are patient’s family involved:       Yes – 145 children

Length of stay (to date – in current unit)
·        Less than 3 months:          65 children
·        3-6 months:                       30 children
·        6 months-1 year:               35 children
·        1-2 years:                           25 children
·        2-5 years:                           10 children

Distance of unit from home post code:
·        Less than 10km: 20 children
·        10-20km:                            10 children
·        20-50km:                            25 children
·        50-100km:                          30 children
·        More than 100km:              60 children

Incidents experienced in 3 months before census:
·        Adverse experiences only (accident, physical assault, self-harm):                    55 children
·        Restrictive measures only (seclusion, physical restraint):                                  25 children
·        Both adverse experiences and restrictive measures:                                          70 children
·        No incidents:                                                                                                       55 children

Antipsychotic medication in 28 days before census:
·        None:                                                 60 children
·        Regularly prescribed:                        85 children
·        Regularly prescribed and PRN:        20 children

Rapid tranquilising medication in 28 days before census:  
·        Yes:        45 children
·        No:        120 children

Assuring Transformation data
This is also collected by/creditable to the HSCIC (see weblink here ). The latest available information is collated for the quarter January - March 2016. Nearly all commissioners provide information now, which is an improvement, but a lot of them provide information late, so the current total number of people recorded in this dataset (2,615 people) will increase as people are ‘found’ by commissioners later on.

Total number of children with learning disabilities under 18 in specialist inpatient services: 170
·        Secure forensic:                                      60 children
·        Acute learning disability:                       40 children
·        Acute generic mental illness:                 40 children
·        Other specialist:                                      10 children
·        Other:                                                      20 children

Legal status:
·        Informal:             60 children
·        MHA Part II:     100 children

Time to planned transfer from the inpatient service:
·        0-3 months:                             20 children
·        Transfer overdue:                     5 children
·        No planned transfer date:      140 children

Length of stay (to date) in current unit:
·        Up to 1 year:              125 children
·        1-5 years:                    45 children

Total length of continuous stay in specialist inpatient services:
·        Up to 1 year:              115 children

·        1-5 years:                    55 children

Sunday, 24 April 2016

One out, one in

To accompany #7daysofaction (see here for more details and stories of people’s horrendous experiences at the hands of inpatient services ), this week I’m writing a series of short blogposts looking at the statistics we have about inpatient services for people with learning disabilities in England.

This post looks at who is being ‘admitted’ to inpatient services for people with learning disabilities in England, and who is either being discharged (lovely word, not) or ‘transferred’ to another hospital of some kind. This information has only started to be collected in the Assuring Transformation dataset (see here for the latest information ). This is collected and collated monthly by the Health and Social Care Information Centre from reports by health service commissioners of inpatient services in England (Clinical Commissioning Groups and NHS England specialist commissioners), and has now been collected consistently for just over a year.

Every month commissioners report who has gone into (or moved between) inpatient services, and who has moved out of (or been moved to other) inpatient services. I’ve simply added up the monthly figures for the 13 months we have the information, from March 2015 to March 2016. Some of the numbers won’t quite add up, as the numbers are rounded up or down to the nearest 5 people, and numbers in any months less than 5 people are not reported.

First up, how many people moved into or between inpatient services from March 2015 to March 2016?

Taking people transferring across from one inpatient service to another, in total 415 people were transferred into an inpatient service from another inpatient service over these 13 months (around 32 people per month, and almost a quarter (22%) of all ‘admissions’). At least 45 people were moving to somewhere with an increased security level, at least 170 people were moving to somewhere with a decreased security level, and at least 165 people were moving to somewhere at the same level of security.

In total, 1,450 people were admitted into inpatient services from March 2015 to March 2016 (over three-quarters, 78%, of all ‘admissions’). For 1,200 people, this was their first admission to inpatient services for at least a year (and maybe their first admission to an inpatient service ever). 250 people were coming into an inpatient unit within a year of their last time in an inpatient unit.

Where are people living at the time they are admitted (or transferred) into an inpatient service? The Assuring Transformation dataset keeps a record of where people had moved from into their current inpatient service. So, of everyone living in an inpatient service in March 2016, almost a quarter (22%) of people had come from their ‘usual place of residence, just 1% of people from a ‘temporary place of residence’, and 7% of people from residential care. 14% of people had come from a ‘penal establishment’ and 2% from an ‘other hospital’ (such as a general acute hospital). Over half of people, however, had moved from another learning disability inpatient service, mostly commonly an Assessment and Treatment Unit (48%) and less commonly from a secure forensic inpatient service (5%).

Three things occur to me from this information. First, there is a lot of ‘churn’ within the inpatient service system, with people moved around between inpatient services for reasons that are not immediately obvious. Second, although up to 3,000 people with learning disabilities are in inpatient services at any one time, over the course of a year many more people with learning disabilities (around 4,000 people?) are spending some time in an inpatient unit. Third, much, much more needs to be done to support people so they don’t need to go into inpatient services in the first place. For example, is the 14% of people coming into inpatient services from penal establishments a function of tightening eligibility criteria for social care services and reduced support for people and families, and are these people likely to be coming out of inpatient services any time soon?

As well as looking at who is coming into inpatient services, we can also look at how many people have left inpatient services over the same time period (although the numbers don’t exactly match).

Over the 13 months from March 2015 to March 2016, 455 people were reported to have transferred from an inpatient setting to another hospital, principally low secure services (at least 125 people), various forms of ‘rehab’ inpatient service (at least 105 people), ‘classic’ Assessment and Treatment Units (at least 50 people), and medium secure services (at least 45 people).

Over the same time period, 1,405 people were discharged from inpatient services into ‘community settings’ (on average, 108 people every month). People were commonly moving into residential care (at least 455 people), supported housing (445 people), their family home (with support, 345 people), and independent living (130 people).

Overall, this reinforces how many people are churned around the inpatient service system. It also explains why the length of stay for people in their current community inpatient unit is much shorter than people’s total length of continuous stay in inpatient services.

So, according to the 2015 Learning Disability Census, the median length of stay for people in their current inpatient unit was 554 days (or around a year and a half) – their average length of stay (due to that pesky ‘negative skew’ of some people living inpatient units for years and years) was 1,203 days (or well over 3 years). 

People’s total length of continuous stay in inpatient services was much longer, with a median of 861 days (well over 2 years) and an average of 1,794 days (almost 5 years). At the end of September 2015, 400 people (13% of all people in inpatient units) had been continuously in inpatient units for more than 10 years – to be fair, this is a reduction from the 540 people in this position in September 2014. The graphs below (come on, I can’t do a blogpost without any graphs) show this information in more detail.

Finally, the information on discharges from inpatient services shows that people can be and are moving out from inpatient services into a range of community-based alternatives (although we must always be mindful of the Daisy Unit scenario – I am unclear whether people moving into the Daisy Unit would count as moving into community-based residential care using these categories). A wide range of individualised, community-based support options can be done for people moving out of inpatient services. Wouldn't it be great if these options were there for people earlier, so they wouldn't ever be anywhere near an inpatient unit?

Friday, 22 April 2016

Never let me go

To accompany #7daysofaction (see here for more details and heartbreaking stories ), this week I’m writing a series of short blogposts looking at the statistics we have about inpatient services for people with learning disabilities in England.

This post looks at what is included in both the annual Learning Disability Census and the monthly Assuring Transformation dataset about ‘care plans’. For me, this information is really about the assumptions that inpatient services are making about why people are there and what their prospects are for leaving again.

So, both datasets record ‘care plans’ under the following categories and sub-categories. First, there are people who ‘Need inpatient care according to the care plan’, including:
  • People who are not dischargeable at the time of the care plan
  • People who need indefinite inpatient care for behavioural needs
  • People who need indefinite inpatient care for physical needs
  • People who have an active treatment plan, but for whom a discharge plan is not in place

Second, there are people who ‘Do not need inpatient care according to care plan’, including:
  • People with a delayed transfer of care
  • People who are working towards discharge or have a discharge plan in place

The graph below shows the number of people at the end of September 2013, 2014 and 2015 who had care plans falling into these categories. What can we tell from this? Well, in 2015 over two thirds of people (68%) had inpatient service care plans indicating that they needed inpatient care, a proportion staying fairly steady from 2013 to 2015.

Within this group, however, there was a big change in 2014. In 2013, nearly half of all people in inpatient units (46%) had an ‘active treatment plan, but for whom a discharge plan was not in place’, but in 2014 this had dropped to just over a third of people (37%) and it stayed at this level in 2015. At the same time, the proportion of people deemed ‘not dischargeable’ rose from 15% of people in 2013 to 28% of people in 2014 and 2015.

Was this just an byproduct of slight changes to the definitions used for these categories in 2014, or does it reflect a general trend for more people in inpatient units to be counted as ‘undischargeable’ over time? More recent, monthly information from the Assuring Transformation dataset might give us some clues. The second graph below shows the ‘care plans’ of people in inpatient units month by month, from March 2015 to March 2016, using percentages rather than raw numbers.

Even over more recent times (so well after any one-off definitional change) the drift towards a greater proportion of people in inpatient units becoming ‘undischargeable’ over time is there, month by month. In March 2015, 21% of people in inpatient units according to this dataset were ‘undischargeable’; in March 2016 this was 26% of people (don’t ask me why this isn’t the same proportion as recorded in the 2105 Learning Disability Census – read this if you want to fall down that particular nerd rabbit hole ). This is an increase from 510 people in March 2015 to 675 people in March 2016.

In March 2015, 39% of people in inpatient services had an ‘active treatment plan, discharge plan not in place’. By March 2016 this had also increased, to 43% of people. This is an increase from 945 people in March 2015 to 1,135 people in March 2016.

Overall, the proportion of people ‘needing inpatient care’ increased from 61% of people in March 2015 to 71% of people in March 2016. What has happened in the course of a single year to lead to such an increase?

The flip side of this is the number of people who, according to their inpatient service care plans, don’t actually need to be in inpatient services at all. Overall, from the census data, this was just over a third of people in inpatient units in September 2013 (34%; 1,105 people) and just under a third of people in September 2015 (32%; 950 people). From the Assuring Transformation data, the trend is more pronounced, from 39% of people (915 people) in March 2015 to 29% of people (785 people) in March 2016.

A reduction in the number of people in inpatient services who don’t need to be there according to their (inpatient service written) care plans is to be welcomed. But when this happens at the same time as an increase in the number of people who do need to be there according to their inpatient care plans, it begins to look like a defensive reshuffling of the pack for inpatient services to justify their continued existence.

The final graph for this post shows the consequences of this for getting people out of inpatient services. It shows the percentage of people in inpatient services with a planned date for transfer (note that this doesn’t necessarily mean leaving inpatient services altogether, as this could include people being moved to a different inpatient service), from March 2015 to March 2016. The proportion of people in inpatient services with a planned date for transfer has dropped drastically in just a year, and is heading in the opposite direction to Transforming Care policy. In March 2015, half of people in inpatient services (50%; 1,200 people) had a planned date for transfer. By March 2016, this had reduced to less than a third of people (30%; 775 people).

Much has been made by inpatient service providers of people not having anywhere to move to as a reason why some people are kept in inpatient services so long. According to these statistics, they’re being a little disingenuous. At the end of March 2016, apparently only 65 people (a reduction from 85 people in March 2015) were in inpatient services because of a delayed transfer in care, with a wide range of reasons for these delays. If inpatient services were fearlessly preparing people for life outside the inpatient service, only to be blocked by nefarious local authorities, then these numbers would be much, much bigger. I’m not saying that some local authorities and others aren’t evading their responsibilities too.  I’m saying that perhaps some inpatient services aren’t trying quite as hard as they claim to get people out?