Wednesday, 8 February 2017

It's institutional disablism - deal with it

Today saw the publication of a landmark study by Australian academics Julian Trollor, Preeyaporn Srasuebkul, Han Xu and Sophie Howlett on deaths amongst a cohort of 19,362 people with learning (intellectual) disabilities in New South Wales, Australia. Their findings are in BMJ Open here, and are free to download and read. This article in the Sydney Morning Herald is also a really good summary, and there is an easy read summary here.

Their findings are depressingly familiar. The median age of death (the age at which half of all deaths had occurred) for people with learning disabilities was 54 years (55 years for boys/men; 52 years for girls/women). This was 27 years younger than the median age of death of 81 years reported for the rest of the population. Over three-quarters of the deaths of people with learning disabilities (76%) occurred before the age of 65, compared to just 18% of the deaths of other people. Adults with learning disabilities aged 20-44 were four times more likely to die than the rest of the population of the same age.

The researchers also used death certificates to investigate what had been recorded as the causes of death for people with and without learning disabilities. The most common underlying causes of death for people with learning disabilities were respiratory system illnesses (often infections; 20% of people), problems with the circulatory disease (such as strokes, 18% of people), cancers (18% of people), nervous system problems (such as epilepsy, 13% of people), and injury/poisoning (6% of people).

The researchers concluded that over a third of deaths of people with learning disabilities (38%) were potentially avoidable, meaning that health services could have done something to prevent the health problem developing and/or stop the death from happening. This compares to 17% of the deaths of the rest of the population being classed as avoidable. One shocking detail in the paper is that when they first looked at the death certificates of the people with learning disabilities, the main cause of death on the certificate had been recorded as the person’s learning disability itself on 16% of the certificates (102 out of 637 where certificates were available) – so for 49 people their main cause of death was recorded as ‘Down syndrome’. This isn’t even taking into account the 13% of people (95 people) with learning disabilities where the researchers couldn’t find any record of cause of death at all.

Why did I write that these findings are depressingly familiar? Because similar findings have been found in other countries, wherever people have looked. In England (see Chapter 3 here for a free recent summary), the median age of death for people with learning disabilities is 13-20 years younger for men and 20-26 years younger for women compared to the general population, with the gap in life expectancy not closing over time. There are consistent gaps in age of death for people with learning disabilities compared to the general population reported in the USA, Canada, Ireland and Germany, with some variation in just how yawning the gaps are.

The most common causes of death of people with learning disabilities are also similar across countries, and people with learning disabilities are more likely to die potentially avoidable deaths. For example, in England nearly half of the deaths of people with learning disabilities (49%) were avoidable, compared to just under a quarter (24%) of the deaths of the general population. The recording of a person’s learning disability as a cause of death on death certificates has also been reported in the USA and the UK.

In England, in large part due to the #JusticeforLB campaign and other campaigners, health service ‘regulators’ have begun to pay reluctant attention to the deaths of people with learning disabilities within health services, and how health services do or don’t investigate people’s deaths. The shocking report by Mazars into how Southern Health NHS Foundation Trust (the health service where LB died) determinedly and repeatedly didn’t investigate the deaths of people with learning disabilities who died in their ‘care’ laid out just how a health organisation can operate in ways to deny reality and systematically denigrate anyone who tries to bring a dose of reality to their proceedings.

One of the broader health service institutional ‘responses’ to this report was a piece of work by one of England’s health service regulators, the Care Quality Commission, looking at how health services investigated the deaths of people with learning disabilities and/or mental health issues. This resulted in the report Learning, Candour and Accountability published in December 2016. Over time I more and more have the sensation of being shocked but not surprised at these kinds of reports. The CQC summarised the main findings like this: “We weren’t able to identify any trust that demonstrated good practice across all aspects of identifying, reviewing and investigating deaths, and ensuring that learning is implemented”. More specifically:
  • “We found that families and carers often have a poor experience of reviews and investigations, and are not always treated with kindness, respect and sensitivity.”
  •  “We found inconsistency in the way organisations become aware of the deaths of people in their care, with no clear systems for a provider that identifies a death to tell commissioners or other providers involved in the person's care.”
  •  “Healthcare staff use the Serious Incident Framework to help them decide whether a review or investigation is needed. But this can mean investigations only happen if a serious incident has been reported, and the criteria for deciding to report an incident and the application of the framework both vary.”
  •  “The quality of investigations is often poor and methods set out in the Serious Incident Framework aren't applied consistently. Specialised training and support aren't given to all staff carrying out investigations. There are problems with the timeliness of investigations and confusion about standards and timelines set out in the guidance.”
  •  “There are no consistent frameworks or guidance requiring boards to keep all deaths under review, and boards only receive limited information about the deaths of people using their services. When they do receive information, they often don't challenge the data effectively. Where investigations take place, there are no consistent systems to make sure recommendations are acted on or learning is shared.”

So, despite national frameworks and guidance on investigating and reporting deaths, and a generally high national profile on candour and accountability since the Francis report into mid-Staffs, the entire health service and regulatory system operates in a way that makes the deaths of people with learning disabilities invisible and unaccountable. And these aren’t random variations in practices where there is uncertainty about what to do; they are practices heavily weighted towards the extremely shoddy end when it comes to the deaths of people with learning disabilities.

Isn’t this surely a basic, convincingly evidenced indicator of systemic institutional disablism? I’m using this phrase as analogous to the phrase ‘institutional racism’ used by Sir William McPherson in his judicial inquiry into the death of Stephen Lawrence. Institutional racism was defined in the inquiry as:

“The collective failure of an organisation to provide an appropriate and professional service to people because of their colour, culture, or ethnic origin. It can be seen or detected in processes, attitudes and behaviour which amount to discrimination through unwitting prejudice, ignorance, thoughtlessness and racist stereotyping which disadvantage minority ethnic people”.

Within the wide array of health services in England (and likely in other places too, given the international similarities in evidence concerning the health inequities experienced by people with learning disabilities), isn’t this what we’re seeing when it comes to people with learning disabilities? (I’m fairly certain similar arguments could and probably have been made with respect to other groups of people, such as people with mental health issues, other groups of disabled people, or older people with dementia). I’ve added ‘systemic’ because it’s not a single organisation, and I'm aware there are issues around the use of 'disabilities' rather than 'impairments' that need more careful thinking through:

Systemic institutional disablism is the collective failure of organisations to provide an appropriate and professional service to people because of their learning disability. It can be seen or detected in processes, attitudes and behaviour which amount to discrimination through unwitting prejudice, ignorance, thoughtlessness and stereotyping which disadvantage people with learning disabilities.

So, systemic institutional disablism isn’t only actions and behaviours that are overtly discriminatory , although as the news report of the Australian study, the Confidential Inquiry in England, and any number of the experiences of people with learning disabilities and their families show, some health professionals seemingly don’t have a problem expressing overt discrimination. Institutional discrimination can be unconscious, and can be tracked through its systematic effects on the treatment (or otherwise) of people with learning disabilities. A quick random list of evidence for systemic institutional discrimination of the health system concerning people with learning disabilities (these are for England, but there is evidence for some of these in other countries too):
  • People with learning disabilities often aren’t identified as such within mainstream hospital services, making it difficult to monitor the presence or absence of discrimination in how people are treated.
  • Although primary care general practitioners in England have been financially incentivised for some years to provide annual health checks for people with learning disabilities, only about half of people with learning disabilities actually get a health check.
  • People with learning disabilities experience lower rates of screening for all cancers compared to people without learning disabilities.
  • People with learning disabilities experience delays in the identification and treatment of health problems.
  • People with learning disabilities living in community settings are far, far more likely to be prescribed antipsychotic medication in the absence of a relevant diagnosis than people without learning disabilities.
  • People with learning disabilities are more likely than other people to experience emergency admissions to hospital for health problems such as constipation that, if well-managed, shouldn’t result in the person needing to go to hospital at all.
  • Reasonable adjustments to hospital services for people with learning disabilities are not consistently or reliably provided.
  • Despite five years of government policy, the number of people with learning disabilities in inpatient services is not reducing, and whilst in inpatient services people with learning disabilities are highly likely to be prescribed antipsychotic and tranquilising medication, and experience physical restraint, seclusion, and physical assault.
  • People with learning disabilities die much younger than other people, where a much higher proportion of their deaths are potentially avoidable.
  • Deaths of people with learning disabilities in health settings are extremely unlikely to be properly investigated.
  • People with learning disabilities are much less likely to be involved in research about effective health interventions.

Does it matter if we call this out as systemic institutional disablism? I think it does. One of the things that disappointed me about the CQC Learning, Candour and Accountability report is that it identified the issues very clearly, but couched its recommendations in terms of technical changes to systems, on the assumption that systemic poor practice is a function of professional lack of knowledge, inattention and honest confusion. In England there have also been multiple initiatives to improve various aspects of healthcare for people with learning disabilities, all operating on similar assumptions.

But I think there is something crucial missing. Professionals within health systems have had sufficient evidence for some now – ignorance and inattention can no longer be used as reasons/excuses – indeed they can be seen as further signs of institutional disablism. As can be seen from the Home Affairs Committee report into McPherson – 10 years on, the term institutional racism was resisted by many in the police and has been the cause of deep discomfort. Progress in response to the McPherson inquiry has also been patchy and uneven. But this discomfort, self-questioning, and willingness to see the systemic whole in terms of institutional disablism is urgently needed if health services are to achieve any much-vaunted step changes in how people with learning disabilities and their families are treated. Isn’t seeing the problem the first step?

Wednesday, 1 February 2017

Security blanket

In the ongoing debate about the Transforming Care programme in England, a distinction is often made between inpatient services described as Assessment and Treatment Units (ATUs) and inpatient services variously described as secure and/or forensic. The argument sometimes follows from this that Transforming Care should be focused on reducing/closing the number of ATU places (largely commissioned by CCGs), because secure/forensic inpatient services (largely commissioned by NHS England specialist commissioning teams) are always going to be needed for some people with learning disabilities and/or autism. Personally, I’m not sure such a sharp distinction is possible, desirable, represents reality, or necessarily means that we need the amount of secure/forensic inpatient services that exists today.

In this blogpost I want to describe the range of inpatient services that exist, using Assuring Transformation data collated and analysed by NHS Digital. The Assuring Transformation dataset presents ongoing monthly information about inpatient services for people with learning disabilities and/or autism, collected from health service commissioners. While I think it under-represents the total number of people with learning disabilities and/or autism using inpatient services (see here for why), it does contain a lot of valuable detail about inpatient services and the people within them. As well as describing these services, I’m also interested in any clues we can find to support the distinction between ATUs and secure/forensic services.

The first graph below shows the number of people with learning disabilities and/or autism in different types of inpatient service (as labelled in the Assuring Transformation dataset), for March 2015, December 2015, May 2016 and November 2016. In November 2016, the most common type of inpatient service was ‘secure forensic’, containing (a word I use advisedly) around half of all people within the Assuring Transformation dataset (1,725 people, 50.6%). ‘Acute learning disability’ services (in effect ATUs) contained 460 people (18.3%), followed by complex care/rehabilitation services (330 people; 13.1%). ‘Forensic rehabilitation’ services weighed in with 120 people (4.8%), 155 people (6.2%) were in ‘acute generic mental illness’ inpatient services, and a further 180 people (7.1%) were in inpatient services described as ‘other specialist’ or ‘other’. The extent to which some of these esoteric distinctions between service types is meaningful, particularly to the people placed within them, is a question there to be asked, I think.

While the overall trend is pretty flat, from March 2015 to November 2016 it looks like there are some trends over time for some specific types of inpatient service. The use of acute generic mental illness, complex care/rehabilitation, and other inpatient services seems to be increasing, while the use of forensic rehabilitation and other specialist inpatient services seems to be decreasing. Trends for the most common types of inpatient service over time, secure forensic and acute learning disability, are unclear. 

Another way of looking at the nature of inpatient services is to look at the security level of the places where people with learning disabilities and/or autism are put, as in the graph below. In November 2016, nearly half of people (1,195 people; 47.3%) in inpatient services were in ‘general’ (i.e. not secure) inpatient services, and a small number of people (50 people; 2.0%) were in PICUs (Psychiatric Intensive Care Units, which are secure). Well over another quarter of people (740 people; 29.3%) were in low secure services, 475 people (18.8%) were in medium secure units, and another relatively small number of people (65 people; 2.6%) were in high secure services.
Over the relatively short period of time reported in these statistics, the number of people in low secure services seemed to be decreasing, while the number of people in general (not secure) and medium secure services seemed to be increasing.

The next graph below shows the legal status of people with learning disabilities and/or autism in inpatient services. In November 2016, 250 people (9.9%) were in inpatient services ‘informally’, i.e. not legally detained under Section according to the Mental Health Act (MHA). Around half of people (1,720 people; 50.4%) were detained under Part II of the Mental Health Act (compulsory admission to hospital, usually for assessment and/or treatment). A further 355 people (14.1%) were detained under the more serious Part III of the Mental Health Act (but without restrictions imposed by the Ministry of Justice), and almost a quarter of people (595 people; 23.6%) were detained under Part III of the Mental Health Act with restrictions imposed by the Ministry of Justice. Part III of the Mental Health Act involves ‘patients concerned in criminal proceedings or under sentence’. Finally, a small number of people (50 people; 2.0%) were detained using other parts of the Mental Health Act.
Over time, the number of people ‘informally’ in inpatient services has decreased, while patterns for people legally detained under various sections of the Mental Health Act over time are unclear.

 So far this post has shown the types of inpatient service that people are in, their levels of security, and the legal status of people within them. All of these show a very diverse picture. Are there any clues about whether services that are more secure/forensic are clearly different from services that are less secure?

The Assuring Transformation data analysis offers a couple of hints. The first is in the graph below, which shows for November 2016 the legal status of people within inpatient services at different levels of security. If more secure/forensic services are doing the job claimed for them, we would expect most people within them to be under Part III sections. We would also expect general/low secure inpatient services not to have people under Part III sections (particularly those with Ministry of Justice restrictions), as services at this level of security shouldn’t be able to manage people with these apparent levels of ‘risk’.

The graph below does show that medium and high secure services do largely contain people sectioned under Part II and Part III of the Mental Health Act. Low secure units have a similar profile to more secure units, although the numbers of people in low secure units are greater overall (there are as many people in low secure units under Part III sections with restrictions as there are in medium and high secure units combined). Even general inpatient units, while weighted more towards people there ‘informally’ or with Part II sections, still contain substantial numbers of people with Part III sections, both without restrictions (80 people) and with restrictions (120 people).
This information certainly shows that most people under Part III sections are in general/low secure services (600 people) rather than medium/high secure services (350 people). Is this because there aren’t enough medium/high secure inpatient services and they are desperately needed, or is it because less restrictive options are possible (most importantly, outside inpatient services altogether)?

One final graph below in this graphtastic post – the security level of inpatient services by the total continuous length of time people have spent in inpatient services (including being transferred between them). While this post so far has been about the claims to specialism of secure inpatient services, this final graph speaks to the ‘assessment and treatment’ claims of non-secure ‘acute’ learning disability inpatient services. If that is what these services do, why on earth are there 350 people in general (non-)secure units (29.3% of people in general non-secure units) who have been in inpatient services for 5 or more years? Why are there a further 405 people (33.9% of people) who have been in general non-secure inpatient services for a year or more? Or, to put it another way, why are nearly half of all people who have been in inpatient services for 10 years or more (175 out of 370 people; 47.3%) in general (non-)secure inpatient services, if they represent such a terrible risk?

Overall, it really doesn’t look like the different parts of the learning disability inpatient service complex are highly specialist and set up to deal effectively with different groups of people with different problems. Looks like we need assessment and treatment of the complex inpatient service system itself – why is the challenging behaviour of this system so persistent? A first start would be to ask what functions does this system serve, and for whom? Cui bono?

Wednesday, 18 January 2017

The riddle of the model 2: Unnatural variation

This is just a quick follow-up to yesterday's post about trends in residential and nursing care for adults with learning disabilities, prompted by Steve Broach's typically perspicacious question about variations in residential and nursing care across different local authorities in England. So, here are a few bits and pieces from another look at the NHS Digital data.

First, the two big graphs below (they wouldn't fit into one, I discovered) are simply the numbers of adults with learning disabilities aged 18-64 and 65+ in residential and nursing care homes during 2015/16, by individual local authority. It's important to realise that these are numbers of people (rounded to the nearest 5), not rates of people in residential or nursing care per 100,000 population. Obviously, local authorities with bigger populations might be expected to report larger numbers of people in all types of service. [I've tried making the graphs extra large in Blogger in the home that people can expand them on their devices - if not, do shout, as they're pretty weeny].

Second, the next graph shows the same information (so on numbers of people rather than rates) broken down by region rather than local authority.

Last, the two snippets below come from the @ihal_talk publication People with Learning Disabilities in England 2015, and relates to 2013/14 information rather than 2015/16 information [conflict of interest note - I was responsible for putting this report together], although the variation would be very similar for 2015/16. This analysis of variation in usage of residential care is based on rates of placement of people in residential care homes rather than raw numbers, and shows quite extreme variation across local authorities in how much they use residential care.

Be careful what you wish for Steve!

Tuesday, 17 January 2017

The riddle of the model

The riddle of the model*

There have been a number of straws in the wind (and sometimes more than just straws) that commissioners of health and social care, aided and abetted by ‘care’ service providers, are looking for ways to move more people with learning disabilities (and disabled people generally) into residential and nursing care. This blogpost simply aims to provide some statistics on the number of adults with learning disabilities in England in residential and nursing care, and how much local authorities are spending on these types of service. I think my main conclusion is that, although residential and nursing care may be coming back, they’ve never really gone away.

In 2015/16, local authorities were funding 30,240 adults with learning disabilities in residential care services, and a further 1,815 adults with learning disabilities in nursing homes (all data in this blogpost are from NHS Digital). The graph below shows that the overall trend over time is broadly downwards (this graph includes 1,870 adults with learning disabilities in residential or nursing care transferred from NHS to local authority funding in 2011/12).

The second graph below shows the same information for adults with learning disabilities aged 18-64 years old (this doesn’t include the NHS-LA transfers, as we don’t have this information broken down into age bands). Again, there’s a downward trend over time, but in 2015/16 there were still 24,775 working age adults with learning disabilities in residential care and 1,075 people in nursing care.

The third graph below shows the same information for older adults with learning disabilities, aged 65 years or more. The picture here is different, at best flat over time (assuming the hike in 2011/12 is due to the NHS-LA transfer) and possibly increasing. The increase from 2013/14 to 2015/16 is particularly difficult to explain; the way the information was collected changed at that time point but this led to a big overall reduction in the number of adults with learning disabilities getting social care support reported in the statistics. Why this would result in an increase in the number of older people recorded as using residential or nursing care is puzzling, unless local authorities starting recording for the first time older people with learning disabilities placed in generic older people’s care homes? Overall, in 2015/16 there were 5,465 older adults with learning disabilities in residential care, and a further 740 people in nursing care.

 The fourth and final graph below shows how much localauthorities were spending on residential and nursing care for adults with learning disabilities in 2014/15 and 2015/16 (these are the first years for which spending information on older people with learning disabilities is available). In 2015/16, local authorities were spending £1.7 billion on residential care and £60 million on nursing care for adults with learning disabilities aged 18-64 years. They were also spending £246 million on residential care and £25 million on nursing care for adults with learning disabilities aged 65 years or over – a grand total of just over £2 billion per year.

From the figures above, we can work out rough unit costs for each type of care. Per person with learning disabilities per year, local authorities are paying…
·        £68,525 for residential care for adults aged 18-64 (£1,318 per week)
·        £56,093 for nursing care for adults aged 18-64 (£1,079 per week)
·        £44,922 for residential care for adults aged 65+ (£864 per week)
·        £33,243 for nursing care for adults aged 65+ (£639 per week)

Quite why older people have cheaper support needs than younger people, and specialist nursing care is apparently cheaper than residential care, is beyond me, but the reasons for a push by commissioners towards models of care for adults with learning disabilities that look like nursing care homes for older people is becoming clearer.

So, residential and nursing care has never gone away. Rates of placement in residential and nursing care are already much higher for adults with learning disabilities in England (at 67.5 adults per 100,000 adult population) than in Scotland (42.0 adults per 100,000 population) or Wales (51.2 adults per 100,000 population) (Hatton, 2017). The scale of local authorities’ continuing reliance on residential and nursing care can be summarised in these final few facts (from 2015/16 figures):

·        21.5% of all adults with learning disabilities aged 18-64 getting long-term support from their council are in residential or nursing care
·        42.1% of all adults with learning disabilities aged 65+ getting long-term support from their council are in residential or nursing care
·        19.4% of all adults with learning disabilities in residential or nursing care are aged 65+
·        39.7% of all long-term social care support expenditure on adults with learning disabilities aged 18-64 is on residential or nursing care
·        50.0% of all long-term social care support expenditure on adults with learning disabilities aged 65+ is on residential or nursing care

In the words of Sing Street (almost), I will never unravel, the riddle of the (residential and nursing care) model.

[Updated to include the sources of the data and specific links to where to find them. Many apologies to NHS Digital for not mentioning this in the first place]

* I’ve only just caught up with the excellent Irish film Sing Street, in which our not-quite-inept-enough 1980s teenage hero forms a band so that a girl he fancies will appear in the video of their first song, The Riddle Of The Model. If you haven’t seen I’d highly recommend it (a taster is here ).

Friday, 13 January 2017

How many people with learning disabilities are really in inpatient services?

I’ve wittered on in too many previous blogposts about what the statistics are telling us about the number of people with learning disabilities and/or autism in inpatient services in England, and how NHS England claims of reductions look to me somewhat premature. So, with Transforming Care Plans springing into action, is the picture finally looking brighter? (as opposed to the future being orange, which as we now know does not mean brighter except in a malfunctioning TV kind of way)

Well, in this blogpost I’m going to share statistics that lead me to think the picture is much worse than I thought. New analyses from the good people at NHS Digital (together with some old analyses from them that I shamefully missed, thank you to Tim Williams at Reading University for drawing my attention to the relevant table) strongly indicate that there are many more people with learning disabilities and/or autism using inpatient services than NHS England typically mention in their reports of progress.

Compared to five years ago, we generally now have much better information about people with learning disabilities and/or autism in inpatient services, and there are now multiple sources of relevant information. The one that NHS England regularly cites is the Assuring Transformation dataset, updated monthly by NHS Digital. This reports information provided by commissioners (CCGs and NHS England specialist commissioners) about how many people with learning disabilities and/or autism they’re paying for in inpatient services (along with lots of other information about them and the service people are getting). The Assuring Transformation dataset (with some wrinkles due to retrospective reporting) generally reports 2,600-2,800 people in inpatient services.

From 2013 to 2015, there was also the Learning Disability Census, which collected detailed information annually from inpatient service providers on how many people with learning disabilities and/or autism were in inpatient services on a particular census date.

More recently, there is the Mental Health Services Dataset (MHSDS), replacing and adding to the previous Mental Health and Learning Disabilities Dataset (MHLDDS), which provides detailed monthly information from a wide range of providers of mental health and community services.
Just before Christmas (are they not allowed holidays?), along with other analyses of the MHSDS, NHS Digital produced a report comparing data from the Assuring Transformation dataset and the MHSDS, based on figures for September 2016. 

At the end of September 2016, Assuring Transformation reported 2,600 people with learning disabilities and/or autism in inpatient services. At the same time, the MHSDS reporting 3,590 ward stays of people with learning disabilities and/or autism in mental health/learning disability inpatient services.

Why the difference? Much of it may be that many people with learning disabilities and/or autism are spending relatively short amounts of time in general mental health inpatient services, which would be picked up by mental health service providers in the MHSDS but is not picked up by commissioners in Assuring Transformation. Consistent with this, for some NHS Trusts, many more people with learning disabilities and/or autism are reported in the MHSDS dataset than the Assuring Transformation dataset (e.g. Nottinghamshire Healthcare 90 people in AT vs 315 people in MHSDS; West London Mental Health Trust 15 vs 140 people; Oxleas 25 vs 120 people; Mersey Care 155 vs 235 people; Rotherham, Doncaster & South Humber 35 vs 185 people; Kent & Medway Partnership Trust 30 vs 265 people). 

I’m more puzzled by a small number of NHS Trusts where more people with learning disabilities and/or autism are reported in the Assuring Transformation dataset that the MHSDS, for example Hertfordshire Partnership Trust (110 people in AT vs 80 people in MHSDS) and Coventry & Warwick Partnership Trust (75 people in AT vs 5 people in MHSDS).

There are similar differences in independent sector inpatient provider organisations. Some of the biggest organisations report much larger numbers of people with learning disabilities and/or autism as inpatients in the MHSDS compared to Assuring Transformation, such as Partnerships in Care (275 people in AT vs 390 people in MHSDS) and St Andrews (205 people in AT vs 305 people in MHSDS). Is this because these organisations have people with learning disabilities and/or autism in branches of their inpatient services not identified by commissioners as learning disability/autism inpatient services? 

Again, there are some organisations reporting higher numbers of people with learning disabilities and/or autism in Assuring Transformation than in MHSDS, such as the Priory Group (50 people in AT vs less than 5 people in MHSDS) and Cambian Healthcare (135 people in AT vs 30 people in MHSDS). Why are these inpatient services not counted as mental health services by these organisations (which return information for the MHSDS)?

This is just information from a single point in time, September 2016. I shamefully missed, until Tim Williams drew it to my attention, that NHS Digital did a similar analysis of Assuring Transformation data against data from the Learning Disability Census, for September 2015. In September 2015 there were 2,625 people in inpatient services according to Assuring Transformation vs 3,000 people in inpatient services according to the Census. Only 2,140 people were in both datasets, which by my calculations (excluding places commissioned by organisations outside England) means that in total there were around 3,400 people with learning disabilities in inpatient services in September 2015.

What conclusions do I draw from this?
  1. Most obviously, there are likely to be many more people with learning disabilities and/or autism using ‘specialist’/mental health inpatient services than Assuring Transformation makes visible – something like 3,500 people in inpatient services at any one time rather than the 2,600 people reported by commissioners in Assuring Transformation.
  2. Equally obviously, commissioners’ (and possibly providers’) reporting is all over the place, as evidenced by the struggles of Jenny Morris andJane Basham to get any sensible information about inpatient services from theirlocal commissioners or service providers (Norfolk & Suffolk NHS Foundation Trust report 10 people with learning disabilities and/or autism as inpatients in Assuring Transformation, but 50 in the MHSDS dataset, for example). Are these discrepancies pure cock-up or partly some form of gaming relating to meeting Transforming Care targets objectives?
  3. Some of this information suggests that many people with learning disabilities and/or autism may be using generic mental health inpatient services rather than ‘specialist’ learning disability inpatient services. This group of people seems relatively invisible to commissioners and to the NHS England Transforming Care programme, and what’s happening to them needs to be much better understood.

Thursday, 22 December 2016

The guideline must be built!

Thanks to @ShaunLintern and @SJaneBernal for sharing the new ‘Safe staffing improvement resources: learning disability services’, published by NHS Improvement on 21st December. This blogpost contains some quick first impressions based on a skim reading, mainly in the hope of bringing more people’s attention to this. The resources include an ‘improvement resource’ with appendices, and a separate rapid mixed methods systematic review conducted by the University of West London.

Before getting into the documents themselves, I must say that I have a bit of a bee in my bonnet about the phrase ‘safe staffing’ and safe staffing levels. Among many other things, #JusticeforLB showed us that there is no such thing – Connor Sparrowhawk died a preventable death in a highly staffed unit stuffed with specialists. There may well be levels of staffing below which a service can be guaranteed to be unsafe, but there is no level above which a service can be guaranteed to be safe. And in services for people with learning disabilities, for me this isn’t idle semantic pedantry – commissioners, NHS Improvement and others are always looking for easy proxy measures of ‘quality’ or ‘safety’ so they don’t have to confront the reality of people’s lives in these services.


In looking at these documents, I’m going to start with the rapid systematic review, conducted by Mafuba, Gates and Sivasubramanian – there is a reason for this that will hopefully become clear later. The first thing that struck me (and this applies throughout all the resources) is how staff-centric the review is, presumably based upon the terms set by NHS Improvement. The terms of the review are described as follows:  “The current literature review is more broadly based, regarding the interdisciplinary range of staff working in learning disability services, and needed to consider the sustainability of these staff within a framework of compassionate, safe, effective and efficient care.”

Quite a tough brief, given the state of the published evidence and the time the authors were presumably given to conduct the review. The full brief and the review largely exclude the voices of people with learning disabilities and family members – for example the review actively excluded 9 papers because they focused on the views of adults with learning disabilities (families aren’t even mentioned). This slant towards staff perspectives is exacerbated by the reviewers deciding that “…because of the dearth of empirical studies that specifically addressed the objectives of the current review, opinion papers (published in peer reviewed journals and unpublished) were included.” So the ‘evidence’ admissible to be reviewed contains large slugs of professional opinion, including professionals working in those very inpatient services that are supposed to be drastically reducing under NHS England’s Transforming Care/Building The Right Support.

Reflecting the state (as in ‘Just look at the state of your bedroom’) of the literature, the material included in the review is incredibly heterogeneous. Given there were only 37 publications included in the review, the decision to exclude 17 publications concerning social or community care seems odd, as was the decision to exclude anything published before the year 2000, which excludes a whole strand of UK research relating to staffing levels, staff behaviour and the lives of people with learning disabilities in housing services conducted mainly in the 1980s and 1990s. This strand of research clearly established that, in a range of types of residential care and supported housing for people with learning disabilities in the UK, there was no relationship between higher staff ratios and better lives for the people living within them. A higher staffing ratio was no guarantee of a more active life, more engagement in people’s local communities, or more choice (Felce & Emerson, 2005). And of course, in inpatient services higher staff ratios may be a consequence of service failure, in a self-fufilling vicious spiral (a person becomes more distressed by being put into an inpatient service, the answer is more staff to follow them around and restrain them, the person becomes more distressed as a consequence, the answer is…).

Experts by experience?

The findings are unsurprising and (initially) pithily expressed: “No empirical evidence was located that directly relate to sustainable safe staffing.”

But of course, stopping there would derail the whole machinery of guideline production. A guideline must be produced, and minor details like a complete lack of evidence upon which to base a guideline can’t be allowed to get in the way (I’ve been involved in similar processes so this is a criticism of myself as much as anyone else). What this means is that the production of these guidelines becomes a hermetically sealed jar of professional opinion, created from ‘experience’: “While there is little previous research and a lack of strong evidence in this area, many professional publications identify experience-based strategies and indicators related to safe and sustainable staffing.”

Is this a problem? After all, professionals are the experts, right? Well, particularly when it comes to inpatient services for people with learning disabilities, it’s not as simple as that.

First, inpatient services have been around for a long time, and are highly resourced with psychiatrists, clinical psychologists and others for whom research is supposed a part of the skillset. If this is the case, why isn’t there a substantial research literature already on staffing in inpatient services? 40 years ago, there were national minimum standards set for doctor : resident ratios in learning disability hospitals (1 doctor per 250 residents, 3 out of 61 big hospitals failed this standard), and for nurse : resident ratios (1 nurse per 4.4 residents, 3 hospitals failed this standard too). Now there is no equivalent data for inpatient services across England, and very little work investigating what happens in inpatient services, with what staff, with what effect in terms of the lives of people using them? Would independent sector and NHS services routinely reveal what staff (of what type, at what grades) are actually working in inpatient services day by day, or is that now in the realm of ‘commercially sensitive’ information for fear of exposing to commissioners and the public gaps between what’s being paid for and what’s actually happening?

Second, most obviously, a lot of bad stuff happens to a lot of people with learning disabilities in inpatient services, either actively at the hands of staff (seclusion, restraint, antipsychotics and rapid tranquilising medication) or through neglect/inattention (most obviously, people dying). Despite five years of national policy to close a large proportion of these inpatient services, there is little progress, partly due to the resistance of many of the professionals employed in these services, who invoke ‘complexity’ with little evidence to back them up. I’m not convinced that professionals who preside over these services should be the only voices at the table when it comes to guidance on staffing.

Good things are good things

Coming to the ‘improvement resource’ itself (finally!), I must admit to being a bit bemused. I’ve only had a quick look, but I’m struggling to identify much content that sets a clear direction. I find it useful applying  Simon Hoggart’s law of the ridiculous reverse to this stuff, “When I hear resounding stuff like this I mentally reverse it, since it's a good rule that if the opposite of something is absurd it wasn't worth saying in the first place.”

Try it on the following quotes. This one, from the introduction, invokes ‘complexity’ again – note here that this ‘complexity’ is all about fragmented service systems (which presumably someone could do something about if it’s that much a problem, rather than assuming this is a fixed feature of the landscape?):
“Sustainable safe staffing in learning disability services must take account of the complex nature of the care models and the number and skill mix of professionals and agencies involved in meeting the healthcare needs of people with a learning disability.”

“Workforce planning should be an integral part of an organisation’s strategy.”

On a quick read, the whole document is like this, expressing the view that good things should be good things, without any recognition of why services aren’t doing these good things already.

Within the resources available…

There is a very characteristic rhetorical push and pull throughout the document, that gives with one hand and takes away with the other. Take this quote from Section 2: Right Staff:
“There must be sufficient and sustainable staffing capacity and capability in learning disability settings to provide safe and effective care to patients at all times. These decisions must take account of the financial resources available, so that high-quality care can be provided now and on a sustainable basis”.

The ‘Right skills’ section starts with this statement on context:
“New models of transformed and integrated care will rely on healthcare professionals providing expert care to more people at home ‘living in the community’ alongside families, personal assistants and social care providers. Learning disability services need to respond to the increasing complexity of need. Clinical intervention should always be based on ensuring safety, minimising risks, reducing health inequalities and improving health outcomes within the resources available.”

I don’t really know where to start with this statement. Why is ‘living in the community’ in quotation marks? What are these ‘new models of transformed and integrated care’ – the vast majority of adults with learning disabilities already live with their families or in supported housing/residential care, where they should be getting some support from community teams? What are the ‘risks’ to be ‘minimised’, and what about supporting people to lead fulfilling lives?

And in the most sinister turn, always the phrase at the end that negates the rest of the sentence -  ‘…within the resources available’. What if the resources aren’t available? Who is responsible for making sure the resources are available, and what happens if they don’t? I find it alarming that a resource on safe staffing seems to imply that safe staffing is conditional on the resources being available.
A number of recommendations in the document that could be positive are also written in ways that make me worry about their consequences in a ‘within the resources available’ world. So, for me there is some attraction in the recommendation of having flexible banks of staff to support people in times of crisis without them having to be shipped off to inpatient units, but at the same time is this a route to a zero hours staff cadre who only react to crises rather than proactively support staff to reduce the chances of going into crisis in the first place?

Similarly, the ‘Right place, right time’ section is almost wholly about reducing inefficiencies and costs. It makes sense to make the experience of getting support as smooth as possible for people, but the section is framed in terms of staff productivity rather than what support will work best for people with learning disabilities. Quotes from a focus group of people with learning disabilities are included at various points in the document, but the content of the document doesn’t match what people with learning disabilities are saying they want/need.

Don’t mention the nurses

Another consistent theme throughout the resource is to not mention professional groups or professional training wherever it can be avoided, presumably with the aim of deprofessionalising the workforce to the cheapest level possible. This, from section 3 on ‘Right skills’:
“We need to build an adaptable contemporary workforce to respond to the changing world as a profession, using our resources wisely, while ensuring that careers remain attractive and accessible to all. Our ability as a profession to adapt and innovate is critical to achieving high-quality care in the right place and at the right time. By modernising, we can shape a workforce that is fit for purpose for the next decade and beyond and positively demonstrate care, outcomes and experience for those for whom we care.”

What the quote above seems to mean is a route to de-professionalisation. Given the stranglehold of some professions on the direction of services for people with learning disabilities, this might not always be a bad thing. But the ‘generic role templates’ mentioned in the resource are not reassuring, providing five templates from ‘Support Worker’ (level 3) to ‘Advanced Practitioner’ (level 7) with very long lists of largely unspecific professionally derived core competencies which do not include the core competencies of staff that people with learning disabilities and families are looking for.

This avoidance reaches some sort of peak in the discussion of liaison roles. There is some consistent evidence that specialist learning disabilities liaison nurses, in both acute general hospitals and primary care settings, have a positive impact on the healthcare provided to people with learning disabilities. However, the resource stops short of any requirements or even strong recommendations with respect to liaison nurses, and the document itself studiously calls them liaison practitioners, avoiding any mention that they are overwhelmingly nurses:
“Commissioners and workforce planners should consider the importance of providing these posts in a range of services including primary healthcare, acute physical healthcare, mental healthcare and forensic/prison healthcare.”

In the ‘right staff’ section, the document says this:
“It is predicted that there will not be enough learning disability nurses and other professionals with experience of learning disability in the future. NHS organisations must promote this career choice and closely monitor those entering graduate placements as well as considering alternative routes to qualification.”

There aren’t enough now, and the number of learningdisability nurses in the NHS has been plummeting in recent years. No mention of those publicly available facts – who are these ‘other professionals’ going to be in the future?

Bizarrely, the section on learning disability inpatient services doesn’t talk about staffing at all, simply restating other documents’ recommendations about the number of inpatient places ‘needed’.

How will they know?

The final major section of the resource concerns the ‘Safe staffing dashboard’, asking crucial questions about how to check that services for people with learning disabilities are ‘safe’ and what to do with that information. My heart sank at the ‘dashboard’ word though, heavily conditioned by my reading of years’ worth of Southern Health Board papers for #JusticeforLB. These Board papers had dashboards a gogo, some of them measuring (or mismeasuring) exactly the proxy indicators for ‘safe staffing’ recommended by NHS Improvement here. Southern Health said they were doing all the walk-rounds and other ‘assurance’ practices presented here, and yet we know from the Mazars report how the practices of Southern Health were the very opposite of ‘safe’.

Below is the list of ‘measures that matter’ (yes, the Draft watermark is on the final publicly available version) – are these really going to get to the bottom of unsafe staff practices when the management are determined to look the other way?

And what are NHS Improvement going to do about it? For some years, NHS Improvement have had a good set of six questions about reasonable adjustments to health services for people with learning disabilities. Every 3 months, all NHS Foundation Trusts report to NHS Improvement if they’re meeting all six of the criteria set by these questions. The last time any data were made available (through a Parliamentary question – NHS Improvement do not publish these returns) every single NHS Foundation Trust reported that they were compliant with all six criteria – which is a patent nonsense. Do NHS Improvement check? Not as far as I can see. They are no doubt ‘assured’. The ongoing train wreck of NHS Improvement’s role in Southern Health, not to mention how they ‘handled’ the Mazars report, gives me precious little confidence that they will be fearless champions for patient safety. They will be much more interested in the finances, and use this guideline as another stick with which to beat NHS Trusts.

What does it all mean?

I’ve only had a skim read and I’m probably being a little unfair. One thing that worries me is that from a near complete lack of evidence, there is now a ‘thing’, an ‘improvement resource’, which will assume a reality far beyond its foundations. There are consistent themes of deprofessionalising the workforce, under the threatening shadow of ‘within the resources available’, on the hermetically sealed basis of professional ‘expertise’ in the very services that government policy says should be closing. There is no firm guidance here at all, with a shrugging of the shoulders about the dangerously fragmented service systems within which people live and staff work. The world of people with learning disabilities shrinks to one of being protected. And firm ideas about how to find out about safe/unsafe staffing and governance are there none.

So beyond the fact that there has to be a guideline, I’m struggling to see what impact this ‘improvement resource’ will have. Sorry – I think I need a mince pie.


Felce D & Emerson E (2005). Community living: Costs, outcomes, and economies of scale: Findings from UK research. In R.J. Stancliffe & K.C. Lakin (eds.), Costs and outcomes of community services for people with intellectual disabilities (pp. 45-62). Baltimore: Brookes.

Monday, 28 November 2016

Housing benefit?

A week ago (and many thanks to Donna Glover for pointing me to this) the Government began an open consultation (responses in by 13thFebruary folks) on the future of funding for supported housing across England,Wales and Scotland.

This is a massive issue, particularly in terms of how much housing benefit goes into supported housing landlords’ coffers when there is a serious shortage of affordable housing for rent.
As part of the consultation, the government has published an evidence review conducted by Ipsos Mori, Imogen Blood & Associates, and the Housing and Support Partnership, using a mixture of official statistics, datasets, surveys, and extrapolation 

Although it’s somewhat ticklish territory given the scale of the cuts being scythed from public funding to support for people with learning disabilities, it’s long been my contention that there is still a lot of public money being spent to institutionalise people with learning disabilities rather than to really support people to live the lives they want. And a big chunk of money I haven’t known about is housing benefit – a chunk of money that has recently probably been getting bigger as local authorities try and shunt some of their social care accommodation costs on to housing benefit by re-registering residential care as supported living.

Although there is in this blog my usual dose of finger in the air calculation, so extreme caution is needed about this stuff, the evidence review gives us some basic figures to work on. So – here we go…

The evidence review says that there are 38,500 working age adults with learning disabilities in England (i.e. aged 18-64 years) in some form of supported housing. This is almost a quarter (24%) of all working age adults in England in supported housing. Of these 38,500 people, most of the supported housing is provided by housing associations (24,500 people), followed by charities (5,500 people) and local authorities (2,000) – ‘other’ (either private landlords or housing where the commissioners don’t know who the landlord is because the housing and support is so enmeshed) accounts for 6,500 people. This doesn’t quite add up to the amounts reported by local authorities in national statistics but anyway, let’s press on…

Information from private rented providers in England suggest that, on average, people with learning disabilities in supported housing are paying £104 per week in rent and £59 per week in service charges. If there are 38,500 people in supported housing, this adds up to a grand total of £208.2 million per year in rent and £118.1 million per year in service charges for people with learning disabilities. If housing benefit is paying for this, then this would add up to £326.3 million in housing benefit for supported housing for people with learning disabilities.

The evidence review also asked as part of their survey how much local authorities in England were funding for the support elements of supported housing over and above rent and service charges, and they came up with a total figure of £640 million per year for people with learning disabilities (equivalent to £320 per person per week for support).

This is a very quick blogpost just really to alert people to the report and the consultation so I haven’t had time to digest it, but some very quick thoughts:

  1. For working age people with learning disabilities, this suggests that almost a billion pounds a year (£966.3 million) is spent on supported housing, with around a third of this coming from housing benefit.
  2. Even adding up the rent, service charge and support costs, supported living is still considerably cheaper to the public purse at £483 per person per week than residential care for working age adults with learning disabilities at £1,336 per person per week.
  3. Following on from point 2), Rochdale and other local authorities planning re-institutionalising routes take note.
  4. Also following on from point 2), and perhaps heretically, it’s quite possible that supported housing support is too cheap, meaning that for many people living connected lives that they want to live becomes effectively impossible and people become prisoners in their own homes housing units.
  5. Last thing – separating the funding sources of housing benefit from local authority funding of support has not resulted in the meaningful separation of housing and support for many people. It has also not stopped a commercially driven drift away from people living in their houses in the middle of their streets, to ‘specialist’ complexes promoted by organisations grabbing a bigger share of the ‘market’. The money needs to be meaningfully controlled by people who can put it to good use, rather than leaving people at the mercy of landlords’ interests while being blamed for their rents being expensive.

Thoughts on this would be very welcome – I may well have made more mistakes than usual!