Tuesday, 2 October 2018

Restraints, assaults and self-harm in inpatient units

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, 12 September 2018

Valuing People Then - The Government Response to the LEDER report

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, 5 July 2018

Ignorance Is Strength - what do we know about the progress of Transforming Care?

On 5th July 2018 there will be/was a parliamentary Westminster Hall debate proposed by Norman Lamb MP (in the coalition government of 2010-2015, a Lib Dem health minister who continues to be actively engaged with what’s happening to/with people with learning disabilities).

Here is where you can get information on the debate itself, including watching it, although in characteristic and revealing fashion it is mis-titled as ‘Future of the Transforming Social Care programme’. The Commons Library has also produced a short document with links to many relevant reports.

 "That this House expresses concern at the slow progress made under the Transforming Care programme, which was set up to improve the quality of care and quality of life for children and adults with a learning disability and/or autism who display behaviours that challenge;
·        notes that evidence continues to emerge of the neglect, abuse, poor care, and premature deaths of people with learning disabilities;
·        recognises that a substantial number of people with learning disabilities remain trapped in, and continue to be inappropriately admitted to, Assessment and Treatment Units (ATUs) rather than living independently with support close to their families and friends;
·        is concerned at the lack of capacity and capability of community services, as highlighted by the National Audit Office; believes that the Transforming Care programme is unlikely to realise the ambitions set out in the ‘Building the Right Support’ strategy before it ends in March 2019;
·        calls on the Government to commit to a successor programme to Transforming Care in order to realise the ambition of a shift away from institutional care by investing in community services across education, health and social care;
·        believes that such services must adopt a lifelong, early intervention and prevention approach, protect the human rights of children and adults with learning disabilities and/or autism, and promote their independence and wellbeing through delivery of the right support, in the right place, at the right time;
·        and further calls on the Government to ensure that such a programme is prioritised and properly resourced."

This blogpost is going to summarise where I think we’re at with Transforming Care, with a bit of focus on the evidence we as the public do and don’t have. I’m going to try cover quite a lot of ground – there are many over-detailed posts on specific aspects of this on my blog.

Brief background: a BBC Panorama undercover investigation of a specialist inpatient unit for people with learning disabilities and/or autistic people, Winterbourne View, in 2011 revealed to the public horrific abuse from staff, eventually resulting in several prosecutions. This also helped kickstart a process of bringing into the light that an unknown number of people (in the thousands) were in these kinds of places (both NHS and private sector), sometimes for decades and a long way from home, and regularly experiencing seclusion, restraint, assault and antipsychotic medication rather than effective support to help people move on.

In 2012 the government responded with ‘Transforming Care’, which went through a number of guises before being rebooted in 2015 as the NHS England-led Transforming Care policy/programme, summarised in 'Building The Right Support'. This is designed to reduce the number of people with learning disabilities and autistic people in specialist inpatient services, and to increase and improve the support people get such that the option of putting people into inpatient services does not arise, and is due to wrap up as a programme at the end of March 2019.

So – what do we know about how Transforming Care is going, and what don’t we know? In some ways (thanks to the continuing efforts of NHS Digital) the information we (the public) have about people with learning disabilities and/or autistic people in inpatient units is getting better, in other ways it is getting worse.

What do we know about people in inpatient units – the headline numbers

How the Transforming Care programme has mostly been judged (and what it’s put most of its money and people into) is reducing the number of inpatient units for people with learning disabilities and/or autistic people.

In their ‘Building The Right Support’ statement of intent in October 2015, NHS England and others said that by March 2019 there would be (from a baseline they described as 2,600 people in these units on any one day) a reduction of 35% - 50% in the number of inpatient places from October 2015 to March 2019, which translates to inpatient places for 1,300 – 1,700 people with learning disabilities and/or autistic people.

Based on information that NHS England and NHS Digital have been publishing for a while on people on what commissioners think are specialist inpatient units for people with learning disabilities and/or autistic people (called the ‘Assuring Transformation’ dataset), we know that:
  • In May 2018, there were 2,400 people recorded as being in these units. This will be an under-estimate because commissioners don’t always report information on time but can add it later, and this typically results in at least 100 extra people eventually being ‘found’ for any given month. So my estimate would be in May 2018 there were around 2,500 people in these units. This compares to 2,615 people in March 2016, an overall reduction of 4.4% in over 2 years. To reach the original targets, reductions in the number of people in these units will have to be between 32% and 48%, in 10 months.
  • The average length of time that people have lived in their current inpatient unit has dropped, from 1,082 days (just under 3 years) in 965 days (around 2 years 8 months) in May 2018. But many people are regularly transferred straight from one unit to another – people’s overall length of continuous stay in inpatient units has not changed, from 1,954 days (5 years 4 months) in March 2016 to 1,960 days (still 5 years 4 months) in May 2018.
  • How far people are from their home when they’re in these units wasn’t reported in March 2016. Where this was known by commissioners in May 2018 (and it wasn’t for 295 people), 22% of people were between 50km and 100km from home and a quarter (25%) of people were more than 100km from home.

On these three straightforward measures, the Transforming Care programme has not achieved what it was supposed to. The number of people in inpatient units has not changed much at all over time, people are still spending on average more than 5 years in inpatient units, and inpatient services are far from local (at least 50km far) for almost half of people in them. On other measures too, like the legal status of people in inpatient units, the types of unit people are in, and the security level of inpatient units, there has been hardly any change over the course of the Transforming Care programme.

There are also some worrying trends in the ‘Assuring Transformation’ dataset, for example:
  • The number of children and young people aged under 18 in these units is sharply increasing, from 170 young people in March 2016 to at least 250 young people in May 2018, an increase of 47% in just over two years.
  • The proportion of people in these units labelled as autistic (with or without accompanying learning disabilities) has increased from 38% of people in these units in March 2016 to 48% of people in May 2018.
  • Of the 2,010 people ‘admitted’ to inpatient units in the year June 2017 to May 2018, 18% (360 people) were people who were re-admitted to an inpatient unit within a year of their last stay, and over a quarter (26%; 515 people) were actually transfers straight from a different inpatient unit. These proportions of people being re-admitted or transferred are stable or if anything slightly increasing from the early days of Transforming Care in early 2016.
  • The private sector is currently operating around half of all these inpatient places,with a slow drift upwards in this proportion over time. Where direct comparisons have been done, private sector inpatient units have been of poorer quality, and some organisations run inpatient serves that receive consistently poor CQC ratings.

Also worrying is the information coming from a different dataset run by NHS Digital, the Mental Health Services Dataset (MHSDS), which reports the number of people that service providers (rather than commissioners) report as people with learning disabilities and/or autistic people in mainly generic mental health inpatient services:
  • At the end of March 2018, 3,540 people with learning disabilities and/or autistic people were in some form of mental health inpatient service.
  • There is some overlap with the Assuring Transformation data (1,535 of the 3,540 people were in a ‘learning disability ward’) but there are perhaps altogether getting on for 4,000 people with learning disabilities or autistic people in some form of specialist inpatient service on any given day, with people in generic mental health inpatient services generally staying for much shorter periods of time.

Some things that we don’t know (any more) about people in inpatient units

NHS England have been repeatedly criticised by parliamentary select committees and the National Audit Office for not having and sharing enough decent information about how well Transforming Care is doing, and what impact (if any) it is having on people and families. And the hard work that has gone into developing and maintaining both the Assuring Transformation and MHSDS datasets shows just how difficult this can be. But there are important sources of information that NHS England have discontinued, not made public, or shelved, that are essential for understanding what is happening with Transforming Care. Here are some that I know of – there may well be others:
  • The Learning Disability Census was a complete annual census of inpatient services for people with learning disabilities and/or autistic people that ran for three years from 2013 to 2015 but has since been discontinued. Among other things, this census provided invaluable information such as people’s experiences of seclusion, restraint, assault, self-harm and antipsychotic medication usage, and also in the fees charged by these units (running at over half a billion pounds every year in 2015) that have not been collected and/or made publicly available since. This is crucial information for proper scrutiny of these units and what they are costing the public purse.
  • Well over a year ago, NHS England commissioned the University of Birmingham and partners to conduct a ‘national evaluation of the Building The Right Support’ programme, using an ‘action research’ methodology to ‘inform the national and local implementation of the programme’. To date, no products of this ‘action research’ project have been published, although I believe at least one substantial report does exist. Why?
  • In 2017, the National Institute for Health Research (NIHR) put out a call to fund a research project also evaluating the ‘Transforming Care’ programme. As the call states: “None of the projects above are exploring in depth the quality of life outcomes and the quality of care of people in the community settings in which they live . Therefore, there is a need (and a demand from people with disabilities and carers and advocates) for independent research to focus on measuring changes in quality of life and support over time and so assess the impact of the programme on the lived experience of people.” The commissioned project was supposed to start in January 2018. My understanding is that despite at least two grant proposals being shortlisted, it seems that NHS England have decided not to fund this grant proposal at all, despite there being no other way to track the impact of Transforming Care over time on the actual lives of people on the receiving end.
  • The NIHR research call also mentioned two other reports that were ‘about to be published’: “A systematic review of the literature and a report from the analysis of the live clinical audit platform data prepared by Dr Peter Langdon and colleagues is about to be published. Findings from a Quality and Outcomes Research Unit study on the views and experiences of commissioners, including views on the Transforming Care programme, is about to be published.” Where are they?

We also know very little of more murky consequences of the Transforming Care programme, such as the extent to which providers of inpatient unit services can ‘disappear’ people from the statistics by inventing ‘new’ types of service that aren't officially inpatient unit but may feel like them to the people living in them, and by re-registering inpatient units as residential care homes (again, do they feel any different apart from being cheaper to run?). We also don’t know how many people use inpatient services over the course of a year, which may be more meaningful than snapshots at any given point in time.

This absence or withholding of relevant information severely hampers public scrutiny and understanding of the Transforming Care and how it might operate more effectively.

The wider picture

So far I’ve focused on information about what Transforming Care is trying to move away from (the number of people in inpatient units). What about what they’re trying to move towards, and how well that is going? Although there is less specification about this in 'Building The Right Support', some main elements include better community-based support for people who need it (including support in childhood), better housing options for people, and better support for people in distress, resulting in inpatient services no longer being seen as a necessary option for nearly as many people.

Information about the extent to which the kinds of community-based services and support advocated in Transforming Care, and their impact on people’s lives, is seriously lacking, but available straws in the wind are, on the whole, not encouraging. For example:
  • Community teams for children with learning disabilities and/or autistic people. There is no national information on these teams on what they do. An NHS Benchmarking project working with 49 organisations has reported some information on community services for children with learning disabilities . Here the trends look pretty catastrophic. In 2015/16 there were 2,289 contacts with children with learning disabilities made by community health services per 100,000 general child population – a figure already lower than the equivalent for adult teams. By 2017 this had dropped to 1,471 contacts with children per 100,000 population, a drop of over a third. Over the same year, the average waiting time for a routine appointment for children with learning disabilities increased from 32 days to 72 days.
  • Coupled with the increasing number of children and young with learning disabilities and/or autistic children in inpatient units (with more in residential special schools), a general drift towards special schools, and the high numbers of children and young people with learning disabilities and/or autistic children being prescribed psychoactive medication, early support for children and families looks like it’s going in the wrong direction.
  • Community teams for adults with learning disabilities and/or autistic people – again, there is no national information here. The same NHS Benchmarking project reports that the number of contacts with adults with learning disabilities made by community health services has increased, from 2,688 contacts per 100,000 adult general population in 2015/16 to 2,756 contacts per 100,000 population in 2017. But there are signs that community health services are ‘doing more with less’, and are creaking under the strain. For example, the waiting time from referral to assessment has increased for ‘routine’ referrals from 34 days in 2015/16 to 41 days in 2017. The skills of these community teams are also changing – 61% of staff in these services were registered nurses in 2015/16, compared to 53% of staff in 2017. The number of learning disability nurses working in the NHS has also been plummeting for some years now.
  • In terms of where people are living, there is national information (NHS Digital) for adults with learning disabilities aged 18-64 who are getting long-term social care support (so not including autistic people without learning disabilities, people aged under 18 or over 65, people with support being paid for by health services, or the much larger number of people not getting long-term social care support). This information shows that the number of people living in residential care is dropping, the number of people with tenancies or living in supported living places is increasing, but the number of adults still living with their families is also increasing.

In terms of information on the wider picture, Building The Right Support made a number of promises, including:
  • ·   “We will explore with transforming care partnerships an appropriate way to monitor improvements in quality of life, but are minded to support areas to rollout use of the Health Equality Framework tool to monitor quality of life. In particular, we are considering how to support the use of this tool to understand changes to quality of life as people are supported to move out of inpatient services.”
  • ·    “We will also revise the Learning Disability Self-Assessment Framework (SAF) and the Autism Self-Assessment Framework so that they reflect how well local areas are doing”.

The Learning Disability Self-Assessment Framework, in particular, is much missed by self-advocacy and family groups in many areas as a way of holding professionals in their local areas to account, but there has been no agreement between the Department of Health and Social Care, NHS England, and the Association of Directors of Social Services that they will support and fund another one.

Ignorance is Strength

In this post, I’ve tried to set out a quick summary of what we as the public know about the progress of Transforming Care so far, and also what we don’t know. Within the narrow range of things we have information about, progress seems to be slow, and the wider picture is not encouraging. And the information made available to us, the public, is a tiny fraction of what is needed for proper scrutiny. Surely this information would be useful to everyone willing Transforming Care to succeed?

Tuesday, 5 June 2018

Education statistics and children with 'autistic spectrum disorder'

This blogpost is a companion to a recent post I did on Departmentfor Education (DfE) statistics on children and young people identified withinthe English education system as children/young people with learning disabilities, recorded in an annual census of schools. This post reproduces some of the statistics I did for that post with a different group of children and young people; children and young people with a primary Special Educational Need of ‘Autistic spectrum disorder’ (this is the DfE descriptor rather than wording I would choose). As with the previous post, this post will mainly focus on children who have been judged to require specific support in the form of an SEN statement (historically) or now (magically) an Education, Health and Care (EHC) plan.

First question - how many children and young people with statements/EHC plans associated with a ‘primary need’ of ‘autistic spectrum disorder’ are recorded in DfE statistics? The first graph below shows the number of children with a ‘primary SEN need’ of ‘autistic spectrum disorder’, from 2010 to 2017.

The graph shows that in 2017, just over 60,000 children (60,832 children) in England (over a quarter (27%) of all children with statements or EHC plans) had a statement/EHC plan and were identified as children with ‘autistic spectrum disorder’. This is an increase of 55% in the number of children with a statement/EHC plan and a ‘primary need’ of ‘autistic spectrum disorder in the seven years from 2010, when 39,320 children were identified.

I also looked at how many of these children had a ‘secondary SEN need’ recorded in 2017 alongside their primary need.

For those with a statement/EHC plan and a primary need of ‘autistic spectrum disorder’, around two fifths (42%) had a secondary SEN identified, most commonly Speech, Language and Communication Needs (8,611 children; 14.2%), Severe Learning Difficulties (4,511 children; 7.4%), Social, Emotional and Mental Health (4,267 children; 7.0%), and Moderate Learning Difficulties (3,588 children; 5.9%). An additional 13,175 children had a secondary need of ‘autistic spectrum disorder’ identified alongside a different primary SEN, most commonly Severe Learning Difficulties (5,422 children), Moderate Learning Difficulties (2,150 children), Speech, Language and Communication Needs (1,991 children), and Social, Emotional and Mental Health (1,856 children).

Second question: At what ages are children/young people most likely to be identified by education systems as requiring a statement/EHC plan associated with ‘autistic spectrum disorder’? The graph below shows the rates (per 1,000 of all children) of children with statements/EHCPs and a ‘primary need’ of ‘autistic spectrum disorder’  at ages 5-15 years (when the information about children is likely to be more complete).

Identification rates seem to gradually increase through the early primary school years, with a bigger increase through the end of primary school into secondary school, then a slight reduction at age 15.

Third question: How many autistic children and young people are being educated in mainstream schools or special schools? The graph below shows the number of children with a statement/EHC plan and a ‘primary need’ of ‘autistic spectrum disorder’ being educated in mainstream schools and special schools in England, from 2010 through to 2017. These figures don’t include potentially substantial but often not really known numbers of children not in school at all (including those being home educated), or in places like residential special schools or specialist inpatient units.

For children with statements/EHC plans associated with ‘autistic spectrum disorder’, the number of children in mainstream schools has increased from 22,800 children in 2010 to 31,092 children in 2017, an increase of 36% in seven years. However, the number of children in special schools has increased from 16,520 children in 2010 to 29,740 children in 2017, a much faster rate of increase of 80% in seven years. The number of children with a statement/EHC plan associated with ‘autistic spectrum disorder’ in special schools in 2017 has almost caught up with the number of children in mainstream schools.

The next graph below puts this information together to show the proportion of children with a statement/EHC plan associated with ‘autistic spectrum disorder’ in mainstream schools from 2010 to 2017 – the percentage of children in mainstream schools has decreased from 58% in 2010 to 51% in 2017.

Fourth question – how many children with statements/EHCPs associated with ‘autistic spectrum disorder’ are eligible for free school meals? Autistic children were twice as likely (28%) than all children in schools (14%) to be eligible for free school meals.

Fifth question – how much school do children with statements/EHCPs associated with ‘autistic spectrum disorder’ miss, either through absences or exclusions?

DfE report statistics on the proportion of school half-day sessions missed through authorised and unauthorised absences from school. This is not just for children with a statement/EHC plan, but also includes children at the level of School Action Plus (a historic category somewhere between a statement and SEN Support). In 2016/17, children with a ‘primary need’ of ‘autistic spectrum disorder’ missed 5.0% of their school sessions (a half day every two weeks) due to authorised absences, compared to 3.4% of all children in school. Levels of unauthorised absences were similar for autistic children (1.5% of school sessions missed) compared to all children (1.3% of school sessions missed).

Finally, DfE statistics report the percentage of children who experienced fixed-term and permanent exclusions from school in 2015/16. Children with a ‘primary need’ of ‘autistic spectrum disorder’ were almost three times as likely to have experienced at least one fixed period exclusion in 2016/17 (4.3% of autistic children; 9,040 children) than children without identified special educational needs (1.5% of children). Levels of permanent school exclusions were also higher for autistic children (150 exclusions in 2016/17; 0.15% of children) than for children without identified special educational needs (less than 0.1%).

For children without SEN, the most common reasons for fixed period exclusions were persistent disruptive behaviour (26.9% of exclusions for this group), ‘other’ (21.2%), physical assault against a pupil (18.8%), and verbal abuse/threatening behaviour against an adult (16.2%). For children with a ‘primary need’ of ‘autistic spectrum disorder’, the most common reasons were: physical assault against an adult (23.6% of exclusions), persistent disruptive behaviour (19.9%), physical assault against a pupil (17.6%), and verbal abuse/threatening behaviour against an adult (16.4%).

For children without SEN, the most common reasons for permanent exclusions were persistent disruptive behaviour (31.9% of exclusions), ‘other’ (18.5%), physical assault against a pupil (13.4%), and drug and alcohol related reasons (11.7%). For children with a ‘primary need’ of ‘autistic spectrum disorder’ the most common reasons were physical assault against an adult (33.3%) and persistent disruptive behaviour (23.3%).

  • Unlike some other categories of ‘special educational needs’, the number of children with a statement/Education Health and Care Plan and a ‘primary care need’ of ‘autistic spectrum disorder’ has rapidly increased to just over  60,000 children in the seven years from 2010 to 2017, now representing over a quarter of all children with statements/EHCPs.
  • As with other groups of children, from 2010 to 2017 there has been a gradual drift towards special schooling for autistic children.
  • Children with a ‘primary need’ of ‘autistic spectrum disorder’ are twice as likely  to be eligible for free school meals (28% of children) than children generally.
  • Children with a ‘primary need’ of ‘autistic spectrum disorder’ are more likely than children not identified as having special educational needs to have authorised absences from school (levels of unauthorised absences are similar), and to experience both fixed period and permanent exclusions from school.