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! 


  1. Useful to me for sure. Carry on (calmly or not)!

  2. I find your analysis so helpful Chris - thank you. I am really appreciative of the time and commitment that you dedicate to providing this support.

  3. Thanks both - think I just have a high boredom threshold...

  4. thank you Chris, it has been helpful to point those leading initiatives in health and social care (or equivalent) from other countries to your analysis.

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