Transforming LEDER

Earlier this week I received an email from someone who’s job title is ‘National Transformation Lead for LeDeR’.

This was a bit of a surprise, imagine a programme that’s only 6yrs old requiring a ‘national transformation lead’. It’s such an NHS response to things.

Invent a programme, poorly resource it, put in poor leadership at every level, deny and defend its poor performance, let it limp on for a few years and then introduce a new layer of bureaucracy as we fiddle around the edges, performing improvement.

Many of us have been critical of the poor structure, performance and pointlessness of LEDER for many years. This was Prof Sara Ryan talking on BBC Breakfast three years ago:

You can read a collection of responses on this curated content post over here.

So what are the latest LEDER developments. This email was to alert us to a new policy, crassly called the Learning from lives and deaths – People with a learning disability and autistic people (LeDeR) policy 2021. It’s headline aim is quite remarkable, given this programme started in 2015:

This policy aims to set out for the first time for the NHS the core aims and values of the LeDeR programme and the expectations placed on different parts of the health and social care system in delivering the programme from June 2021.

Simultaneous to this policy announcement, Rebecca Thomas at HSJ tweeted about another review, since disappeared from the NHS England website.

The spoiler alert is that still no-one has been able to identify how it ended up with an acronym that isn’t actually an acronym of its name. LEDER, I refuse to type LeDeR and blindly just replicate that nonsense stands for Learning Disability Review of Mortality. The report didn’t unpick why the acronym makes no sense, but it did highlight so much else that makes no sense.

Who did the reviewers listen to?

So, what was the Ipsos MORI review about and what did it say I hear you ask. The report helpfully tells us that:

‘NHSEI commissioned Ipsos MORI to undertake a review of the existing LeDeR programme, engaging with a number of stakeholders to ensure a variety of viewpoints were captured’.

54 in-depth interviews, how many do you think were with bereaved families?

Go on, have a guess, after all the supposed commitment to ‘learning from deaths’ and engaging with bereaved families that NHSEI have performed in recent years. How seriously were the views, experiences and thoughts of this stakeholder group taken in this review?

Surely at the very least 20% of the interviews should have been with bereaved families, 20% with learning disabled people and self advocates? That would leave 60% for commissioners, providers and those involved with the LEDER processes in some way. Seem reasonable?

No, we learn that there were just 2 interviews with bereaved families.

There were 7 interviews with ‘people with a learning disability and/or their carers’ which is an extraordinary grouping too, and obscures the picture further. I’d love to know how many learning disabled people were actually spoken to.

There’s a footnote to say ‘please note that NHSEI plans to undertake further engagement with people with learning disabilities’ the perennial afterthought.

It’s quite something to launch a ‘learning from lives and deaths of’ policy at the same time as failing to, you know, genuinely engage with learning disabled people, or their bereaved families, to review a process of death investigation.

Then we learn:

‘Ipsos MORI and NHSEI worked in collaboration to identify potential participants. A specialist recruiter with experience recruiting senior figures across the public and private sectors undertook the recruitment’

Hmmmmmmm, what happened to a variety of views? Cherry picked by NHSEI. The ‘specialist’ recruiter clearly didn’t have any specialism in learning disability or working with bereaved families, and why on earth do NHSEI get to influence who Ipsos MORI spoke to? Why no open advertisement or collection of views and experiences.

What did the review find?

Exactly what so many of us have been saying for years. I’m going to run through the headlines/summary. There were three overarching views of the programme, I’ll discuss each in turn.

Evidence gathering

The LeDeR programme plays a central role in gathering critical and robust evidence on the issues faced by people with a learning disability across different care pathways locally and nationally.

I find this somewhat hard to believe.

Well, I believe that the stakeholders cherry picked by NHSEI and spoken to by Ipsos MORI might have this line of sight, but I’m not convinced that the statement is true.

Last October a review was published into the LEDER review conducted for Oliver McGowan, written by Fiona Ritchie. It makes clear that the role of the LEDER process is one of ‘learning review’ and not an investigative process.

‘LeDeR is not designed to be an investigation process but a learning review, which seeks to attach no blame and is meant to facilitate learning, generate recommendations and garner good practice, while tracking actions’.

One of the many flaws with LEDER is that it fails to do exactly this. That it is bereaved families, the ones not spoken to as part of this review, that hold the multiple strings of investigation, that gather information and documentation, that investigate and advocate.

If LEDER is ‘gathering critical and robust evidence’ where is it? How is it being acted on? How are people any safer now?

Personal gain

‘Stakeholders involved in LeDeR delivery highlighted how working on the programme had benefitted their personal and career development and contributed to their greater understanding of the local health and social care system’.

Wow, where to go with this. On the one hand I’m genuinely delighted that being involved in LEDER is giving people a leg up the slippery pole of an NHS career. I am, despite the sarcasm. I don’t really believe that we’ll ever stop learning disabled and autistic people dying preventable and premature deaths until more people within the system understand what’s happening, why and challenge it. So this is on one hand a good thing.

On the other I can’t help that think that leads to more churn – we know that most areas have failed to recruit or retain reviewers (no doubt not least in part due to the unrealistic expectations placed upon them).

Of course the obvious elephant in the room is that the beneficiaries of the LEDER programme should be learning disabled people. Six years in there should be clarity around what needs to change, there should be well written meaningful reports and creative resources, not dry and dull non-annual annual reports and that’s it.

Limited, unclear impact

‘It was felt that overall LeDeR’s impact had been limited so far, although it was recognised the programme is relatively recent. At a local level, the impact of the programme was seen to vary greatly between CCGs and it was suggested that a statutory process would help LeDeR to be more impactful on driving service change. At a national level, there was consensus that LeDeR’s impact on policy-making was unclear, and probably limited’.

Oh my, so many caveats, but basically it is clear LEDER is not working. Like some of us have been saying for years. You can’t have it both ways, if a ‘relatively recent’ programme requires a ‘transformation lead’ can we all just take a step back and ask whether it was designed incorrectly in the first place.

A poor man’s mortality review process, no statutory notifications, no resources, no training, no leadership, the most ambivalent academic approach to further one’s publication record without any passion or commitment to saving lives. It’s really galling.

Barriers and facilitators to conducting LEDER reviews

At this stage I have to give a special shout out to Prof Chris Hatton who used his amazing psychic powers back in July 2018 to foresee all of this and offer it free of charge. Likewise Sara Ryan and I have wasted hours of our lives we’ll never get back on phonecalls with Ray James and Roger Banks, providing feedback which of course is faux listened to and promptly ignored. Instead tax payer’s money is used for NHSEI to cherry pick who Ipsos MORI speak to, to find out much of what was already known.

The review identified LEDER reviewers found it challenging (impossible?) to prioritise reviews when they were not included in their job descriptions or work allocation. How can NHSEI claim to respect and care about this topic while also providing no resource or process to support reviewers to actually do this work.

There’s a positive spin put on the ‘diversity of the LeDeR workforce’ which a more cynical person might consider means the role is thrown at anyone and everyone. Apparently it can help bring a range of perspectives, but also a lack of consistency.

Training was ‘broadly perceived to be too limited as it does not include any hands-on training into how to carry out reviews’. What exactly does it cover? That might also feed into a lack of consistency, maybe, eh?

Lack of administrative support, support and training, crap web-platform were also cited as challenges. The report covers engagement barriers of various form.

‘There was a wide consensus that families and carers ought to be the key focus of reviews and their involvement was instrumental to building a holistic view of a person’s life’

The sheer irony of a review that only spoke to two bereaved families making this claim. Followed by further exploration that cites families willingness to engage could vary widely. You don’t say. It also mentions lack of awareness of the programme, sort of half suggesting that it is families not knowing that is the issue, rather than the utter chaotic state of LEDER, the lack of clarity, the ridiculous best kept secret that it is, the regional variations and its utterly dire performance to date.

Sharing learning

‘…the impact of the programme has been limited so far. The focus of the LeDeR programme to date was described as being heavily on completing reviews, and identifying problems. To date, this has limited translation into wider acton to improve services, and action is happening inconsistently across CCGs’.

Where to even go with this. If the focus has been on completing reviews, why are over half of them still outstanding? How utterly dire is this process?

Where is the moral and ethical obligation to take the supposedly identified learning and, you know, prevent other deaths happening? There is no point to a mortality review process that just furthers the careers of academics and reviewers, or allows some of the same to cruise to retirement while polishing their publication record, it is meant to be about saving lives.

The claim that the ‘annual reports were described as a strength of the LeDeR programme’ makes me so, so sad. They’re completely mediocre from my perspective. They’re formulaic, poorly presented, overly wordy and cherry pick one or two things to feature. How are our expectations so bleeding low?

Future of the LEDER programme

This review, that spoke with a handful of cherry picked stakeholders came up with two priorities for the future of LEDER. The first centred around the proportion of deaths that should be reviewed, some people thought only some deaths should be reviewed, some people were strongly against it. Of note Fiona Ritchie’s review mentioned earlier made a number of recommendations, the first of which was:

Reporting a person’s death to the LeDeR programme should be mandatory, with the responsibility placed on clinical commissioning groups (CCGs) to ensure this happens in their locality.

What is the point of a mortality review programme were reporting of mortality is not mandatory? It is nothing more than performative scrutiny in my opinion, being seen to be doing something, as opposed to addressing the issue in hand.

The second priority area discussed with stakeholders was priorities for the LEDER workforce in the future. Apparently ‘on balance’ not sure what that means when you’re only really speaking with a handful of stakeholders, but on balance it was felt LEDER responsibility should remain a local matter ‘as the most effective way of deriving learning for local service delivery. However, there is an important role for national oversight of this including ensuring consistency, bringing together learning, and assisting areas where there are backlogs’.

Wow. Again. If the annual reports were considered to be a strength of the programme, where is the evidence that local systems are deriving learning for local service delivery?

In July 2020 I was told by Ray James that £5.2million was being invested in the LEDER programme. I’ve heard since that the tender that was put out for someone to run the programme was explicit that the methodology couldn’t be changed. Bit of a catch 22 then isn’t it. Garbage in, garbage out.

The absence of any national oversight is probably how we managed to get six years into this mess.

I don’t know how to end this post. Every dealing to do with LEDER, every report, phonecall, review, it’s always so utterly underwhelming. There’s no passion or commitment for better. There’s no leadership. There’s no-one (whose job it is to do so) standing up and saying enough is enough.

It’s utterly exhausting writing these posts, time and again. Can someone please just do something, and no, I don’t mean a new policy, I mean actually do something to stop the need for LEDER reviews in the first place. Act on the learning we already hold.

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