It’s been an age (4 months) since I’ve blogged and whilst the title of this post doesn’t refer to me (the disappearing bit), it could do. I am still very much doing my open justice crowdfunded work, but as my crowdfunding has dropped off (some people died, some have been hit by the increases in the cost of living, some people have changed priorities, I’m grateful to all of them and always anticipated this would happen) I’ve ended up doing more consultancy work to support myself to continue with the inquest reporting.

Two of the inquests I was due to report in the first quarter of this year have been postponed. I have attended several pre-inquest review hearings but haven’t reported on them (I attend as background to the inquests when they eventually happen).

I continue to monitor how CQC are finding the care and support provided to learning disabled and autistic people, and routinely update my curated content pages here, where you can find at a glance Inadequate Care and Outstanding Care. I have attended a Care Standards Tribunal, well tried to join remotely, after numerous technical and communication difficulties where the sound kept dropping out, I eventually gave up and am just keeping an eye on the tribunal decisions and I’ll blog when it is available. I wrote up David Lodge’s inquest finding in my Spring 2025 column for Community Living and I am in regular contact with eight families who are either trying to secure an inquest for their loved one, or who are at some stage of the inquest process and whose inquests I will ultimately report.

Anyhow, this post wasn’t meant to just be a newsy update from me, it was designed to share three developments in the last year, all which relate to the lives and deaths of learning disabled and autistic people, that seem to be hiding, or rather disappearing, in plain sight.

Where is the Leder report?

The first is the absence of the annual Leder report that is meant to summarise the national learning from reviews into the deaths of learning disabled and autistic people. I’ve written about the Leder process a lot over the years, so much so I have a curated topic with links here Lacklustre Leder. Introduced a decade ago, to ensure the NHS learned from the lives and deaths of learning disabled people, four years ago the Leder contract ended at Bristol (on 31 May 2021) and was taken up by Kings College London.

KCL published the 2021 review in July 2022, the 2022 review in November 2023 and nothing has been published since. We are almost half way through 2025, and there has been no learning from the deaths of people in 2023 or 2024. With the exception of Sara constantly publicly asking where the report is, I’ve seen no public statement about its disappearance, complete apathy. I can’t help think this is part of a larger plan, the disappearing in plain sight. The indifference. I asked a question of one of the people involved some time ago and the delay was blamed on purdah (before the last general election, the election that took place on 4 July 2024, 10 months ago). I was informed the report had been submitted and was with NHS England. Today I have contacted the Leder team at Kings, and NHS England, to ask for a comment on where the report is. I’ll keep you posted if I hear anything back.

Dubious data disappearing

The second development is in the Assuring Transformation dataset, another NHS England product. The origins of the dataset was the poor state of data about where learning disabled and autistic people were being held in hospitals, and how little was known after Winterbourne View. Part of the failed Transforming Care programme was to establish monthly data collection.

The data has never been perfect, as one example, it changes over time, so the most recent monthly data *always* paints a more positive picture than the adjusted data in later months. There is also a contradiction where the data in the Assuring Transformation dataset does not map to the data in the Mental Health Services dataset. All of those grumbles aside, I find it a useful way of tracking the non-progress when it comes to learning disabled and autistic people held in hospitals.

One of the data tables in the Assuring Transformation dataset, Table 4.8 contains data relating to Total length of stay and inpatient bed type, by patient category. This data allows us to know the make up of patients held in hospitals. For example, in March 2024 it told us that there were 2,045 inpatients hospital at the time of the data collection (this figure had increased to 2,265 by the December dataset when those extra patients are ‘found’ and the data cleaned).

Table 4.8 told us that of those reported 2,045 inpatients in hospital, 335 patients had been in hospital for over 10 years. Of these 200 patients were reported as being learning disabled, 75 were autistic and 65 were learning disabled and autistic. Which told us that 8 out of 10 people stuck in hospital for over a decade were learning disabled.

The dataset also reports on children and young people. There were 205 children and young people held in hospitals in the March 2024 dataset and overall 88% of them were autistic and did not have a learning disability. Numbers are too small for the dataset to report on children held from 5-10 years, or 10+ years, but it tells us there are 20 children held between 2-5 years and 15 of them (72%) were autistic without a learning disability, the remaining 5 were learning disabled (with or without autism).

This data is extremely limited, but it does tell us something about how learning disabled people are being failed by society and left in hospital for extended periods of time. It may also suggest that when it comes to children and young people autistic people are bearing the brunt. Over time it has been possible to track the changing cohort in hospital, but all that changed over a year ago.

This data was ‘temporarily removed due to data processing issues’ in the April 2024 dataset and has still not returned, over a year later. This means it is no longer possible to identify how long people who are learning disabled and/or autistic are staying in hospital. We can see the change in population over time in the earlier data and there is no reason to suspect that will have changed significantly, but when does a temporary removal become permanent?

Political indifference

The final disappearing I wanted to highlight was the All Party Parliamentary Group on Learning Disability, which is where Members of Parliament gather to discuss issues of relevance to learning disabled people. It was showing as defunct on parliament’s website from April 2024 until someone finally realised and re-registered it on 7 May 2025. An entire year with no reported action, no meetings, no discussion.

During that period one of the work projects I’ve been involved with Reigniting Debate has been asking the question of how research findings can be used to engage policy makers with priorities for people with a learning disability. You can watch Matty from Sunderland People First discuss some of the work we did, including writing to MPs and highlighting the failures of the Transforming Care programme. We have not yet had a single reply from a Member of Parliament or the House of Lords since we wrote to a number of them in January of this year.

If you’re interested in the timeline of failures of the Transforming Care Programme that we put together you can view it here (if you click on the timeline you can download a pdf version which is a little easier to read).

Conclusion

I’m not sure where all this leaves us really, or why I’m writing about it, other than as with all my work I don’t want people to be able to say they didn’t know. This disappearing of the lives and deaths and concerns and hopes and dreams of learning disabled peopleis happening right now, and I’m really at a loss of what to do about it. I might send my own MP a link to this post and ask for him to ask some questions in parliament. Not really sure what else we can do, but I believe we must keep asking the questions, because otherwise the disappearing is made easier, and before we know it people’s human rights will be eroded even further, in plain sight.

Update 15 May 2025

As mentioned above I emailed the KCL Team and the NHS England LEDER Team email addresses for an update on where the report was on Monday. I asked:

I’m a freelance journalist and have been waiting for the publication of the 2023 LEDER report for months now. Could you please let me have a statement on where the report is, and whether the 2024 report is on course for publication or whether that is also delayed. 

The initial response from KCL on Tuesday was as follows:

Thanks for getting in touch. We have submitted the Learning from Lives and Deaths (LeDeR) 2023 report to NHS England a few months ago, where it is now undergoing its final checks. We are unable to say when it will be published, but we will announce on social media when it is available.

I asked for clarification:

Thanks for replying, and I’ll wait to hear what the NHS England mailbox offer as explanation for the lack of the 2023 report. Could you please confirm which month it was submitted, as “a few months ago” is a little vague for me to report. Thank you. 

Could you also respond about the 2024 report, is that on course for submission for publication in the usual timescales? 

They responded yesterday morning as follows:

Thanks for your patience. Regarding your query about the submission date of the 2023 report, we can only confirm at this time that the main report has been submitted and is currently undergoing final checks by NHS England. We anticipate it will be published soon, although we can’t confirm an exact date just yet. Any updates regarding its publication will be shared through our social media channels.

Concerning the 2024 report, we are doing everything we can to stay on track with the usual timescales. We are currently in discussions with NHSE about the 2024 report, but unfortunately, we can’t share any further details at this point. 

We are committed to transparent communication and endeavour to share any updates about the LeDeR project as and when they arise, as well as answering any direct questions in as much detail as we can. Thanks so much for your understanding.

Yesterday afternoon NHS England responded as follows:

We are working closely with colleagues at Kings College London who are finalising the report, and we are keen to publish as soon as possible.

We will update on LeDeR 2024 in due course.

Given the comments on commitments to transparent communication I figured I’d just share my requests and the responses direct. I wouldn’t usually do this, I’d rather provide a fuller explanation to anyone reading, but as you can see I have nothing to go on.

I heard from one source that some of the delays were due to NHS England wanting to suppress/edit/change/massage the data around self-harm and deaths of autistic people. As someone who once worked at the Statistics Office and saw the lengths that government departments would go to to suppress information that they didn’t like the look of (e.g. smoking rates in teenagers as reported in Expenditure and Food Survey data) this is in no way a surprise.

I won’t speculate further on why the delay, after all it’s so utterly predictable. Leder has a long history of academics prepared to capitulate to DH/NHSE/government demands – indeed that’s how we ended up with a non statutory review process in the first place. Shameful.