Read on Twitter
I'm delighted to finally be able to share my @wcmtuk report written following my travels to Australia, Canada and New Zealand.
Walking backwards into the future: involving families in investigating the deaths of learning disabled people https://www.wcmt.org.uk/sites/default/files/report-documents/Julian%20G%202017%20Final.pdf
1/23
Walking backwards into the future: involving families in investigating the deaths of learning disabled people https://www.wcmt.org.uk/sites/default/files/report-documents/Julian%20G%202017%20Final.pdf
1/23
Here's a short film of the executive summary of the report, introduce my Fellowship and briefly discussing what I found https://vimeo.com/438339978
I hope a video version is more accessible to people than a written report alone. I've a transcript of the film if anyone needs it
2/
I hope a video version is more accessible to people than a written report alone. I've a transcript of the film if anyone needs it
2/
The key finding was that investigations do not always happen when a learning disabled person died.
Additionally, even when some sort of investigation did happen, families were not routinely involved in them.
3/
Additionally, even when some sort of investigation did happen, families were not routinely involved in them.
3/
My report is organised in chapters that discuss:
* The reasons for my Fellowship and the approach taken
* Background and context, including what investigations should happen when someone dies
* Family involvement in death investigations
* Common themes and reflections
4/
* The reasons for my Fellowship and the approach taken
* Background and context, including what investigations should happen when someone dies
* Family involvement in death investigations
* Common themes and reflections
4/
* What, or who, helps families
* Conclusions, reflections and what next.
There are also 4 appendices:
1) references
2) links and additional resources
3) a detailed overview of death investigation processes as they currently exist, and
4) a list of who I met with.
5/
* Conclusions, reflections and what next.
There are also 4 appendices:
1) references
2) links and additional resources
3) a detailed overview of death investigation processes as they currently exist, and
4) a list of who I met with.
5/
I use the term learning disabled people throughout my report, in keeping with the language that learning disabled people in the UK identify as their preference.
In the countries I visited other terms are sometimes used including intellectual or developmental disability.
6/
In the countries I visited other terms are sometimes used including intellectual or developmental disability.
6/
It's some time since I started my Fellowship and there appears to be slowly increasing scrutiny into the deaths of learning disabled people.
This is a very welcome development. I hope family perspectives and involvement are routinely incorporated in this increased scrutiny.
7/
This is a very welcome development. I hope family perspectives and involvement are routinely incorporated in this increased scrutiny.
7/
This month New Zealand's Chief Ombudsman published his investigation report: Off the Record: An investigation into the Ministry of Health’s collection, use, and reporting of information about the deaths of people with intellectual disabilities https://www.ombudsman.parliament.nz/resources/off-the-record
8/
8/
In February the @NDIS Quality and Safeguards Commission published a scoping study by Carmela Salamon and @Trollor1 Causes and contributors to the deaths of people with disability in Australia https://www.ndiscommission.gov.au/causes-and-contributors-deaths-people-disability
9/
9/
Last week the 2019 Annual Report of the Learning Disabilities Mortality Review Programme @leder_team was published in England http://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR_2019_annual_report_FINAL.pdf
The evidence is crystal clear that learning disabled people continue to die decades prematurely, that's before #Covid19
10/
The evidence is crystal clear that learning disabled people continue to die decades prematurely, that's before #Covid19
10/
My Fellowship report ends with some things to think about; I'll list them here:
1) Learning disabled people's life expectancy should be the same as those without a learning disability
[I think we have to keep reminding people of this]
11/
1) Learning disabled people's life expectancy should be the same as those without a learning disability
[I think we have to keep reminding people of this]
11/
2) Reducing the discrimination experienced by learning disabled people and the bias (unconscious or otherwise) of those involved in providing care, is central to improving care and reducing premature deaths
12/
12/
3) There should be as much curiosity applied to the death of a learning disabled person as to any other human being
[A thread from last week on how many learning disabled people's deaths receive an inquest according to latest #leder report is here https://twitter.com/GeorgeJulian/status/1283747048622260224]
13/
[A thread from last week on how many learning disabled people's deaths receive an inquest according to latest #leder report is here https://twitter.com/GeorgeJulian/status/1283747048622260224]
13/
4) There is a need to develop expertise and influence investigators
[In my opinion, for investigations to be most useful and accurate, those conducting them need to have a good understanding of the lives and deaths of learning disabled people]
14/
[In my opinion, for investigations to be most useful and accurate, those conducting them need to have a good understanding of the lives and deaths of learning disabled people]
14/
5) Investigations are most meaningful for families when they happen quickly, are robust and genuine in their intent to bring about change
6) Immediate action should be taken to reduce additional harm caused to bereaved families by processes of death investigation
15/
6) Immediate action should be taken to reduce additional harm caused to bereaved families by processes of death investigation
15/
[I can not stress these last two points enough; several families I met had to fight for years to secure scrutiny into the deaths of their loved ones; these battles, the grinding indifference and the trauma of reliving things are doing real time damage and harm to people]
16/
16/
7) Investigations without improvement are unethical
[I discuss the notion of performative scrutiny in the report, too often when an investigation is secured it can be seen to be about performing some sort of scrutiny, rather than leading to meaningful improvement]
17/
[I discuss the notion of performative scrutiny in the report, too often when an investigation is secured it can be seen to be about performing some sort of scrutiny, rather than leading to meaningful improvement]
17/
One of the most disturbing questions I'm left with is given how little interest there is in the premature deaths of learning disabled people, what happens if someone has no family, or is isolated from their family and community? Does any investigation actually happen?
18/
18/
These are the thoughts and questions that I'll keep working on. I hope my report and Fellowship will lead to people considering how they can do more to investigate the deaths of learning disabled people, and make sure families are meaningfully involved in those processes.
19/
19/
The point of a @wcmtuk Fellowship is to travel to learn and return to inspire, so now the responsibility is back on me to (continue to) do what I can to bring about change in the UK.
20/
20/
I'm talking to a few people about how best to do that but please get in touch if you'd like a conversation or think that my findings might be useful to your work, or group, or family.
21/
21/
I'll end with a huge thank you to everyone who helped me on my Fellowship, who shared their experiences with me and of course to @wcmtuk for recognising that this is an important issue and funding my travels #WCMTLD
The report link again https://www.wcmt.org.uk/sites/default/files/report-documents/Julian%20G%202017%20Final.pdf
22/
The report link again https://www.wcmt.org.uk/sites/default/files/report-documents/Julian%20G%202017%20Final.pdf
22/
Please feel free to share this thread, my report or film with anyone who you think might be interested #WCMTLD
/END
/END
