Involving families in investigating the deaths of learning disabled people #WCMTLD

20 Feb 2017 - No Comments

I am incredibly excited to share that I have been awarded a Winston Churchill Memorial Trust Travelling Fellowship 2017. The WCMT fellowship will cover my costs to travel to Canada, Australia and New Zealand for six weeks in total to look at what currently happens in those countries in relation to involving families, and learning from them, in the investigation of deaths of learning disabled people.


Over the last number of years I’ve spent a fair amount of my time and energy campaigning with Sara and other #JusticeforLB’ers to try and ensure some accountability for the wholly preventable death of LB. If you don’t know what happened to LB I’d start here:

For a chunk of last year I worked as one of the special advisors to the CQC Deaths Review team, focusing on hearing from families about their experiences of the NHS deaths investigations process. You can read the report I wrote here, the CQC report is available here and the Inquest report about their family listening day here.

A couple of weeks ago Prof Chris Hatton wrote an all too familiar account of what the current state of play is with regards to premature mortality of learning disabled people, It’s institutional disablism – deal with it is not a pretty read. Chris was blogging in response to a new Australian study published in BMJ Open showing almost identical findings to the UK Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD, 2013).

The Australian article by Julian TrollorPreeyaporn SrasuebkulHan Xu and Sophie Howlett concludes:

‘Adults with ID experience premature mortality and over-representation of potentially avoidable deaths. A national system of reporting of deaths in adults with ID is required. Inclusion in health policy and services development and in health promotion programmes is urgently required to address premature deaths and health inequalities for adults with ID’

Chris’ post highlights some of their findings in detail, also links in the CQC Deaths Review report and concludes:

‘In England there have also been multiple initiatives to improve various aspects of healthcare for people with learning disabilities, all operating on similar assumptions. But I think there is something crucial missing. Professionals within health systems have had sufficient evidence for some [time?] now – ignorance and inattention can no longer be used as reasons/excuses – indeed they can be seen as further signs of institutional disablism’.

I couldn’t agree more with Chris, I’ve been complaining about the same thing for years. We have enough evidence and research, it’s using it to bring about change that seems to be missing, and it’s that which I’m most interested in. After reading Chris’s blog my initial response was one of an overwhelmed sense of futility at the energy, love and angst that has already been expended in this direction. On reflection I think its very important to have as a reminder of the current status quo. I reflected on the need for acknowledgement the day after the CQCDeathsReview published, both about the premature mortality of certain groups, and about how families are treated by the NHS death investigation process.

Fellowship focus

The current focus of my WCMT fellowship is very ambitious, possibly too ambitious (nothing new there) and it’s eclectic (nothing new there either). I’m hoping that it will broadly look at whether families are involved in the investigation of the deaths of learning disabled people, if they are how that happens, and if they aren’t what other options are available to them. If all goes according to plan it will incorporate a focus on advocacy, activism, deinstitutionalisation and legal redress as mechanisms of support for bereaved relatives, and methods of improving care and patient safety for people with a learning disability.

I have a number of outline objectives which are currently as follows:

1. To see first‐hand how deaths of learning disabled people in Canada, Australia and New Zealand are investigated with a focus on involvement of bereaved relatives/families

2. To liaise with policy makers, disabled people, advocates, academics, journalists and legal professionals to understand their roles in learning from and preventing premature deaths

3. To gain a detailed understanding of actions key players could take to improve experiences and reduce premature mortality of learning disabled people

4. To relay learning in real time via social media e.g. blog posts, Twitter and craftivism to provoke reactions and develop discussions in UK and elsewhere

5. To improve practice by sharing final report with bereaved relatives, learning disabled people and campaigners, academics and the media, and those with a duty to investigate and prevent deaths.

In an ideal world the WCMT travelling fellowships enable people to visit other countries, study and learn about a particular approach or model or method and bring their learning back for the benefit of UK citizens. When it comes to premature mortality of learning disabled people, and learning from bereaved relatives and families, there is no ideal world.

Despite extensive searching of practice internationally there was no one country that excelled in this area, indeed many people told me that the UK were leading in this (yet we know we need to do better), so I spoke with a number of current and former WCMT fellows and spoke with campaigners, academics and those in the know and decided to focus on Canada, Australia and New Zealand, partly because it was clear there was an academic focus on the same issues (such as Trollor’s work), and partly because there were strong examples of activism by learning disabled people (for example the Huronia Speakers Bureau and Recounting Huronia Project).

The exact details of where and when I’ll travel have yet to be bottomed out. I’ve been incredibly lucky and am very grateful to a number of introductions already provided by people once I was shortlisted. That said, there is still time to influence my itinerary and I’d be truly delighted for any further introductions to learning disabled people, activists, journalists, academics, policy makers and in particular any introductions to bereaved relatives of learning disabled people who might wish to share their experience with me (or any bereaved relatives for that matter if they have thoughts about the investigation processes in any of those countries).

My biggest hope is that I can gather ideas and thoughts and methods to hold a mirror up to the institutional disablism that currently faces learning disabled people. I hope that through conversations, through provocations, through stitching, invariably through lots of laughter and probably some tears, that I can connect with others and reflect back what I learn. I know the experience will grow me personally, I feel sure that it will help with advocacy and campaigning work that I’m involved with, and I hope that the ripples will reach far and wide. I’ll be connecting up with UK individuals and organisations before leaving so please do get in touch if you are interested in knowing more.

I already feel incredibly privileged to have this opportunity, and that’s before I’ve even signed the undertaking and returned it. To bring it full circle I think it’s because it feels like an acknowledgement, that what matters to me and so many others (not least the brilliant community of JusticeforLB’ers) is important.

That it is not acceptable that learning disabled people are dying prematurely.

That it is not acceptable that bereaved families are treated so badly by those who should be providing them with answers and identifying improvements in care.

That this matters, and that in some small way others agree that it matters, and are prepared to invest a little to help me learn more, to travel and connect with others, to pick up ideas and build an even bigger momentum for change.

I’ll be using the hashtag #WCMTLD (for Winston Churchill Memorial Trust Learning Disability) when I blog or tweet and I hope that others will use it too to share ideas or contacts or things that might be of interest. As ever you can tweet me @georgejulian or drop me a line here or add a comment to this post. Thank you. I’ll give the final word to Winston Churchill himself:

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