Six months of crowdfunded #OpenJustice work

At the start of May I blogged about how I’d asked the kind souls who live on the internet to support me with my Open Justice work. I asked for help and you replied, with your cash and your words of support, and for that I’m still so very grateful. I wrote an update of the first months’ work and intended to update again after three or four months but I kept waiting for some very good news, which I received today, so it’s finally time to put fingers to keyboard.

Open Justice Work

First up, a recap on the last six months and what I’ve used your money for. In the spirit of transparency I can tell you I have 62 monthly donors at the moment and that amounts to almost £600 per month. The money has been used to cover my time and expenses as I liaise with bereaved families, send emails with information and support, and negotiate with the systems of accountability that should be getting answers for families. I have been alerted to four new deaths of learning disabled people in the last six months and provided information on processes and options to some of those families and friends seeking answers.

In May 2018 Dimensions produced Dying To Matter resources (a short leaflet and a more detailed guide) that detail what might happen when a learning disabled person dies. I was pleased to be able to feed into the development of those resources and have been so relieved that they are available to share with recently bereaved families, their friends and advocates. They’re worth looking at if you’ve not had chance to check them out yet.

I’ve been up to Sheffield twice, once for a pre-inquest review meeting and once for a meeting with the CCG. This is in relation to Laura Booth’s death. Laura’s parents, Kenneth and Patricia, are steadfast in their commitment to uncovering what went wrong for Laura – she went into hospital for a routine eye operation and never came home. I was alerted to them by the brilliant Jayne McCubbin from BBC Breakfast, you can see what they had to say here:

Laura's story

"We went in the hospital with our daughter for an eye operation and came out with a death certificate."BBC Breakfast has heard concerns that malnutrition may have contributed to death of 21 year old Laura who had learning and physical disabilities.We shared those concerns with a coroner who has now ordered an inquest.

Posted by BBC Breakfast on Thursday, February 15, 2018

Patricia and Kenneth are articulate and committed to getting answers, they have a good legal team, and I’ve been doing my best to support them further as the wheels of bureaucracy grind slowly forward. They’d like Laura’s inquest tweeted so that will be on the cards in due course.

I’ve spoken with a number of other families who were hoping to have inquests imminently but they have been delayed for one reason or another. I’ve provided support and advice on campaigning, as far as I have any to offer. I’ve also committed to live tweeting Thomas Rawnsley’s inquest when it happens next year. You can read the independent investigation into Thomas’s death that was published in July here, needless to say it’s a very grim read. There was some commentary from myself at the time it was published here (click on the tweet and it should open the thread in a new window):

One of the unexpected benefits of having a wonderful crowd of funders who’ve got my back is I can launch into such twitter rants and know that I’m not alone, I’m not the only one who sees the world this way, or thinks this should be different. I know this anyway, but it’s much more reassuring when people have actually paid you to do this work. I am so humbled still.

Another delight of having an income is that I’ve been able to say yes to a number of opportunities that I might have had to turn down otherwise. I have been to two workshops to develop research funding bids, no idea if they’ll come off but it felt good to be involved and know that I could cover my time with the crowdfunded income. I’ve spoken to three different journalists about stories they were working on. I also went to London for an afternoon meeting with a number of interested people, sparked by a twitter conversation, to explore what more, or what next, for providing scrutiny into premature deaths of learning disabled people. Last, but by no means least, I put a funding application together. More on that later.

Nesta / Observer New Radicals 

Last month a list of ‘New Radicals‘ was announced. Compiled by Nesta and the Observer every two years, its a list of ‘radical-thinking individuals and organisations changing the UK for the better’.

I was honoured, and somewhat uncomfortable to be named on the list. I was nominated by a supporter, had a phone interview chat thing and didn’t think an awful lot more of it. I was told the week before the list went live that I had been selected. Given my very public critique of all things awards I felt deeply conflicted.

Then I received a lovely DM on twitter from someone who reminded me that it was important work and that my discomfort was misplaced because if I want to keep challenging things and improving them then I have to get more comfortable with my role within that. It still sits slightly awkwardly if I’m honest but if it legitimises further the need for scrutiny, and if it provides an acknowledgement to those who are supporting me, then I’ll learn to live with my awkwardness.

Winston Churchill Memorial Trust Fellowship – Phase 2

Last month I visited Canada for Phase 2 of my WCMT 2017 Fellowship. You can read about the trip and the fellowship as a whole on my WCMT website here. My fellowship has been looking at Involving families in investigating the deaths of learning disabled people and saw me visit Australia, New Zealand and Canada. Next up is to try and process all that I heard and condense it into something useful. I’m determined to produce something more useful than just a report (as well as a report). So watch this space. WCMT cover your expenses and travel costs and I’ve heard that usually employers make a contribution by gifting people time to travel (often combined with annual leave allowances). As someone who has been self employed for almost six years now I have no such luxury of paid annual leave allowances, but it was good to know I had my crowdfunded income to draw on if I needed it while I was away.

Paul Hamlyn Foundation Ideas and Pioneers

Finally, I mentioned at the start of this post that I was waiting for some good news. Which I received this afternoon. I am so excited, and relieved, to share with you that I have been awarded a grant from the Paul Hamlyn Foundation Ideas and Pioneers fund. My grant will start in December and last for 7 months. It includes a contribution towards my time to scope what the future of my Open Justice work might look like, to explore funding opportunities, to develop some prototype resources as a result of the work done already and to help others do similar work, and includes the costs to live tweet an inquest relating to someone who died in mental health care (or non-care). The publication of the Mazars report back in December 2015 confirmed the suspicion that learning disabled people are not the only group whose deaths are receiving insufficient scrutiny. I’d like to explore whether there is interest in live tweeting an inquest from someone who used mental health services, so please get in touch if you’re a family who would like help with that. The PHF grant will cover two days a week of my time so there is still plenty of time left to cover the other work, and any other inquests that happen alongside it.

I had to record a video for the application that I filmed on my laptop in a Travelodge in the middle weekend of Danny Tozer’s inquest. It was private up until now but I’ve just made it public and you can watch it here if you’re interested in knowing more about why I think this work needed funding. It includes some brilliant tweets that I lifted from the twitter archives that capture the importance better than I can, so thank you for those contributions.

So that’s all my news just about caught up. Thank you to all my wonderful crowdfunders. Thank you to those of you who have supported with your words, tweets, emails and general recommendations. Most of all thank you to those families who have trusted me with their experiences, I do honestly believe that the more we expose the lives and deaths of learning disabled people, the closer we’ll get to changing things.

One comment on “Six months of crowdfunded #OpenJustice work”

Nikola Matulewicz-Evans says:

Thank you for your dedication and commitment. The only reason I still have a shred of faith in humanity is because of you and people like you who are willing to put your heads above the parapet.

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