Involving families in investigating the deaths of learning disabled people
The Report
The final report summarising my observations, reflections and learning from my 2017 Fellowship is now available to download and read. I would like to take this opportunity to thank everyone who helped with my Fellowship, who agreed to speak with me, or introduced me to people, or opened their homes to me. A special thank to Winston Churchill Memorial Trust for recognising that this was an important issue, and funding my Fellowship.
The Film
A short film where I present the executive summary and key findings can be viewed here:
What is this?
This site was designed to support my work as a 2017 Winston Churchill Memorial Trust Fellow.
Throughout this fellowship, I had a number of objectives:
- To see first‐hand how deaths of learning disabled people/ people with developmental disabilities in Canada, Australia and New Zealand are investigated with a focus on the involvement of bereaved relatives and families
- To liaise with policy makers, disabled people, advocates, academics, journalists and legal professionals to understand their roles in learning from and preventing premature deaths
- To gain a detailed understanding of actions key players could take to improve experiences and in turn reduce premature mortality of learning disabled people / people with developmental disabilities
- 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
- To improve practice by sharing final report with bereaved relatives, disabled people and campaigners, academics and the media, and those with a duty to investigate and prevent deaths.
Background
In July 2013 Connor Sparrowhawk, a learning disabled 18 year old with epilepsy, drowned in a bath in an NHS hospital. The trust responsible, Southern Health NHS Foundation Trust, claimed his death was due to natural causes.
This is not uncommon. The 1.14million learning disabled people in the UK die on average 24 years prematurely and their deaths are often ignored by society, the media and the NHS.
Throughout this fellowship I hoped to look at whether families were involved in the investigation of the deaths of learning disabled people, if they were how that happened, and if they were not what other options were available to them.
I used this site to support my work and to document my progress. I incorporated 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.
Who am I?
I am George. I have worked as a family representative and advocate on a number of independent investigations and reviews into deaths in healthcare provision, and was volunteer campaign manager for JusticeforLB (the campaign seeking accountability following Connor’s death).
In 2016 I worked as a special advisor to the Care Quality Commission’s national review into the way NHS trusts investigate and learn from deaths.
Where have I been?
Updates
Giving thanks #WCMTLD
October 5th, 2018
I’m just back in the UK, waiting for my train and the final leg home. Toronto Pearson airport was absolutely rammed last night, this weekend is Canadian Thanksgiving. I’ve got so much I’d like to blog about still but for now I wanted to post a quick post of thanks. One of the absolute most […]
Canada: Week Two
I arrived back in Toronto late on Saturday and now am writing this final post on Thursday evening from the airport, waiting for my flight home. The last few days has felt like a bit of a whirlwind, I feel like I’ve blinked and the time has gone. It’s been amazing though. Sunday was a […]
Three days in Edmonton
September 29th, 2018
I’m sat in Edmonton airport writing this and my mind is on overdrive, so many thoughts, ideas and reflections buzzing around my head. I had a far too short trip to Edmonton (which is my responsibility entirely) but am glad to have met with the people who kindly made time for me. I’m also very […]
Surviving Huronia
In my last post I mentioned that from 1876 to 2009 thousands of children and adults with developmental disabilities/learning disabled people lived in the Huronia Regional Centre institution at Orillia. I also stated that the abuse and neglect they were subjected to was utterly dehumanising, life altering and in some cases life ending. In 2008 Marilyn […]
Canada: Week One
September 28th, 2018
I’ve chosen not to write blog posts daily on my Canadian leg of this trip, instead I’ll do a post every few days. I flew into Toronto a week ago on a fairly turbulent flight due to wind and jet streams. I was productive on the flight, met a few deadlines and was excited to […]
Phase 2: Canada
September 23rd, 2018
I started this post on the airplane to Canada and have only just got around to posting it a few days later. I’m lucky enough to have two weeks in Canada, I start in Toronto, before spending 4 days in Edmonton and then return to Toronto for my final days (which includes a one day […]
2018 Update
September 19th, 2018
It’s 9 months since I returned from Phase 1 of my WCMT travels visiting Australia and New Zealand and I’m preparing for the start of Phase 2 in Canada. This post will capture a few of the developments in the UK in the last year. I’ve live tweeted two more inquests of learning disabled. Richard […]
So long Sydney
December 18th, 2017
This will be my final blog post from Antipodean soil. I had a few days in Sydney before flying home and managed to cram in some social and some craftivism, as well as in person meetings at Sydney Children’s Hospital and the Clinical Excellence Commission and two phone meetings, one with a bereaved family member […]
Phase 1 #WCMTLD craftivism
December 17th, 2017
My penultimate day in Australia and I had the absolute joy of a day with Aine and Eddie. We met in the city and got the ferry across to Cockatoo Island. We scooted and wandered around taking in the old industrial sights, and the more contemporary, it’s currently being used for filming a new series […]
A hop to Hobart
December 12th, 2017
Why are you going to Tassie? It’s been a frequent question on this trip and I’ll be honest I did start asking myself the same question when I realised the distance I was travelling for 2.5 days. When it came to planning my WCMT Fellowship I knew I wanted to visit the countries I’m visiting […]
Magical Melbourne Part 2
December 11th, 2017
Last week started in Brisbane and I flew back to Melbourne on Wednesday. Wednesday evening I met John Chesterman, Director of Strategy and currently Acting Advocate, at the Victorian Office of the Public Advocate. John was one of the first people I contacted when planning my WCMT travels as he himself is a former Australian […]
A Brisbane bonanza #WCMTLD
December 7th, 2017
I’m at the stage in my trip where my motivation to blog daily is waning a little. A lot of what I’m hearing is reinforcing what I’ve already been told, and I’m taking copious notes whenever I meet someone, however the heat in Brisbane (it was hot, very humid and damp – a little like […]
Dying to matter #WCMTLD
December 3rd, 2017
I spent today, International Day of People with Disability 2017, in Brisbane. Well that’s not strictly true, I spent some of it in Brisbane, some of it travelling to the Gold Coast and a significant chunk of it having an incredibly pleasurable lunch and walk on the beach/paddle in the shallows and chat with Sally […]
A round table and a sniff test
December 2nd, 2017
During my very limited time in New Zealand (10 days, not nearly enough) I spoke to a number of people about investigating the deaths of learning disabled people and improving their access to healthcare. I asked all of them the same question ‘who should I be speaking with to find out about academic research in […]
#DisabilityMattersOtago
December 1st, 2017
I wanted to record some random thoughts generated through the exceptional Disability Matters Conference. You can visit the conference website here and see what was covered. I can honestly say its been a long time since I’ve been at such an eclectic and authentic conference. The three days brought together disabled people and self advocates, […]
A New Zealand weekend
November 27th, 2017
So it’s Monday evening and I’ve not blogged since Friday so I’m going to do a quick post on my weekend as an aid memoire of the end of my time in Wellington. It was a busy week last week, split between Melbourne and Wellington, and I knew I only had one day in Wellington […]
‘To date, done nothing with this information’
November 24th, 2017
Day 14 of my #WCMTLD trip and only Day 2 in New Zealand but it really feels like time is flying by. Today was a bit of a blur of meetings, walking to meetings and discussing how the deaths of intellectually disabled people are investigated in New Zealand. First up I met with Claire and Martyn […]
Look backwards to go forwards #WCMTLD
November 23rd, 2017
My first day in New Zealand today and it’s been great for setting the context. First up I met with Esther Woodbury from the Disabled Persons Assembly New Zealand followed by Cindy Johns from People First New Zealand (who I forgot to photo). Both disabled people’s organisations form part of the coalition of DPOs who […]
Learning Disability Nurses Webchat #WeLDNs
November 22nd, 2017
Today was a day of downtime, the meetings I’d hoped to pull off didn’t happen so I had some much needed nothingness before a flight to New Zealand. Last night I caught the tram down to St Kilda to see the fairy penguins, the most gorgeous sight. I didn’t even think I particularly liked penguins, […]
Understanding what good looks like
November 21st, 2017
Day 11 #WCMTLD and it was an early start and a bus ride up to La Trobe’s Bundoora campus for a 9am coffee with Professor Chris Bigby. Chris is the Director of the Living with Disability Research Centre. A unit committed to not just conducting good quality research, but also to translating and applying that […]
Acknowledge, answer, action, apologise
November 20th, 2017
Day 10 #WCMTLD today, feels like time is flying by. Today I visited the Office of the Disability Services Commissioner (ODSC) in Melbourne. I got to spend time with their Systemic Review Team, who are a very newly formed (still forming) team charged with looking into reviewable deaths. The Disability Act 2006 was amended in […]
Melbourne meanderings
I took the weekend off from blogging and just enjoyed taking in the rays, wandering the city (I flew down to Melbourne from Sydney on Saturday afternoon), people watching and musing on what I’d heard and thought from week one of #WCMTLD. I know I’ve already said it but I feel so totally and utterly […]
New approaches to preventing deaths needed
November 17th, 2017
Last day of my first week in Australia, Day 7 of #WCMTLD. I had left my diary clear this morning which I was exceedingly grateful for, my head is buzzing with ideas and reflections and it was good to spend a couple hours in another cafe, Scout’s Honour with a stunning breakfast and some time […]
A reportable incident
November 16th, 2017
Day 6 in Australia today and I spent the day at the New South Wales Ombudsman’s office for a training workshop Handling serious incidents in the disability sector. The workshop looked at handling allegations of abuse and neglect in a disability service setting. It covered: Identifying serious incidents – the legislative and policy framework Planning and […]
Gathering perspectives #WCMTLD
November 15th, 2017
I’m not sure whether it was coffee consumption, nerves/excitement about today, jetlag or something altogether different but I didn’t get a lot of sleep last night. I woke feeling a little jaded and stumbled across the road to the cafe for breakfast. Turns out avocado on toast is like the food of superheroes, I felt […]
A cornucopia of coronial wisdom
November 14th, 2017
Pinching myself today, that I’m in Australia, spending dedicated time looking at learning from deaths. Feels somewhat surreal, a real privilege and a huge opportunity. I’ve deliberately kept my focus broad during this trip, trying to combine multiple perspectives, as much as it’s tempting (and possibly safer) to go deep on just one issue, I’ve […]
NSW Ombo and Aine’s walk and talk
November 13th, 2017
Day 3 of #WCMTLD today and my first day of face to face meetings. I spent the morning and early afternoon at the New South Wales Ombudsman‘s office, talking with Kathryn McKenzie their Disability Director and team members from the reviewable deaths team and the disability reportable incidents team. One thing I hadn’t expected was […]
A Sydney weekender
November 12th, 2017
All work and no play makes Jack a dull boy…. and George a very grouchy and overly analytical girl, so luckily for me I arrived in time for the Sydney weekend. The timing of my trip was set up around a work event, the JusticeforLB book launch and the JusticeforLBGMC tribunal (I rejigged slightly to […]
First stop Sydney #WCMTLD
October 30th, 2017
A few people have been in touch since I shared this site asking what I am doing and who I am meeting in Sydney. I’m still seeking bereaved family members to connect with (more info here) and have some time set aside for those meetings, and any other opportunities currently unplanned that might crop up. […]
Phase 1: Australia and New Zealand
October 23rd, 2017
I can not tell you how lucky I feel to have been given the opportunity of a WCMT Fellowship. The chance to travel, to meet people and to spend time exploring an issue that has been a backdrop to my life for the past few years. I am ridiculously excited and very humbled. You can […]