What is this?

This site is designed to support my work as a 2017 Winston Churchill Memorial Trust Fellow.

Throughout this fellowship, I have a number of objectives:

  1. 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
  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 in turn reduce premature mortality of learning disabled people / people with developmental disabilities
  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, 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 am hoping to 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 are not what other options are available to them.

I will use this site to support my work and document my progress. I will attempt to 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.

 

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 am 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 am I going?

Where have I been?

Updates

Giving thanks #WCMTLD

5th October 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

29th September 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

28th September 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

23rd September 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

19th September 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

18th December 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

17th December 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

12th December 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

11th December 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

7th December 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

3rd December 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

2nd December 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

1st December 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

27th November 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’

24th November 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

23rd November 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

22nd November 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

21st November 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

20th November 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

17th November 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

16th November 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

15th November 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

14th November 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

13th November 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

12th November 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

30th October 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

23rd October 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 […]

Dates and Places

Brisbane

December 2nd, 2017 - December 5th, 2017

Dunedin

November 26th, 2017 - December 1st, 2017

Edmonton

September 26th, 2018 - September 30th, 2018

Hobart

December 10th, 2017 - December 12th, 2017

Melbourne

November 19th, 2017 - November 22nd, 2017
December 6th, 2017 - December 9th, 2017

Orillia

Sydney

November 11th, 2017 - November 18th, 2017
December 13th, 2017 - December 18th, 2017

Toronto

September 19th, 2018 - September 27th, 2018
September 30th, 2018 - October 4th, 2018

Wellington

November 23rd, 2017 - November 25th, 2017