Twitter, indulge me in a quick trip back down memory lane would you please. I'd like to talk a little about two beloved young men who died in the care of @Southern_NHSFT and the wider response to their deaths by our beloved #NHS, Connor and Edward

1/
Connor was a comedian, unofficially anyway, you can read his mum @sarasiobhan's blog for some highlights, start at the beginning, back before all the shite mydaftlife.wordpress.com/2011/05/26/the….

Sara documented family life, her disastrous travel adventures and LB's brilliance

2/
LB I hear you ask, it was an anonymous blog, LB was Laughing Boy, Connor, hence @JusticeforLB

If you'd like to know more check out Sara's first book uk.bookshop.org/books/justice-… or you can watch this brilliant 15min video from @mylifemychoice1 vimeo.com/130521001

I'll precis
3/
Connor loved buses, he loved London, he dreamt of running his own haulage company and his favourite haulier was Eddie Stobart.

He lived in Oxford with his family, in a house full of laughter, there was a lot of (highly infectious infectious) laughter justiceforlb.org/faqs/

4/
When Connor was 18 he started to get anxious, desperate for support his family looked for (non-existent) help.

[As an aside I reported on this court case in the same area last week, in Oxford, so it looks like not much has changed ].

5/
Connor was admitted to an 'assessment and treatment unit' run by Southern Health, in Oxford. There was precious little (no?) assessment or treatment and #107days later LB drowned in a bath, in a hospital, in July 2013.

Connor had epilepsy, autism, and a learning disability

6/
Sara had been warning staff about Connor's epilepsy. They hadn't just not understood, they'd wilfully ignored her.

What followed was as an epic fight. Determined to get answers and accountability @sarasiobhan and thousands of others campaigned for #JusticeforLB

7/
It was exhausting, relentless and heaped trauma (on top of unimaginable trauma) for Connor's family.

A death classed as natural causes, then painted as a tragedy, later we heard Southern Health brag they weren't an outlier in not investigating learning disabled ppl's deaths

8/
#JusticeforLB was also joyous at times, but you need to read Sara's book to learn more about that.

In terms of #NHS response it was denial and cover up from day one.

A briefing published on @sarasiobhan's social media activity the day after Connor died; focus reputation

9/
Connor's family weren't giving up though. They fought and fought to ensure Connor's death, and the premature and preventable deaths of learning disabled and autistic people, was known about. To demand better. To find answers.

It was never just about Connor for them.

10/
Following Connor's death there were two Verita 'independent investigations' commissioned by the NHS, there was the Mazars report into deaths in Southern Health care and the CQC Deaths Review as a result of that, and eventually a HSE prosecution @JusticeforLBHSE in March 2018

11/
The HSE prosecution issued a record fine of £2million as it became clear that the Trust had ignored expert health and safety advice and chosen not to make changes to ensure care was safer.

You can read the judgement here judiciary.uk/wp-content/upl…

12/
Southern Health were prosecuted in relation to the deaths of Connor, and another person Teresa Colvin who died in April 2012, a year before Connor theguardian.com/society/2018/m…

Teresa died in 2012, Connor in 2013

So what has this got to do with Edward I hear you ask?

13/
Edward's favourite song was DJ Otzi’s Hey Baby, he'd play it on repeat and sing along.

Edward loved food, blonde haired girls, fast cars, noisy engines, combine harvesters, rainbows and the colour yellow.

Edward was his school Prefect for Happiness and Harmony

14/
Edward lived in Winchester with his family and he was also just 18, also still a school boy, also receiving care from Southern Health when he died, ten months after Connor justiceforlb.org/edward-a-prefe…

15/
Edward died of cardi-respiratory failure following an epileptic seizure in his own bed at home, not witnessed by the Southern Health Carer employed to monitor Edward for seizures.

The Carer had not checked Edward for 2.5 hours before he checked him just before 8 am.

16/
On finding Edward the carer didn't call for an ambulance or attempt CPR, didn't do anything, just went into shock.

It was left to Jane, Edward's mum, to call for help and attempt CPR on her lifeless son. She described how not doing so 'wasn't an option'

[Can you imagine]

17/
Jane and Ian Hartley, Edward's parents, similarly starting campaigning for answers and accountability.

They also attended meetings, workshops, Board and AGM Meetings.

They did everything they could to improve things for others.

18/
They worked with @Southern_NHSFT on Clinical Services Strategy patient and service user input. Attended the CQC Learning from Deaths workshop and conference.

'Anything to promote the necessary change in culture to allow for honesty and transparency to be the accepted norm'

19/
There's always been direct contact between the families bereaved by Southern Health, and there are hundreds of them.

When the HSE prosecution was on Jane shared with @JusticeforLB some of her correspondence with the Trust, you can see more justiceforlb.org/edward-a-prefe…

20/
Jane and Ian were 'waiting for the necessary shift in culture within Southern Health to enable a joint review (ourselves and SHFT) of Edward’s care and death'.

This was in Sept 2017 after the Trust had pleaded guilty to HSE charges

21/
The Hartley's were also aware of the risks of engaging:

'Co-producing a factually honest account to ensure failings are not repeated and the second harm created by toxic behaviour to bereaved relatives ceases'.

Jane was clear on what needed to happen.

22/
'We have always felt we cannot get anywhere until the culture within @Southern_NHSFT changes. We know what happened as I was there and we believe this is unique in that respect. We need SH to realise that they are not defining an event where no other witnesses were present'.

23/
Just have a think about that for a minute.

Jane Hartley, Edward's mum, was there when he was found.

It was Jane who called for help. It was Jane who attempted CPR.

Yet the Trust were trying to write an account of what happened that was wholly inaccurate

24/
Jane continued 'The change in culture has not happened as yet. The rhetoric that they have changed cannot be demonstrated and ours is a case in point'.

This was 3 years ago.

So has anything improved? Nope, it's got worse.

25/
Since the HSE prosecution Ian and Jane Hartley have continued to engage further in working with @NHSEngland on a review owned by @CNOEngland and conducted by Nigel Pascoe QC

Despite their reservations.

Despite their fears.

26/
Despite knowing of the dangers of being re-traumatised and abused by the NHS investigation processes.

Last week they’d finally had enough. Jane and Ian Hartley, alongside four other families, withdrew from the latest farcical process.

27/
The five families published a blistering joint statement described being misled, misrepresented, gaslighted and bullied.

You can read it in this thread here

28/
So there we have it, two bereaved families, two relentless campaigns for answers and scrutiny and improvements for others.

It appears it makes no difference what approach you take, to rally against the system, or to put your fears aside and work closely with it.

29/
You’re still just eaten up and spat out, brutally abused and traumatised, and harmed further still.

In an interview last week Jane Hartley described Edward’s memory being ‘sullied’ by the behaviour of @NHSEngland @CNOEngland and @Southern_NHSFT

30/
Can you begin to imagine what that must feel like?

You can read more about that interview with @jamesingham here

31/
Last year my @wcmtuk report was published. It looked at the experiences of bereaved families in investigations into the deaths of learning disabled people in Australia, Canada and New Zealand.

You can access it here if you’re interested wcmt.org.uk/fellows/report…

32/
There is so much of relevance but three key reflections:

1) Investigations are most meaningful for families when they are timely, robust and genuine in their intent to bring about change

33/
2) Immediate action should be taken to reduce additional harm caused to bereaved families by processes of death investigation

3) Investigations without improvement are unethical

34/
Four years ago, in Dec 2016, I wrote a review of family experiences of NHS death investigation processes as background for the @CareQualityComm Death Review.

You can read that here
georgejulian.co.uk/wp-content/upl…

35/
We’ve known what needs to change for long enough.

The wilful refusal of the NHS to truly listen, engage and respond to bereaved families is exactly that, wilful.

The choice to re-traumatise bereaved families by this performative scrutiny is nothing short of abuse.

36/
And for anyone who thinks this is a niche Oxford/Winchester @southern_nhsft thing, it's really not.

There are thousands, of bereaved families trying to get answers out of the #NHS

Covid is only likely to lead to more

37/
The brutal abusive process is something you couldn't truly believe unless you'd seen it with your own eyes.

The families that withdrew last week, that was in part because @CNOEngland had indicated the 'learning' from this process would feed into covid inquiries.

38/
There is no learning. That's the whole point. It's performance, and it's harmful, and enough is enough.

I’ll leave you with the words of the families as they withdrew from the process last week. With thanks to @bbcmbuchanan and @jamesingham for media coverage:

39/
'We must remain true to our cause and in honour of our lost loved ones refuse, through our participation, to legitimise the charade that this hearing has become'.

For Edward, Marion, Jo, Robert and David.

For Connor.

For the thousands of others.

/END

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More from @GeorgeJulian

1 Nov 20
Thinking of Paula Rawnsley and all of Thomas's family and friends today. Thomas died in February 2015, coming up to 6yrs ago.

Last September I was in Sheffield Coroner's Court with Paula on Day 2 of his inquest when it was adjourned for more expert evidence.

1/LONG THREAD 25+
I just want to talk a little bit about Paula and her search for answers about what happened to Thomas. Paula told me that she had already been labelled as difficult way before Thomas died.

Thomas was a much loved youngest brother and enjoyed a happy childhood at home

2/
As a teenager Thomas became more anxious and Paula asked for support to keep him at home.

She thought maybe they could get some respite help, or some advice. Thomas used Makaton to communicate and was able to make most of his needs known to those he knew well

3/
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9 Oct 20
Gather round twitter, I've not done a post like this for a while, but I'd like to introduce you to Jared.

Last week I spoke to Jared's mum, Vicky, and wanted to share some of what she told me, and let you know how you can help #JusticeforJaredB 1/29 A boy wearing a pink tie and waistcoat and a white shirt smi
Jared was Vicky's first born, arriving on 20 February 1994. Vicky was a young mum, only 19, but very excited for the future.

Jared was a perfect baby, he didn’t cry a lot, he slept and fed well, but at his 6mth check-up there was concern he wasn’t putting weight on. 2/
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Read 29 tweets
3 Sep 20
Spent day reading PFDs (Prevention of Future Death) reports and associated stuff. So disheartening to see same issues crop up repeatedly. Am gonna share one lowlight, whilst recognising these are only written due to ongoing concerns after someone has died..
so really they're all lowlights. In my experience NHS Trusts and care providers will do *anything* to avoid being issued a PFD, it's like reputation is all that matters.

I'd like to share about John Gregory, he was 93 when he died in October 2019 judiciary.uk/publications/j…
'Mr Gregory died because he had not been drinking enough, though his Alzheimer’s was not end stage, and before he was admitted to hospital he had been mobile; able to wash, dress and feed himself; and enjoy a good quality of life'
Read 43 tweets
29 Jul 20
Just connected to court for the #CovidSEND judicial review case [It's very echoey, legal teams are in court, a number of people attending remotely through Skype]

Background thread here

I believe those in court are listed in attachment.
@polly_sweeney of @scottmoncrief, @SteveBroach of @39publiclaw and @AliceLIrving for claimants Amber and @1985Deanne Shaw and anonymous claimant ABC thru XYZ

@sarahhannett and Nathan Roberts of @matrixchambers and Mark Davies of @6PumpCourt for defendant SOS for @educationgovuk
As far as possible I will tweet word for word what is said, if not possible due to speed I'll paraphrase. I'll offer no analytical commentary, I'm simply trying to facilitate #OpenJustice thru live tweeting to a wider audience #CovidSEND
Read 629 tweets
29 Jul 20
I'll be live tweeting #CovidSEND judicial review for the next two days from the High Court of Justice, Queen's Bench Division Administrative Court sitting in front of The Hon Mr Justice Kerr.

Case is brought by @1985Deanne and Amber Shaw (pictured) and an anonymous claimant

1/
Claimants challenge SOS @educationgovuk @GavinWilliamson's decision to modify legal duty under S42 Children and Families Act 2014 #CovidSEND

This places a duty on local authorities to secure provision to meet special educational needs and health needs as set out in an EHCP

2/
EHCP = Education, Health and Care Plan.

According @educationgovuk 354k children and young people had an EHCP in 2019 assets.publishing.service.gov.uk/government/upl…

Thousands of families affected by the SOS decision to replace the duty with requirements to use 'reasonable endeavours' #CovidSEND

3/
Read 26 tweets
16 Jul 20
I don't have the stomach to tweet this yrs Leder report bristol.ac.uk/media-library/… I barely have the stomach to read it. I'm just going to highlight coroners and inquests.

Only 37% of learning disabled people lived beyond the age of 65 in 2018 (85% of general population did)

1/16
I can't wrap my head around that. 63% of learning disabled people die before their 65th birthday, only 15% of non-learning disabled people do.

My gut suggests many more deaths of learning disabled people should therefore be reported to the coroner... that's logical right? 2/
'Of the 1,946 deaths of adults with learning disabilities for which a review was completed in 2019, 32% were known to have been reported to a coroner, a substantially smaller proportion than the 41% of adults and children in the general population who died in 2018' 3/
Read 16 tweets

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