I also set up a page for one off payments if ppl would rather that to monthly
Pls DM me for details for monthly payments if you'd like to make one. Thank you all and thank you
@amandapalmer
#love
#OpenJustice
Devastated to share that my Mum, Sylvia, died on Monday. I'd like to tell you a little about her... gather round tweeps, if you like.
Mum was quite a private person, didn't think anyone wld be interested in hearing about her, but I need the world to know how awesome she is 1/17
I feel like my world has tilted, it will never be the same again. Mum was at peace when she found out she was terminally ill and very relieved to eventually be out of pain. She spent her last few months telling people she loved them. We should all do that more often
/END
Barbara West was 64 when she died from
#Covid19
. Her sister Frances has shared a tribute about Barbara here
My dear sweet precious sister Barbara is now in heaven. At the ripe old age of 64 years old.
After a short stay in hospital Mum came home in October. Her health declined relatively quickly, but this photo was taken in November, eating brownies and clotted cream at her beach hut 14/17
A year ago right now I was lying on my Mum’s bed, holding her hand and talking to her as she spent her last living, breathing hour on this earth... I wanted to share a post about
#candour
, the power of it, and the impact it had on Mum’s life, and mine
Mum got her wish to die at home, in her own bed, overlooking Torbay in what had been her home for almost 50 years.
It was a total privilege to help Mum achieve that, as she had done for our Dad in 2012 and our Gran, her Mum, just a few years ago 15/17
When my Gran died I bought her house, next door to Mum and the house I grew up in, always knowing I'd care for Mum at the end of her life, but not for a minute thinking it would be so soon. Life is fleeting, we all know that, use your time wisely tweeps 16/17
'Hello' she said quietly 'I don't suppose you'll remember me?' Puzzled the woman admitted not. Mum continues 'You told me 25 years go that I was a neurotic mother... I'd just like you to know that I was not neurotic and in fact my son was dyslexic'.
Oooooof 8/17
My brother, sister and I grew up with the confidence of kids loved unconditionally, firmly believing we could do or be anything. It was only later in life I realised that not everyone has that. What my parents lacked in money they made up for with time and love 3/17
Sorted mum’s clothes with sis this morning; emptied her beach hut this evening. Disposing of a body is relatively easy but everything else, feels like dismantling the essence of someone, brick by brick, blow by blow. It’s bloody hard, still can’t believe she’s dead
#grief
Seven years ago today Connor Sparrowhawk died; what a legacy his family and friends have crafted
@JusticeforLB
but what a loss. Thoughts with the dude of all dudes today
#JusticeforLB
I'd like to say the woman apologised, but she didn't really, but that was fine, Mum had her peace and she left that day lighter... but what a woman to have carried that for 25 years.
My Mum felt things deeply and she hated injustice 9/17
My Mum was the best human I knew, she was kind and generous, tolerant and loving, the walking definition of big hearted. As a child I thought my parents were quite strict (they were) but as an adult I realise how great they were 2/17
Years before anyone had dreamt up intergenerational activity programmes my Mum would take us to visit her clients in nursing homes, we'd bake Easter nests to share, or go singing carols at Christmas, or just go to visit and talk to them 5/17
My Mum was a great cook and there was always enough for anyone who needed a meal.
On several occasions she'd bring someone home from church for a christmas dinner, she couldn't bear to think of someone being alone or going without 6/17
That is also her story behind the patch she stitched for Connor's
@JusticeforLB
quilt; while just as applicable to all those who failed him.
Mum supported
#JusticeforLB
but really struggled with how horrendous people behaved, to Connor, but also to his family 10/17
My Mum worked as a probate executive, writing wills and looking after old people's affairs. It meant that we were always quite open about death in our household, indeed some of Mum's closest mates were undertakers 4/17
I've so many thoughts about the culture of celebrity and its impact on shaming government into action. I've stayed silent until now, not sure what my voices adds.
My skin itches and my heart aches when I hear some of the language used to describe learning disabled people
1/16
My Mum was so awesome, she was a great cook, an amazing gardener, an avid reader, a 'furious' knitter and a friend to many. She loved being a grandma to my nieces, and many of her happiest memories in recent years were times at her beach hut with them both 12/17
I remember Mum stopping in her tracks in Sainsburys about 10years ago... when I asked what was wrong she quietly said, there's just someone over there I need to speak to. Intrigued I tagged along as she walked up to this fierce looking woman in the freezer aisle 7/17
Each inquest I live tweeted Mum would say that she wasn't going to follow this time because it was too upsetting.... but then invariably she'd message at the end of Day 1 to let me know what she thought. She couldn't not 11/17
A reminder that while no public body could give any fecks about sharing the impact of
#Covid19
on learning disabled people, I'm tracking all UK deaths of all learning disabled people since 1 March 2020
Please share far and wide
#LearningDisability
My Mum was the best. As kids she’d take us to pick primroses on Good Friday, distributed with chocolate nests to people in local care homes. When she knew she’d not live to see spring we planted crocus and tulip pots for the neighbours, this week the tulips are emerging ❤️
25 years. Waiting.
I just can't.
What is wrong with us/our society, that learning disabled people are being held in hospital for longer than some people are held in prison after being found guilty of murder.
34 years in hospital, 25 years waiting for "the right support"
Today she had a huge stroke and her time here is done. Abi and I cuddled her as she left us, I'm not sure on what (if anything) is beyond this realm, but like to think in some ways she's reunited with Bobby and Sylv tonight.
Rest easy Stelly pups, you were the best girl.
/END
Mum started having problems with her shoulder 18 months ago and was eventually offered a shoulder replacement op. While planning that they discovered her shoulder had been replaced by a dirty big tumour that had already spread to her ribs and brain 13/17
Yesterday this
@WMPolice
Officer was in court... last night WMP decided to flood their social media with
#24HoursInCustody
tweets, what convenient timing.
Tweets including mocking people in mental health crisis. How is this an acceptable use of social media?
1/6
In this C4 News exclusive footage, this is the moment police officer PC Oliver Banfield violently attacked a woman walking home at night in 2020.
She faced an uphill battle to get justice from the police forces involved.
It's 5 years today since LB died, I'm going to spend the day revisiting and sharing some of the
#JusticeforLB
wonder that Connor inspired.
Have to start with one of my fave LB stories tho
Nope, they’re not heroes, same as NHS staff aren’t heroes.
They’re workers and should be paid properly for their work and then you wouldn’t have trouble recruiting people in the first place.
"Care professionals are heroes, working hard every day to look after some of the most vulnerable people in our country. I want to celebrate their contribution, and encourage more people to join this important and rewarding profession." – PM
@Theresa_May
#everydayisdifferent
Today the best human I ever knew should have turned 77, she’s not with us any more but I’ve mostly let go of the anger about that, helped enormously by her GP’s candour, old post here
Happy birthday mum, it’s gorgeous down your hut today 💔
This is it, the sole tweet from Professor
@sarasiobhan
’s inaugural lecture from me; can’t live tweet this one, just going to sit back and enjoy
#JusticeforLB
If one was born in the afternoon is it legitimate to extend one’s birthday celebrations into the following morning and eat cake for breakfast?
#AskingForAFriend
#SorryNotSorry
Twitter, I'm afraid I've another utterly harrowing and heart breaking tale to tell you, but I hope you'll read, reflect and share. It's so important. You can read it all here, but I'll thread some of it too
Connor Wellsted: our boy for ever more
1/25+
Happy birthday Sammy
Today is Sammy's 15th birthday. His mum
@PAlbanStanley
and sisters would like to invite anyone who cares to join them in lighting a candle for Sammy tonight at 7pm.
I thought some who followed
@SammyInquest
might like to 🕯️❤️ pls RT
Just going to leave this here and shut the laptop for the evening I think.
Love this. David looks so proud and his reaction to the lifetime gift is priceless. This is what community looks like.
@Ashington_FC
is deep in my uncles heart, he loves the club the players and the fans. being able to help the club on matchdays selling domino cards and singing from the stands makes him proud as owt!
I cannot explains what this presentation and gesture from the club means to him
So, this happened
Humbled my
#OpenJustice
work has been recognised and featured on the
@nesta_uk
@ObserverUK
new radicals list.
Learning disabled people are currently dying 20-30 years prematurely and many of these deaths are preventable
<more follows>
Today is Sammy’s 14th birthday but he is not here to celebrate it. I’ve been speaking with his mum, Patricia, and this morning I spoke to his sisters and promised that I would share about Sammy so more people know of him. They fear he’ll be forgotten
My lovely Mum should have celebrated her 75th birthday today; if the planets had aligned differently.
Worked from 5-9am and spent the rest of the day in a head funk clearing her house… some days missing her physically hurts. She was the best.
Slides discovered few wks ago ❤️
#LDWeek
is for raising awareness and busting myths.
I present to you a dose of revolting reality.
I spent the weekend revisiting Transforming Care, and the industry around it.
Over a decade of performative scrutiny and no meaningful action or progress.
Buckle up.
1/20+
Evening twitter, sorry this is a long thread and I'll warn you now, there's no happy ending. But it's important. Please read and RT.
Gather round, grab a brew, maybe a blanket, settle in and please let me introduce you to Christina, or Kristy as her family called her.
1/23
Last year when I asked for ££ to support my
#OpenJustice
work I promised I'd let people know what it was spent on once a year.
Here's the 2018-19 recap
Thank you to every single person who has donated or shared my tweets. I couldn't do it without you.
Hello tweeps, i'm just swinging by to let you know that the inquest into the death of Sammy Alban Stanley starts tomorrow at Kent Coroners Court.
I'll be live tweeting on
@SammyInquest
.
Please let me introduce you to Sammy
1/
I cant stop thinking about the people stuck in the homes in the
@CareQualityComm
reports I read.
Can't turn my brain off to it.
How is it that learning disabled and autistic people have fewer human rights than others?
Rights to freedom, family life, liberty? Cast aside
Dreading selling mum’s house and it maybe being bought by a non-gardener. Picked these for my sis today, three from my garden, all others from mum’s. No two the same. Trying to capture photos of what mum grew
#roses
#nurture
#notagardenerbuttrying
My soul is tired… so so tired.
Anyone who thinks
#RoeVsWade
is a US issue is sleepwalking into the UK’s future.
Anyone who fails to spot the connection with the removal of the
#HumanRightsAct
and the
#DSBill
is wilfully blind.
Only joy this morning is my scarf 😻
My lovely Mum should have been 74 today; still can’t believe she’s not, what I’d do to give her a hug.
Little sis made this lush card; ears are mum’s PJ fabric and nose from a dress I made her ❤️
Looking at photos, trying to remember happier times but (lockdown) grief sucks.
Gather around twitter, its been a wee while since I've done a thread like this, but I'd like to introduce you to Peter Seaby before his inquest starts next week
@PeterInquest
Full blog version here:
Peter Seaby hated carrots
1/
I am desperately seeking the joy at the mo; every fibre of me is scanning for it all the time, I give you exhibits a-c from my trip home from the shop:
a) best window art ever
b) my first tomato (surely too early?)
c) my hydrangea changing colour
#NotAGardenerButTrying
I have so much to say re
#WhorltonHall
trial, but I'll save it until after defendants found guilty are sentenced in early July. I need some space from it, time to think and reflect.
So to end for now, in this thread I'll list the proven charges:
#LearningDisability
#Autism
1/
That’s me done with masks, 45 sewn and sent to friends, family and local NHS nurse I went to school with. They’re tedious and fiddly but glad to have managed a small gesture with my gorgeous duck egg blue singer I found on gumtree for a tenner last summer 🙌
#covid19
Why in the reporting of the need for learning disabled people to be vaccinated have the media failed to acknowledge the work of self-advocacy groups and campaigners that have been raising concerns about this for months now?
5/
I feel like I can breathe deeply for the first time in months.
So relieved at Coroner's finding at end of
@InquestLaura
yesterday. It should have been a given but it never is. Read more from
@tobithomas_
Also got the invite for my covid jab 🙌
Evening twitter, pls indulge me.
Stella, the best dog.
14yrs ago, end of 2008, my Dad, Bobby J was told he was in remission from the bile duct cancer he'd been fighting for a year
A former postman, my parents decided a puppy would be good to help him regain his fitness
1/14
I'm going to end with a pic from Mum's beach hut last year when my sister had suggested she was Mum's favourite and Mum had absent mindedly agreed - the outrage.
Give someone a hug for my birthday today. Keep spreading the love and hugs. I love you all.
/END
A self-indulgent thread about birthdays, rocking chairs, hugs and rhesus monkeys...
I woke early this morning, shortly before 6 and sat in the rocking chair that is now I suppose mine; admiring the view.
Today is my birthday.
My first without the woman who birthed me
1/15
In an attempt at self care I spent yesterday morning in the garden, pulling out wild garlic and weeds, very cathartic. Evening was spent finishing the final pair of mittens for this newborn twin welcome to the world pressie. How stinking cute are these, if I say so myself 👌👌
My neighbour’s sister also lives in our street and she prepared the funeral flowers, taking a cutting of something from each garden. She’s so clever.
It meant we were all there, Mum too in a way and I’m so grateful for that.
Community, it’s priceless.
/END
Someone please tell Matt Dunkley
@Kent_CC
preventable deaths aren't tragic, Sammy's death wasn't written in the stars, it happened as a direct consequence of failings in his care, by Kent LA and NELFT. Ditch the tragedy narrative please.
Here's a quick video update on Mrs Justice Arbuthnot's judgement in the Court of Protection that it is in William Verden's best interests to receive a kidney transplant.
I'll share a link to her judgement when it becomes available, and will blog later this week
#OpenJustice
Fern Foster's
@ElyssaLeopard
's inquest starts tomorrow. She was 22 when she died in July 2020. Her family hope her inquest will explore involvement of professionals in Fern’s life and child protection processes
t/w death self-harm
#WorldAutismAwarenessDay
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
To all the bereaved mothers out there, I see you.
Those of you whose babies died before birth, during, or shortly after birth. I see you.
Those who dreamt of motherhood and spent love and energy investing in it, but for whom pregnancy was not an option. I see you.
1/
My lovely mum's birthday today. I find birthday's the hardest days, I miss her so much. She would, should, be 76, if the planets had aligned differently.
Facebook reminded me I shared this William Martin poem 2yrs ago, I love it, so will share here:
1/3
We think they got away with murder, there’s no other way I can explain it
I'm rarely shocked these days, last week I spoke to Carol Shannon about her son Mark. I was dumb struck by some of what she told me, not at what happened, but at what didn’t happen.
Gather round twitter, you know the drill, grab a brew and a choccie biccie, and steal yourselves.
Please let me introduce you to Thomas.
#JusticeforThomasRawnsley
1/24
I've not been here for a few days but I'm back ahead of Laura Booth's inquest which starts Monday in Sheffield Coroners Court
Gather round, grab a brew and please let me tell you a little about Laura.
Please share and RT this thread and follow
@InquestLaura
for updates
1/25
Wow. I'm being given an Honorary Doctorate from Oxford Brookes for my role in the 'imaginative and sustained
#JusticeforLB
campaign'. Way to start the weekend.👊
I don't have the stomach to tweet this yrs Leder report 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
How can it be, an entire year into a pandemic a celebrity is tweeting for answers about how to help administer oxygen to someone in distress?
Why haven't Mencap already produced resources and guides and shared with their ambassadors?
What have they been doing?
4/
Delighted to open my emails after a long day to find confirmation of this.
Would have been/guess it still is my Dad's 74th birthday today and I know he'd have been insufferably proud about it.
I can't wait to see what we can cook up together 👊
Thinking of
@sarasiobhan
and all of Connor's family and friends on his 26th birthday,
and
@PinguG
@EmilyHandley_1
on the 8th anniversary of Richard's death,
and
@paularawnsley
as she makes her way to court for the coroner's summing up in Thomas's inquest.
We must do better.
How have I missed the outcry about this research? Ohhh, is it because there hasn’t been any?
Devastating article in the
@BMJ_Open
from researchers
@KingsIoPPN
Assad Baksh
@SarahPapey
James Smith and
@drandrestrydom
1/4
Six months of crowdfunded
#OpenJustice
work
I'm so excited to share this blog post. It includes news I've been waiting six months to receive... that I'll receive a
@phf_uk
Ideas and Pioneers Fund grant. Thankful to all my crowdfunders and supporters 👊
Will post family statement in due course.
Thanks to my crowdfunders, I could not report without you. Not sure how many more inquests I've got in me. So much sadness and loss, so little improvement and change
Rest in colour Jessie
/END
The conclusion of the jury that systemic failures in health and social care led to a series of events which caused the deceased periods of dysregulation culminating in regular bouts of self-harm, which ultimately ended in her death by misadventure
1/3
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+
This week I'm in Manchester for
@JoeInquest
which starts today. A few weeks ago I was contacted by Joe's brother and asked if I were available to live-tweet his inquest. When he told me what had happened I knew I had to, even tho
#JusticeforCol
has only just finished 1/11
Hey Tweeps, it was my 13th
#twitterversary
this week so I recorded a video bcos I’m too tired to blog
[Video transcript below]
Hello, so this week Twitter sent me a tweet, to tell me I’d been here for 13 years and it got me thinking and I thought I’d do a little recap.
1/13
Super moody Torbados today. Me and the sky. Knitted this shawl at Richard
@HandleyInquest
. Think of him each time I wear it.
And think of the many learning disabled people dying as a result of constipation. Utterly inhumane, grotesquely painful and completely avoidable deaths.
A candle for Sammy to celebrate his birthday❤️
Thinking of Sammy and Connor and Coco and Oskar and Laura and Danny and Richard and Joe and Rachel and Matthew and Thomas and Joanne and Sasha and Colette and Peter and Daniel and Jared and Andrew and Sally and Mark and so many more
Happy birthday Sammy
Today is Sammy's 15th birthday. His mum
@PAlbanStanley
and sisters would like to invite anyone who cares to join them in lighting a candle for Sammy tonight at 7pm.
I thought some who followed
@SammyInquest
might like to 🕯️❤️ pls RT
Things this is not:
> tragic
> heartbreaking
> inevitable
> complex
> someone else's focus
Things this is:
> deaths as a result of neglect
> deaths as a result of societal apathy
> deaths as a result of eugenic policies
> unfuckingforgiveable
40 deaths, 40 people, 40 individuals, some of them children.
All someone’s son or daughter, brother or sister, friend and neighbour.
Dead, in barbaric warehouses masquerading as specialist hospitals.
In the UK, in our beloved NHS
Thinking a lot about
@JusticeforLB
lately, losing hours of time, just reading, watching and reflecting on how brilliant a campaign it was and how phenomenal
@sarasiobhan
was/is in the face of utter harassment and abuse from
@Southern_NHSFT
Take 80secs to listen to this
1/13
I have so much more to say but this is my out of office tweet. Am shutting the laptop, ignoring my inbox for the next 7-10 days and smelling the roses/admiring my poppies.
Time out to recharge and recover and use my birthday next week as an excuse to eat and drink far too much
In time I hope to share more of what we heard and my thoughts.
This trial started 7wks ago, I've lived, breathed and dreamt it since then. My hands, back and heart are feeling it. So I'm going to disappear for a bit.
With thanks to my crowdfunders
/END
Learning disabled people were:
* 37% less likely to receive non-invasive respiratory support
* 40% less likely to receive intubation and
* 50% less likely to be admitted to the ICU while in hospital.
50% less likely. I struggle to find any explanation beyond eugenics /END
Gather round twitter, you know the drill, grab a brew and settle in to learn about Matthew Copestick, seen here on a water flume on a family holiday as a teenager.
This story doesn't have a happy ending, but it is important, and IMHO deserves your attention
1/25
Fern Foster
@ElyssaLeopard
Narrative Inquest Conclusion
Suicide
Two contributory factors:
1) Lack of independent advocacy
2) The manner in which she learned the news her baby was likely to be adopted, without any professional support
#GoPinkForFern
I was a mess last night at the
@LDNcharity
event on abuse of people with learning disabilities; overwhelmed by emotion and listening to
@AQuinnUnbroken
and
@sarasiobhan
speaking their truths. This is what I meant to say
Niece 2 turned 8 today; last autumn when she found out Mum was dying her initial concern was who would make her birthday cake... this 'honour' was gifted to Auntie Georgie and Grandma even supervised a trial run... photo from 4yrs ago and today. It passed muster, thankfully.
I appreciate lots of care leavers do have families, but if you are (or know of) a UK
#careleaver
who doesn't have a family member who knits, and has/is having a baby, and would like a hand knitted gift hit me up. DMs open. You'd be doing me a favour, need to attack my yarn stash
3 things bereaved families want regardless of the circumstances:
1) answers about what happened
2) accountability when something went wrong
3) action; because they don't want any other bereaved family to go through what they've been through
^^^ This, a gazillion times this.
I often find myself questioning the best way to bring about real lasting change and human rights legal professionals lead the way.
I've had the privilege to see many awesome legals in action, including the legend
@caoilfhionnanna
QC
Loved this 25mins
Hello, quick 2min update from me. I rarely tweet from my own account when I'm reporting on an inquest but I'll be going straight from
@SammyInquest
conclusion tomorrow to
@CocoInquest
so wanted to introduce Coco to you all, and pass quick comment on Down Syndrome Bill
1/
A tale of love, loss, death, community and grieving in 8 tweets
This is the street I grew up in, couldn’t wait to leave and then returned to live next door to my Mum in 3.5yrs ago.
There are ten houses in our little terrace, Sunshine Terrace as a neighbour calls it.
1/8