Why? #justiceforLB - Updated

Connor Sparrowhawk was 18 - He had Epilepsy, was learning disabled and died in an NHS Unit on July 4th 2013 - I have followed his mums fight for justice for him and to get the truth known about how a fit and healthy young many could drown in a bath.

 
I didn’t know LB – but you only have to watch this video  LB - the ultimate Laughing Boy  His smile says so much. I cried watching it, It bought back my own story – when I “lost” my son for a long long time. But unlike LB – mine has a future. I cannot imagine the pain and loss his family feel. It must be hard enough losing a much loved child, but to know it was preventable is beyond me. 

I made a  promise last night – there will be justice for LB and all the other dudes hidden away in assessment units and homes – Im just one person but I hope you read the Report and join the #justiceforLB campaign on twitter or get involved via his mums blog my daft life – Its time we changed the way society views learning Disability and importantly the Health and Social Care system – it wont happen over night but it has to happen if LB is ever to truly get justice.

The report concluded the LBs death was preventable.

Why?

No matter how I try I come back to Why? 

Why do people with learning disabilities who at 17 years & 364 days need support to varying degrees, suddenly the next day become an “adult” so the Health and Social care world can effectively change the rules.

Where before the family are vital advocates in trying to get the best care and support for their child, become a nuisance and viewed as antagonistic and unduly controlling the day their child becomes 18.

Particularly in LBs case, where NO actual assessment was ever carried out by the Unit so they were effectively working blind – and chose not to engage with Sara (Lbs mum)

This is important as this to my Non Professional eye contributed towards LB’s death

Why? Do we as parents, patients, families, campaigners, interested people have no option but to be fluent in and use the jargon of Health & Social Care NON Language

Pathways

Capacity,

Challenging Behaviour

Personalisation

Independence

Personal Budgets

Transition

To name just a few of the jargon words that obscure and deflect the true reality of learning disabled people’s lives and their family’s realities. These words crop up throughout the Health and Social Care world.

Language matters, the assumption is that We as non professionals will learn the language Did  it contribute towards LB’s death?  I expect no one bothered to tell LB he was supposed to be fluent in it  and while others said he was Transitioning towards independence – maybe he was scared by all the changes and conversations about leaving school and didn’t understand what all the jargon meant or maybe he did and that increased his anxiety?

Why? Wasn’t LB’s family listened to, particularly his mum – when she tried to tell them about LB, his needs, likes, dislikes, his medical history, his epilepsy well basically everything about him.

This Contributed towards LB’s death!!!

I see it time and time again, hell ive been there and got the T-shirt the endless months of trying to get my son T help when he has his first mental health crisis, being dismissed, ignored and told repeatedly I was just “mum” I will bet my fabric stash (and it’s a big one) that LB and his family had little to do with the learning Disabled team because somewhere along the way “mum” was fed up, angry and disillusioned by the “system” and LB said ive had enough.  – the Unit was just another battle in a very long list of battle to make sure LB got the best care, that he was understood and seen as a human being

Why? wasn't LB given the respect and understanding he needed, the one person missing from the report really is LB where is he? I don’t mean the contradictory LB described – I mean the recognition he was only 18 by the staff and scared, confused and angry. 

The Unit failed to carry out a full assessment because LB didn't want to participate - non of the 17 trained staff, that included psychologists or senior managers revisited this? How can you get a sense of someone if you dont talk to them?

I have struggled with this particular WHY?

This report isnt just about the 4^th July – this is about the 15 weeks that lead up to it.

I don’t want to even explore this why –in part I don’t want to add more pain to LBs family.  I hope many people do ask this why, because its time we collectively stopped pretending to ourselves its ok and people are professional right?  Caring right?

Wrong

The "sauce indecent" – got to me on so many levels 

There are two versions of this incident - actually three but LBs version is not recorded, was he ever asked?

 3.10 CS attacked a member of staff on 2 May. CS had become agitated during the evening meal and lunged at a member of the nursing staff, ripping the individual’s shirt. Staff restrained CS and transferred him from the dining area to his room. CS initially did not respond to de-escalation techniques but gradually calmed down and staff left him in his room

If you read the above you might think LB was unpredictable and agressive, the member of staff was justified in thier response..but what if you read this bit first?

 5.44 An incident took place in the dining area on 2 May when CS was having dinner. He was putting a lot of sauce on his meal and S11 was joking with him about it. When S11 approached CS to see how much sauce he had used CS became agitated and rushed at S11, trying to hit him and ripped his shirt. CS was restrained. He was taken to his room where he remained restrained. He did not respond to de-escalation. He was given prn 0.5 lorazepam and left in his room. Ten-minute observations continued from 18.50 to 19.40. We found no record of observations until 20.30 and they then continue without a break. CS stayed in his bedroom until morning. His mother was told what had happened.

The staff member may have seen it as a ”joke” but so did the staff at Winterbourne View, A supposedly experienced member of the team well im guessing experienced they certainly explained all the restraint techniques well enough, yet didnt have enough **Autism awareness to know that LB like many learning disabled people struggle with social interaction, often don’t get “jokes” add in a stressful frightening experience is it any bloody wonder he lashed out.

The blatant lack of respect, told from a perspective that LB was unstable and aggressive, actually what I read was a scared dude who was being bullied. Yes Bullied and then restrained by the Bully – Care that isn’t care that is the biggest Why of all – how was a culture allowed to develop in a £3,500 a week well resourced, well staffed unit that said it was OK to pass the buck,  trivialize his epilepsy and  bully a vulnerable, scared learning disabled dude who had no power because the most important advocate he had wasn’t bloody listened to which  ultimately contributed to his death.

PS: I'm not the only one who has been moved to blog and ask Why? 
Have a read of a few other bloggers thoughts on the report and the appalling way LBs family have been treated.

Im not sure I could read all of them at once. They are both personal thoughts and brilliantly analytic, oh and heartbreaking, rage inducingwords - that unlike Southern Health get it

Mark Neary - "A Preventable death" Some questions
The SmallPlaces Preventable
George Julian discrepancies-blatant-misses-and-gaping-holes/
Making It up i-remember-his-jeans-were-wet

Funky Mangos Musings connor-sparrowhawk-death-by-indifferenc
Arbitary Constant On Southern Heath & connor sparrowhawks preventable death
People 1st England statement The preventable death of Connor Sparrowhawk
Indigo Joe Blogs let-it-not-be-about-lessons-learned
Building our nest together parents-not-spoken-to-enough
All big ideas start small some-thoughts-on-lb
A bit missing a-preventable-death-justiceforlb
Arbitary Constant congratulating-southern-health-and-fisking-them-and-true-leadership-justiceforlb/ 
Chris Hattons Blog /bystander-apath
Mental health and mental capacity law connor-sparrowhawk-easyread-version 



**I will add more if I see them