The CQC inspection of the unit where LB died is published this morning.

It’s damning. It’s devastatingly heartbreaking. For so many reasons.

It’s also unbelievable.

A bit of context… It’s 2013. Yes. Two thousand and thirteen. 2013. Post Winterbourne, post Francis. Post whatever. (And the Trust Board glibly minuted back in July that LB died of natural causes in a unit where everything was hunky dory.)

LB died. He drowned. Uncared for. Unsupervised. In a bathroom close  to the staff office (where we now know staff hung out, filling in endless forms). In an NHS setting clearly permeated with a dangerous culture. Poorly managed, poorly trained staff. (But plenty of em). A culture of indifference. Disregard. Carelessness. Process stamping out common sense/thought. Not even the most basic level of care provided.

A toxic mix largely ignored (but not unknown about) by the Trust, by the Clinical Commissioning Group, by the Local Authority. And one that would probably have continued if LB hadn’t died.

What a fucking mess.

A unit where most staff didn’t (couldn’t?) interact with patients at a human level. Patients (all four or five of them) left to fester, be fearful, bewildered, bored, unhappy and unoccupied. We already knew from our experience there was nothing approaching happiness in this unit. But we had no idea how poor it was. No different to Winterbourne View really. Just a different type of abuse. This time under the watch of the NHS. With a worse end game. A patient actually died.

How could this be possible?

LB should never have drowned. We all know that. People know that who know next to nothing about epilepsy. It ain’t rocket science. No one should drown in a bath in hospital. Chuck epilepsy into the mix and it’s beyond comprehension. He was 18. A young dude. He’d never lived away from home. And didn’t want to. But he was, through a complete lack of support in the community, pitched into this space. This foul, stinking, failing space.

That he spent 107 days in this hellhole with minimal interaction from staff before dying on his own in the bathroom is something we are left to live with. A constant pain that is indescribable. There ain’t no turning the clock back. He’s dead. End of. A life over. A life completely and carelessly wasted.

But there should be some accountability. For so many reasons. Not least the smashing up of so many lives. His, ours, and others.

And we really need to ask how it is possible that learning disabled people continue to be treated so poorly?

Shameful. Completely shameful.

I’ve been weaving my way around NHS/social care spaces online where minutes of meetings are tucked away. Safe from view if you don’t know to look for them*. I’ve read the Trust Board Meeting minutes and more Clinical Commissioning Group papers (which I was alerted to a while back because of poor service concerns in the unit since 2011). I drew a blank at uncovering the Adult Safeguarding Board minutes but given their website is fairly archaic, they may still be typing them in duplicate.

It was a fairly informative (depressing) activity.

Back in July, the Trust Board made reference to LB’s death;

A Serious Incident Requiring Investigation (SIRI) occurred in one of the Trust’s Learning Disability in-patient facilities, leading to the unexpected death of a service user. The postmortem indicates the user died of natural causes and early investigations indicate all appropriate systems and processes were in place and being followed leading up to the incident, however a full investigation is underway, in line with the Trust’s agreed policy.

I don’t think they should have drawn these conclusions from what was known at that time really. In a public document. Why make such a jump?

I also don’t think, given these are publicly available documents, they should be so fucking clinical. (On a pedantic note, a SIRI didn’t lead to LB’s death, but hey ho). He was a young man, a young person, even a patient. Someone with his whole life ahead of him. Not a ‘user who died’… What sort of people sit in these meetings?  How would they feel if it was their son, their brother, dad, grandad being dismissed so carelessly? If these documents are publicly available, you really (surely?) have to think about how you discuss/minute things sensitively?

These documents (Trust, CCG, and I’m sure social care if I could find em) are pretty remarkable/astonishing. Consistently diluting, denying, defending, protecting, spinning, reducing and embellishing. With so much jargon I wonder if they use an app to generate large sections on a rotational basis.

But back to the unfolding ‘story in minutes’. By October, the Trust was clearly forced to shift a bit on the whole ‘natural causes’/’everything was done properly’ position. Although spin and dilution continued. Things had got a bit more serious for them. LB became a ‘patient’ and there was a fairly pat, ‘everything is as it should be, following appropriate systems’ type statement about the internal investigation. This included the statement; the patient’s mother is engaged in the process and is identifying an advocacy group for us to work with.

For the record (to redress partial story syndrome), we were on the verge of withdrawing our engagement with the process seconds before the investigation was handed over to an external investigator. We’d been messed around by the Trust to a point that we could no longer realistically engage with them. The nonsense, contradictory, bizarre actions around our advocate (Fran) were unbearable and the attitude of the Trust towards us appalling.

Fran was put in a completely impossible and unworkable position. She received phone messages ordering her not to share the confidentiality agreement she’d been given with anyone (not even a solicitor). The Trust’s solicitor wrote to express concern about my twitter activity. They’d already flagged up they were aware of (monitoring) my social media activity (twitter, facebook and this blog) but I’d gone on to  ‘particularly disappoint’ them around this time.

The pressure and stress of dealing with these hostile, defensive and unnecessary actions was immense.

Because we weren’t sitting quietly and letting things be dictated by the Trust.

Eh, this can’t be right. What about (post) Winterbourne? Francis? Keogh? Berwick?  It’s all about duty of candour now, transparency and patient centredness (or bereaved family-centredness) silly…

Who? What? Post what? Bereaved family? Where?

We feel deeply angered by the way in which the (completely avoidable) death of our beautiful dude has been handled, both in interactions with the Trust and in these online (semi-hidden) records.

The worst happening imaginable has been made so, so much worse.

Classy.

*Google ‘the Trust name/local authority or Clinical Commissioning Group’ and ‘minutes’,’papers’ and/or ‘meetings’

Charlie’s Angels came round after school today. So lovely to see them. Catch up with what’s happening at school and reminisce (sob). As always, they blew me away with their stories. Their memories of LB (always new, hilarious anecdotes). And the lengths they routinely go to provide experiences for a group of kids who too often miss out. Well, unless it’s an experience laid on by the likes of the pity porn brigade which inevitably comes with a price tag attached; compulsory badged t-shirt wearing and organised photo-shoots.

We got chatting about the residential trip to Yenworthy last year. And the day spent surfing. They’d pushed one of LB’s classmates, a wheelchair[bed]-user, miles along the beach, wet-suited him up and got him out in a boat. (Not easy). His first time in the sea. They even managed to get him laying on a surfboard. For the experience.

Everyone had a ball. A day of laughter, sunshine and a good soaking.

The Angels recount these experiences with humour and an underlying (matter of fact and steely) ‘can do’ attitude. Remarkable. Though it shouldn’t be.

I think of the way in which LB was left to lie around the unit (through ‘choice’) all those months. Doing pretty much nothing. And the other young dudes I know who have hugely expensive ‘care packages’ (around £2000 a week) and yet lead lives of independently supported, er, nothingness. Sterile and non social lives (interacting only with ever-changing, underpaid, bored carers who co-exist in the same space for a set number of hours a day).

There is something horribly wrong about the way so many learning disabled people lead their lives in the UK. And a terrible acceptance that less than good enough is good enough for these dudes. ‘No can do’ is the default position. Endorsed by the (non) actions of policymakers, commissioners, practitioners and regulatory bodies.

If a small group of teaching staff can get a disparate group of dudes into the sea, smashing up the waves and having fun, why can’t expectations of what care providers provide for their (substantial) buck be ramped up?

[Serious question.]

It’s LB’s birthday tomorrow. His 19th. The local bus museum he absolutely loved agreed to open especially for us to have a celebration today. Staffed by volunteers. We mentioned it to people if we saw them. Emailed the odd person in a piecemeal way. Kind of left it really. Such a sad thing. This week has been particularly difficult. It’s almost impossible to make sense of a date that’s so hugely symbolic, that holds so many memories over so many years, when your child has died.

A right sad old time.

Anyway. My mum and big sis took over the organisation of tea and cakes. People came. They loved the eccentric and quirky museum. And the vintage double decker bus was full for a drive around the countryside. A genuine sense of celebration and fun.

Oh, and we passed the tiny woman with the chair on the bus journey. Yes. Really. Miles from anywhere. Weirdly magical.

So happy birthday matey. We love and miss the socks off you.

Stop loving and missing and thinking about our legendary dude who taught us so many lessons in how to be.

6.7.13

[In no particular order..]

1. Rant about being invoiced by the local authority for ‘fairer charging’ contributions towards care we never received.
2. Despair about nonsensical, ‘service serving’ discussions about choice, autonomy and learning disabled people.
3. Attend pointless meetings with numerous professional shapes and types.
4. Endlessly* worry about the lack of anything resembling appropriate or effective support for learning disabled people to lead productive and meaningful lives.
5. Manage direct payment returns.
6. Pretend to engage with the concept of social stories.
7. Have my mothering smarts surveilled and judged by people who know fuck all about me.

*I’ll still worry about this but not every moment.

Going through the posts I wrote and never posted. I’m going to start to post these (well the ones that won’t end up with defamation charges cough cough) to create a more comprehensive record. Some aren’t finished. I’ll include the original date of writing.

31.1.13

Short, not sweet, but want to capture the transition experience in real time.

Huge upheaval, upset and in some ways calamitous moments over the past six weeks or so. LB is back to school for four days a week. The lid is kind of on now, in a piecemeal, minute by minute way. Social services have chucked a load of money at him to cover emergency care (would be good to know where the emergency care is outside of family, and institutionalised spaces, but that’s personalisation for you).

I’m struck by the level of complexity/involvement in every interaction around LB at the moment. What I’m calling the ‘dit.dit.dit’ moments. (A very fast, sharp dit.dit.dit). That’s how I’m experiencing them. A kind of frenetic pinging, round and round my brain;

Let transport know he’s back at school on Monday. Dit.dit.dit. Rearrange work plans (in tandem with Rich) to cover after school because after school clubs/activities are not doable at the moment. Dit.dit.dit. Keep the mobile phone on loud even during meetings. Just in case. Dit.dit.dit. Organise a car parking permit for the first time since starting work. Dit.dit.dit. Make decisions about how much of private? home life needs to be disclosed at work to enable working life. Dit.dit.dit. What about Wednesday when there’s no school? Dit.dit.dit. What about Tom and the other kids? Dit.dit.dit. Dit.dit.dit. Etc, etc, etc.  Etc.

Yikes. Do these moments relate to the numerous articles reporting on the suffering, coping and burden experienced by parents of disabled children that I tossed aside furiously in my earlier research?

Nah.

They are related to (and these are all interrelated):

• A reactive rather than proactive, integrated health and social care system
• Entrenched views of learning disabled people as worthless (or worse) and the accompanying paucity of funding
• A lack of vision, or aspiration, for the lives of kids like LB

We’ve set up a fund. It’s only taken around 3 months to organise and think about, but it’s now in existence and the full details are available here; LB’s Fighting Fund. Basically, in amongst the horror of the events of early summer, we found out that it was hugely important to get legal representation at the inquest. Without this, it would be harder (or pretty much impossible) for us to find out exactly why LB died, and what changes should be made to ensure that no other dudes experience what he experienced. This legal representation is hugely expensive.

So, so outrageously and enragingly unfair. Our son died, in the ‘care’ of the state, and we have to pay. Another example of a stinking system. We are lucky to have an exceptional legal team fighting LB’s corner (this is probably clear from the twists and turns of the past few months), including some pro-bono support (for which we are enormously grateful). We still need to raise in excess of £10,000 over the following months.

While thinking about fundraising, we hit on the idea of producing postcards, greetings cards and A5 prints of a couple of LB’s fantastic pictures. Crowdsourcing funds through selling single postcards at £1.50 (including p&p) with a range of alternatives to suit most pockets. So crack on over to LB’s Fighting Fund and order some postcards. Let’s get these babies pinging all over the country.

PS: This fund is to raise money purely to cover legal costs. If any of these costs are eventually recovered, or if LB’s artwork goes viral and outstrips the legal costs, we will split any remaining money between two charities; INQUEST.org and OxFSN. 

The Trust have commissioned an independent investigation into LB’s death. It will be done by an organisation with an excellent reputation. This is an immense relief to us. Thank you.

For the first time really, since LB died in July, we can sit back and just think about him.

So here’s a little seen photo of him shopping in Asda with the 6th form, in the months before he went into the unit.

And a funny memory from when he was younger. Playing charades one Christmas.

LB’s turn. Bouncing up and down, almost bursting with excitement.

“A film”, he said, with some cheeky prompting.
“A film!”,  we all chorused.
“One word!”
“One word!”, we all chorused.
“TITANIC!!!!” he shouted. With a beaming smile that would melt your heart. Love him.