Parking the NHS/social care stuff tonight. No swears. Too weary. Just a reflection about home life and LB.

We had the big push very early on to sort out his room/belongings and stuff. Agonisingly painful, but the right thing to do.  A new ‘order’; special, special memories in a trunk in our bedroom (the one that LB shared with Owen), other belongings in the loft. Sob.

But the order drifted pretty much straightaway. We’re hoarders. Well maybe I’m the hoarder, indulged by those around me. Memories, mementoes, pieces, delights, treasures, things/objects that have, in the last few months, taken on an aching symbolism. Countless handmade gifts from school; dusty gift boxes/candle holders, decorated with shells, buttons, mosaic. (Priceless) declarations of love, care, affection and thought.

New spaces are appearing. Spilling outside the chest and the loft. The ‘pupil of the week’ sheets (yes, yes, he had so many… what can I say? The dude was a dude and a half…), stacked up behind fridge magnets have been stored away carefully. But other things appear. Hornby figures from LB’s 18th birthday, almost a year ago now, are lined up by the computer where I work at home. With a rogue football figure from his  team of ‘football guys’, a bus badge sent to us by someone who works with Rich, and a stack of DVDs/CDs of photos from school, school trips and home movies.

Preciousness. More ways of keeping our exceptional dude in our hearts and minds. I don’t know. I’m not sure how much we need these reminders to remember LB. But when I think this, I weep. And continue to enjoy looking at the quirky reminders, of a quirky dude. Magnified.

Another week in which the stress and pressure generated by the actions of the Trust has been almost unbearable. I don’t have words to describe what this experience feels like. I say ‘almost unbearable’ because the only other step is ‘unbearable’ and then what is there?

As I’ve said repeatedly for what seems like forever now, the death of a child is any parent’s worse nightmare. To then have to deal with the appalling, pretty much inhumane system that kicks into touch when this happens, unexpectedly, in an NHS setting, is beyond words. I’m at the stage that any update on the latest development in the twisting, turning, shifting, contradictory process makes me cry. Simple as. Very classy.

So fuck off Trust (legal team and whoever else is fuelling this horrible, nasty, destructive and completely unnecessarily designed process) for a few moments. And let me focus on the precious moments. Team LB. What can I say? A group of people who are dedicated, passionate, experienced and committed, bringing a shedload of expertise, networks, ideas and action. In the background, INQUEST.org. A remarkable organisation. Unobtrusive, non-intrusive and quietly and efficiently effective. A perfect mix for the recently shell-shocked.

And then an army of family, friends, colleagues and people we don’t know. Offering thoughts, good wishes, love, kindness, support, space to grieve, momentary havens from hell, cakes sales and accessory swaps. Random moments of beyond kindness. People raging with us, moved by the death of our beautiful, funny dude who was goodness itself.

Preciousness we never really knew existed.

First, if you can bear to read this section from our local Clinical Commissioning Group’s Quality and Performance Report, dated 25.7.13 (available online/names removed – although not sure why I’ve removed them). It refers to the unit LB was in.

In the non-acute sector
i. Trust A

There are concerns about the safety culture and quality of patient care in specialist inpatient ‘Assessment and Treatment’ services for people with a learning disability and mental health issues.

Since 2011 there have been concerns about the way in which serious incidents requiring investigation (SIRIs) have been investigated by the [Old] Trust. The concerns were around the organisational response to incidents and specifically that they appeared to suggest the lack of a robust safety culture within the organisation.

It was hoped that when the [Old] Trust was acquired by Trust A that concerns would be addressed. However [X]CCG and [X]CC have not been sufficiently assured that the required change has taken place. Currently [X] county are not placing patients in one Trust A Assessment and Treatment Service and there are conditions in place around placing patients in a second service of this type.

Many of the SIRIs [Serious incident reviews] involve the use of physical restraint. This is a high risk area which requires a clear organisational approach, strong leadership and close supervision. At CCG’s request [X]CC has issued a performance notice to Trust A around the management of physical restraint. The notice requires that the trust develops and implements a code of practice for restriction and restraint.

XCCG and XCC have been working with Trust A and continue to do so. XCCG continues to monitor Trust X SIRIs in services used by X county patients closely.

A few thoughts. I’ll keep them brief.

1.  How could significant concerns around a specialist service for vulnerable people drag on since 2011?
2. Why are these concerns not common knowledge? We would never have let LB be admitted to the unit if they were.
3. He was restrained at length in the unit even though this unnecessary practice was known to be an issue within this service, by the CCG/CC. An 18 year old pup. Heartbreaking.
4. By the time this meeting was held in July, the CCG must have known about LB’s death and yet they drivel on about ‘continuing to work with the Trust’ and monitor services. Boredom, disinterest and non-action palpable.
5. The CCG raise concerns about the ability of the Trust to respond effectively to ‘incidences’ and yet the Trust are still able to ‘mark their own homework’ through conducting the internal review into LBs death.

How could any of this happen? Be happening?

So. For the record.

• We have no confidence that the Trust will carry out an effective internal review.
• And we have no confidence in the County Council or CCG to do anything to improve the lot of learning disabled people.

Our son lost his life through what are obviously longstanding and ongoing, shabby, careless and stagnant practices within a state-run organisation. In “specialist” services that are supposed to provide ‘care’ to one of the most vulnerable (and my brain screams to have to keep stating this, because I despise the term so much) groups in our society.

Once again. Is anyone in health or social care with any power going to do anything about this?

Oh, and if anyone knows Ann Clwyd, MP, could you bounce this to her?

Two things tonight. Two that are uppermost on my mind (outside of ‘normal life’). I’ll park the friend who asked for her son (in independent supported living with a package funded at around £2000 per week) to be taken to the cinema a year ago. He still ain’t been. And the friend with a son in independent supported living (whose neighbours repeatedly campaign against his, and his housemates, right to live in the community).

First. Treating learning disabled young people as “adults” once they turn 18. Well this is a complete fuck up approach in my book. And don’t switch off, you doubters, you. I ain’t suggesting that learning disabled people should be treated as “children”. Instead, can we get over our fixation with distinctions that relate to “time” which is, itself, pretty arbitrary? Er, midnight on the 28/10/13, a “child”. A second later, an “adult”. Nonsense. For anyone really, but there are serious and potentially damaging implications for those who don’t conform to expected ways of being and doing.

This is underlined by inconsistency across services and space. In some areas/settings, “children’s services” include learning disabled young people up to 25. A more benign, family friendly (though not necessarily ‘good’) space. In others, the cut off happens at 18. Eh?  What does this mean? Who makes these judgements about what constitutes “adulthood” for learning disabled people? And why such inconsistency? Once an “adult” it’s easier to obstruct family involvement, of course.  LB was treated as an “adult” by health and social care. A terrible, terrible, catastrophic judgement.

Second. Various little birds have told me…

[Eh? Little birds? Wha?

When we were kids, we lived in Southend. Southend carnival procession was a huge annual event. I remember as a kind of tiny, going to the sweet shop round the corner on the morning of the carnival. The owner, bashing toffee slabs with a hammer to put in paper bags for us, said “A little bird told me you’re off to the carnival”. I was mesmerised by his magical ability to know this….]

… that another young dude died nearby, unexpectedly, in the (non) care of the same Trust. Eh? Wha? Really??? So, so wrong.

These birds are fairly substantial. In terms of detail/evidence. Maybe more so than the sweet shop owner. Less magical and more evidence based (although I prefer the former). So it turns out that, at the same time we were experiencing the harrowing, skullduggery actions of the Trust, a second family were further along the hellhole process of internal review and inquest. Again, with no genuine reflection on practice.

A second young dude died barely ten miles from here. In a similar time frame. And the Trust pulled the stunt they pulled with us last week…

Duplicity? Stupidity? Arrogance? Denial of the efficacy of the little bird network? How can this be? So, so difficult to make sense of. So hard to engage with on a rational level. Well, there is no rationality really. Our understanding of anything was smashed by LB’s death. Did I really just type that?  There are no words to capture this experience. No resources to engage with such blatant inhumanity. The system is rotten.

In a strange coincidence (not) a review was published today highlighting failures in the NHS complaints process. Good. But worth pointing out we’re not ‘complaining’ about NHS actions. We tried that back in March/April in a vacuous, pointless exercise. We’re focusing on the abusive, exploitative, bullying and careless treatment of learning disabled people. On systemic disregard and indifference. On the breaching of the right of learning disabled people to be – to go to the cinema, or live in the community – and their families to be with them.

And, in LB’s case, his right to life.

How many times can I return to this? [Er, clearly endlessly…] But this is hugely important. Yesterday we received a DVD with over 368 pages of notes about LB’s healthcare from the hospital. 368? It wasn’t like he needed a lot of hospital care. He was in rude health. Had a spate of assessment experiences as a tot (see polaroids on previous post) and then pretty much coasted until epilepsy kicked in around the age of 16.  Still, the hospital held this book-length set of papers about him.

Last night I went through them. I was struck by two things. First, the level of surveillance these demonstrated.  I had no idea that even the faceless assistants in those week long assessments were recording my every move and interaction with LB, the other parents and the world. Blimey. I was seen to be ‘sociable with other parents and staff’. Thank fuck for that. I thought we were all just hanging out. Negotiating tricky paths in a space of uncertainty.

(When I think of the layers of ethics involved in any research project compared to this type of gig? In the former, ethics committees act as a straitjacket inhibiting any unauthorised move on the part of the researcher. In the latter, family life as open season for any ‘professional’ to dive in, comment on and pick over.)

The second thing was what this surveillance showed about my relationship with LB. In the countless waste of bloody time assessments, I was the central person that professionals referred to, drew conclusions from and commented on. Consistent throughout the notes are comments like “LB frequently went to his mother for cuddles or with a toy. He gave good eye contact and lots of smiles”. Sob.

I ain’t flagging this up to say that LB and I had an extraordinary relationship. On the contrary, we had a relationship typical of many/most mothers and children.  But, when you have a disabled child, this relationship becomes public property. The subject of judgement. And when your dude turns 18, you’re transformed from being a central figure of love and care, to being a problem. That is very, very damaging. For everyone.

This afternoon I’m giving my first ever (and probably only) presentation about being LB’s mum at a women’s literature conference in London. I’d agreed to do it before he died. I wasn’t sure I’d be able to stand up and talk about him, so I made this film about the spaces of mothering. I’m now thinking it will have to be a work in progress as I need to add ‘Official spaces’.

A frazzling/exhausting couple of days, but Fran is back. Reinstated to the investigation panel. Thanks to Team LB for such an instant and remarkable response to her removal, and the power of social media for such dedicated and collective support. And good on the Trust for listening and responding.

On a related note, thanks also to the hospital solicitor who sent us original polaroids she found in his notes. Carefully packaged in corrugated cardboard packaging and laccy bands.  Kind of small act but enormous in its preciousness. LB as a pup. Unexpected and unseen pics.

So here’s the gig. A couple of weeks ago, the NHS Trust let us know that an advocate (family member or otherwise) would be part of the investigation panel. Up to us who. This person would fully participate in the investigation, attending meetings, interviews and contributing to the final report.

Well. That’s something, we thought. An internal investigation still made our brains implode, but at least there would be a measure of transparency. A positive development. Always particularly welcome in extreme times. We asked Fran. Fran, who has a wealth of personal experience and is a trained advocate. One of the kindest people you could ever meet. She agreed (an enormous commitment on her part, both in time and emotion).

Yesterday it was all change. The Trust’s legal team had discovered a conflict of interest. A conflict of interest? 

Hold on to your hats for a tenuous link worthy of an oscar; Fran does some voluntary charity work. The Chair of the charity used to be CEO for the Trust that used to run the unit.

I thought you might struggle with this so I’ve created a diagram (see Figure 1).

I hope this makes it clear. A conflict of interest worthy of ‘the dog ate my homework Miss’. A conflict of interest trumped up in such unspeakably awful circumstances.

So, before she’d even started, Fran was off the gig. The only person so far, in this tragically appalling tale, to lose her position. And two Trust employees (employees) sit securely on the panel.

That’s not all.

Because we’d had the gall to suggest an advocate with a conflict of interest, we’d lost our right to choose an advocate. We were to nominate an advocacy group and the Trust would select an appropriate advocate from this group.

That’s not all.

1. The new advocate was no longer allowed to sit in on staff interviews.
2. The new advocate was to sign a confidentiality agreement so we would be told nothing during the course of the investigation.

When is an advocate not an advocate? When they ain’t a fucking advocate. That’s when.

Off to cry again now.

I don’t think there can be many worse experiences than having your son (with epilepsy) drown in the bath in a secure NHS setting.

But then, instead of being able to grieve ‘in peace’ (not that I can ever imagine feeling peace again), we have to deal with the monster that is the NHS and the procedures that kick into action when something like this happens. And this is fucking hideous.

This state run organisation, supposedly built on the premise of care, is able to investigate its own cock-ups and, at the same time, grind bereft, shattered and exhausted families to bits. How can this be? I’d heard terrible, terrible stories from other parents but thought timing wise, given all the recent talk of change and reports into the way the NHS is run, there would be some improvement in the way in which it deals with unexpected deaths.

Well you can chuck all the post-Francis, post-Keogh, post-Berwick talk in the bin. Post-my arse. So many cliches spring to mind thinking about these reports. Wind, pissing, paper, written, teapot, chocolate.. endless. Simon Denegri nicely illustrates how the language of these reports suggest inertia rather than action. Yep, inertia, surely a central feature of a monolithic structure. Oh, and you can lob ‘post-Winterbourne’ in the bin too while you’re at it. Given LB died in a treatment and assessment hellhole.  Empty, meaningless statements of change. Almost embarrassing really.

We (stupidly – well more me than Rich to be honest) thought that we were being listened to. That our concerns and our lack of confidence in an internal [yes, really, internal] review were taken seriously. Our CID guy even forwarded the link to my ‘letter to the internal reviewer’ to the person leading the review. Love him. The acronyms disappeared, LB was called by his name. And the Trust introduced some innovative levels to the review. Innovation Simon, not inertia. Some comfort. Movement in the right direction.

And then, yesterday, an about turn. Innovation suddenly reduced to a shell. A complete sham. It was a rug, feet situation. We walked round for the rest of the day reeling and raging. Truly battered. Our son died while in the ‘care’ of this organisation. And now, this same organisation is wielding a level of power over us that is astonishing in its wrongness. Astonishing in its hypocrisy.  Astonishing in its cruelty.

I went into the kitchen and was a bit taken aback. A black marble bridge type structure divided it in half. With small arches to the sink. There, sitting at the kitchen table, wedged in next to this new feature was LB. Wearing a bright red, knobbly knit jumper and red striped shirt I hadn’t seen before. It was a bit of a dodgy combo but he looked a complete chill pill. That cheeky half grin on on his face.

The next moment, he was standing next to me enduring the biggest hug I’d ever given him. He was never a hugger, love him. He chuntered away under his breath as usual.

“Do you like Irish lorries, LB?” I asked him.
He grinned.
“I love you matey”, I said.

States, rather than stages, of grief are becoming recognisable. I’m going to describe these here to chuck ’em into the general mix of grief discussion and well worn (out) Kubler Ross type models.

My fledgling states, in no particular order;

1. Delayed. A state of ok-ness. Open to distraction. Ability to function reasonably well. Happens in social/work situations. Able to have a good belly laugh. [Good.] Tends to end with a need to find some space to cry, to hold on to some memory of LB.
2. Intermittent. A peculiar dotting of terrible but fleeting grief moments that happen in the instant. Without warning. Generating a strange, dissatisfying, strangled cry without tears. Kind of easy to recover from, in terms of picking up where I’m at. Wearing and unexpected.
3. Raging. A star spangled, expletive drenched anger. Directed at the health and social (non) care LB received.  A constant and harrowing emotion fuelled by the contrast between the extraordinary (and unrecognised) level of care we (like other families of disabled kids) provided and the ‘care’ he received from health and social (non) care.  Ending with him dying so carelessly. In such a setting. There are no words. Just consuming rage. How could they?
4. Numbness. A temporary halt on emotions. Like yesterday, when my parents, lil’ sis and I were planting flowers around LB’s grave. The enormity of this action sort of generates a shutdown. To create a space to get through.
5. Fleeping. An almost cathartic state in which tears spill silently without control. Like a flooding, weeping thing but without the sobs. Or anything. Just tears. Last night the combination of curry and ‘Never Mind the Buzzcocks’ caused fleeping. Curry and/or the Buzzcocks always generated a cheeky appearance from LB. Either to scoff a plate of food (or two), or to seamlessly squeeze in next to Chunky Stan to watch Noel Fielding post bedtime. LB loved Noel. These appearances were always amusing and Rich kind of encouraged them. With hindsight they demonstrated a contentment LB had with himself. And we loved the way in which his cheeky rule breaking was accepted by the other kids. They never questioned the differential treatment he received. Instead they added it to family folklore.

How to live life once a child dies? In such a terrible, unnecessary way?  Rich and I have moved beyond a state of shock, of saying repeatedly ‘I can’t believe it..’, to saying ‘I bloody hate this’.

And added by my mum and sis;

• I find the night-time silent sobbing without tears the worst – either not getting off to sleep or waking after a couple of hours with a real pain in the chest and trying not to shake the bed with silent sobs. We are all feeling totally bereft, not just losing our beloved eldest grandson, but realising that the rest of his family will never be the same again, so we have lost the funny family unit they used to be as well. It’s a double whammy.
• For me its still the driving to Oxford …possibly because I do it most on my own and have time to think about LB (quite often in the present then have to remind myself he is no longer physically present) and no amount of Radio 2 or Heart or cd of the day can distract the thoughts……sad sad sad.

   

  Whatever grief state is in play, life is crapshite now.