The days afterwards… sharing experiences

Posted on June 4, 2014 by sarasiobhan

I found out the fullish details of the unexpected death of another dude we knew about in Oxfordshire this afternoon. Kind of lucky (is that the right word?) I had the day off. His mum (I’ll call her Maria for now) was worried about how upsetting it would be for me to read this. Yeah. It was. As upsetting I’m sure as it was for her to write it.

It was also shocking. And harrowing. Damning of health and social care for dudes. And so illustrative of how completely inconsequential our dudes lives are to those who are paid to provide care and support for them. Not necessarily to those who actually work directly with them, but certainly pretty much everyone above that tier. How can this be?

I just wanted to flag up a few things that leapt out at me now about those early days.

When an unexpected death happens within the NHS, families have no idea of “the process” about to unfold. And not knowing means that the NHS holds all the power and, probably reasonably regularly, the ability to keep things unexplored, unexplained and out of the public domain. I know in the post-Francis world of candour and transparency this should no longer be the case. But as the old world shows no real signs of waking up and joining in, I’d advise families to think the worst. Sadly.

I was contacted pretty much straightaway (on twitter I think) by a wonderful barrister who had been reading my blog. She advised contacting INQUEST immediately. I think I spoke to her the day or so after LB died but I can’t quite remember. It was such an unimaginable time. I emailed INQUEST on the Monday morning so suspect I must have done.

LB died on the Thursday not the Monday. This email alone illuminates how fucked up the system is. Can you imagine emailing an organisation less than four days after your child’s death in hospital to ask for advice? Advice? How can this be?

At the same time, it underlines how important it is to be informed. Within four hours of sending this email an INQUEST caseworker was in touch and phoned to explain exactly what would happen, what we needed to do and what to expect. It was a terrible shock. The cuddly NHS suddenly seemed a whole lot less cuddly. We were recommended a solicitor within days and I was making calls to the Coroner’s Office to demand that LB’s autopsy was done properly. Can you imagine?

Maria and her partner weren’t given early warning of what they should do and what lay ahead of them. So they dealt with different horrors. Just as damaging. What was similar were the throwaway emails from Ridgeway/Sloven Health. ‘If there’s anything we can do’… type comments. These statements are so awful they should be banned from any interaction to do with unexpected deaths in the NHS (or any setting really). How are you supposed to respond? Where on earth do you start given where you are? What can you do? What are you offering? What do you mean?

Maria’s husband received a mobile phone message from the manager of her son’s ‘care’ home stating they should let him know if he could ‘help with the funeral arrangements’. Eh? You’ve just found out your child is dead and some suit is lobbing meaningless ‘small talk’ at you. Vague comments around ‘help with funeral arrangements’ is nonsensical to a bereaved parent. What help? Making sandwiches? Finding a venue? Stumping up the cost? Choosing a coffin? Deciding on burial or cremation?? It’s at best a careless offer and at worst a dirty trick. To tick a box and scarper as far from the fake offer as quickly as possible. Not sure there needs to be much of a sprint at this point as I can’t imagine many parents/family members will pipe up with any suggested ways of helping.

I don’t know but suspect this whole vile crap, uncomfortable offer comes from empty policies coloured by the discomforting thought of unexpected death within an organisation designed to sustain health. I’d suggest get over the discomfort and work out the type of support families in such situations would want (practical support like food, cleaning, clothes washing, money to cover being out of work, funeral costs, paying bills, contact with schools/university/employers, emotional support like counselling, etc, etc) or withdraw the empty offer. Even with good intentions it all becomes nonsensical given the seemingly unavoidably enormous costs involved in preventing the NHS steamrollering over what’s happened.

“Er, yes, thanks, can you provide the egg sarnies at the funeral? Cheers…” [Up to £25-30,000 of legal costs? Wha??? … ]

In the meantime, the anniversary of LB’s death is getting closer. Something I’ve been able to avoid dwelling on largely because of the remarkable distraction of #107days. If any influential NHS or related peeps want to openly chuck their Post-Francis commitment and belief into the transparent, democratic and collective joyfulness captured in these days of actions, I’m sure we can fit you into existing days. In the spirit of making the incomprehensible/baffling simpler. And hopefully to show early steps to different ways of doing and being.

An antidote to the obscene. And inhumane.

“A place I call home”

Posted on June 2, 2014 by sarasiobhan

Warning: It’s 12.30am. I’m on Madison time after a full on, action packed four days in the States followed by Epic Party Night. My ability to think, write and judge is probably a bit wonky. I just caught up with the latest ‘news’ from the Winterbourne Joint Improvement Programme and I’m going to be a bit short and to the point. LB died (he died?) and I really don’t want to hear more shite about shite.

Ditch the niceties and stop thinking there is some “treat” space to ‘focus energies and attention on what can be achieved’. Real people are experiencing crapshite experiences that would not be acceptable to most people’s pets. Stating ‘We are where we are’ as if there is, or has been, no agency involved is offensive and unacceptable.
The passive, hopeless ‘we’ve only got a year to go so what can we achieve?’ is nails on blackboard stuff. If you take on a tough gig, you should really have an understanding of the terrain.
Ditch the ‘we must give hope to the individuals and families who are currently in hospital settings…’ Those individuals and families really don’t need your empty words. They have a much more sophisticated understanding of the landscape of provision and horror they or their family members are experiencing. They want action.
‘We must not decide the challenge is too difficult and give up’. Er. Not sure what this is supposed to mean/achieve. But if you want to bung me whatever salary scale to work within such parameters, please do. “Ah, thank you NHS/social care employer, I took on the task with good faith but the challenge was a bit tricksy so I’m giving up… Oh and that tiny blip about abuse in one of my residential provisions? We really don’t need to go there, I’m doing my best…”
‘I’m pleased to announce there has been a 100% return from NHS local and national commissioners’. Eh? So there is a choice attached to providing these figures? As ever, I can’t help wondering if there is some sort of longstanding joke going on. The whole system seems to be hamstrung by nonsensical demands and yet in areas in which attention really needs to be focused, there is an ‘opt in’ attitude.
Stating ‘if you want to know what the situation is in your area please do ask your local CCG’ is a bit like saying ‘Rarra hoo ho, bolowlo, bloooblom gara‘. Most people don’t know what a ‘CCG’ is and if they do, contacting them is one of those mysterious (utterly frustrating) processes.
The discrepancy between the figures and ‘what was agreed by the partners in the Concordat’ is something you should be dealing with. Presenting a set of unexplained figures that don’t fit with the model of what you expected to achieve at this point, with a bit of a curious question mark attached is, erm, fucking unacceptable.
Not sure now you have ‘robust and detailed quarterly figures’ this will actually lead to change.
Talking in terms of ‘local heroes’ is pretty offensive. It shouldn’t be seen as ‘heroic’ to provide appropriate support/provision.
As I always bang on about, the focus on the well being of people who were in Winterbourne View ignores people in other, similar settings.
”Unsticking’ complex situations’… ? Eh? What does this mean?

Basically, what a pile of old crap. It strikes me that we have an extreme case of provision for a group of people that no one cares for or about, other than their family (if they have one), that have a historically designated space (despite a body of evidence that challenges this space) in which all bets are off. Restrain, medicate and leave to fester. And yet Commissioners can find around £200,000 per year to keep people in places you wouldn’t leave your dog in for a weekend.

LB died (he died?). Can you imagine? Can you imagine your 18 year old son losing his life through sheer carelessness in a hospital? Nearly a year ago now. The only concrete response other than the crap hole unit he was in closing (which is a cheap shot to avoid actually changing provision), is a blanket ban on bathing for remaining patients in the next door unit.

I want to ask the Winterbourne JIP/Department of Health/NHS England;

What the fuck are you actually doing?

What have you done all this time?

How much funding has been spent on the Winterbourne JIP?

The Epic Party Night

Posted on June 1, 2014 by sarasiobhan

Last night was ‘the party night to end all Justice for LB party nights’ (Day 73 of #107days). We don’t do things by halves on this campaign. There was a two pronged approach to this night; a big bash at the Oxford Sports and Social Club organised by Becca and the life raft and an English Country Dance at Bletchingdon Village Hall organised by Caroline. I work with Caroline and she came to the JR hospital with me on July 4th last year. I don’t know what it’s like to be with someone in such unspeakable circumstances (my mate Mary who works in A&E was also there). Caroline shared that experience.

The big bash caused Becca and the gang quite a few sleepless nights. Volunteers queued up instantly – two great bands from Oxford (Mean Montage and Yowash), Alan Joyce, the bacon bap seller from outside Oxford Rail Station, NansforJustice who covered the cost of the room which was offered to us at a great rate by Jenny O’Loughlin, the General Manager at the Oxford Sports and Social Club (OSSC). The most stylish tickets imaginable were designed by Vic, Sam and Trev from Identica, and LNS Print produced em for free. Frog Orange produced an Eddie Stobart themed balloon bouquet and backdrop ‘LB’.

The ticket sales were less hot off the press and given the ballroom at OSSC holds hundreds, there were some anxious moments around ending up with a handful of peeps kicking around awkwardly in the face of such generous contributions. This was an anxiety Becca, her family (particularly Chris, Rory and Julian) and the life raft absorbed and ran with. And, on the night, there was a brilliant turnout. Nothing like a bit of ‘if you build it they will come’ with a hefty dose of behind the scenes organisational graft and magic.

And it was a truly great party. The music was fab, the baps and ice cream fantastic. Charlie’s Angels were there along with other school staff, LB’s classmates, friends, family, Parasol, the young dude from Day 41 and many, many more.

What helped make it such a good party was the space. The giant ballroom (Emperor Ballroom) at the OSSC is a legendary space; enormous, vintage decor, opening out onto a patio (right word?) with tables and chairs, a cricket pitch and playing fields. With a good value bar. It’s a space that allows different levels of party going/attendance and young kids/dudes or adults to randomly roam, run, spin, withdraw, play a spontaneous game of footy and/or dance their socks off.

For us, it’s a space in which Rosie stood in for Rich when she was about 12 to hand out medals to the tiny footy team he coached (and she assisted) in his absence. A fear inducing experience she carried off brilliantly. Around the same time, Rich was hoiked out of the enormous line dancing class we went to for being too disruptive. He was made to first stand at the front, then excluded. Last night he returned to the stage in triumph as The Amazing Geoffrey and Kid Rage (aka Rich and Busker John) did a short set of LB’s fave songs to a delighted audience. Their first ever gig together.

It’s also where we held the party after LB’s do last July.

Sad times that the club is due for demolition in 2016. But an epic ‘party night to end all Justice for LB party nights’. In Bletchingdon and Roman Way, Cowley. LB would have loved it.