A less hirsute rotation around the sun #hairhack #JusticeforLB

July 2, 2015 1 comment

Today it is a year since my #hairhack, that’s one full rotation of the sun and probably my least hirsute one yet. I wanted to write a blog post, partly to share some learning and mark a year on, but mostly to update on the two causes that I shaved my head for in the first place: Rowcroft Hospice and JusticeforLB.

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So what learning do I have to offer from the last year and shaving my head?

1) It really doesn’t matter I may be at risk of stating the obvious with these learning points, but it is a revelation and a relief to know so clearly that it doesn’t matte whether you have hair or not! I’m aware that I chose to lose my hair, and many have less choice available to them, and may therefore feel very differently about this, but, for me it is somewhat reassuring to remember that it doesn’t matter what your barnet looks like.

2) It saves more time than you realised I am not someone who could ever claim to be vain but it is amazingly liberating not having to wash and dry and comb your hair! I was somewhat worried that being bald would result in my paying more attention to my appearance overall, but am relieved to say this wasn’t the case (see point 1).

3) Few people care as much as you think they do or perhaps more accurately, wish they do. In some respects that’s a good thing, no-one wants to be judged for having crap hair, but in other situations it’s not so great (see below).

4) Kids are like transparency and honesty litmus paper the only people who came straight out and asked me why I had no hair were kids; I was mistaken for a bloke on three occasions, once in a swimming pool, once in a bar and once in a restaurant. The bar/restaurant situation was slightly more awkward because I just ignored it and tried to make light of it. The swimming pool situation was by far the easiest to laugh off because the guy’s kids (who he’d told to move out of the gentleman’s way) broke into full scale hysterics.

5) Perspective is everything as much as we may imagine we know something, or think we can empathise, there is nothing like real life experience of a situation for hammering it home. Perspective is key, as someone who has spent a lot of their life dealing with evidence-informed practice I do tend to triangulate a lot, looking constantly for additional sources, trying to find rationality even in the deepest dark depths of madness. One thing that I’ve had reinforced time and again over the last year is that perspective is everything, what I find heart-breaking/unacceptable/beyond comprehension is just shit luck/management/system failure to someone else.

So, what of the causes behind my shave? Rowcroft Hospice are going from strength to strength in their profile raising, next month they have a unique opportunity for local people to walk or run the new bypass when it opens. I’m optimistic that raising their profile and getting people talking about their services is as important as any funds that they raise.

The positives of Dad’s death have been driven home yet again over the past couple weeks as I followed Amanda Palmer’s sharing of her friend Anthony’s death, this post the day after the longest day of the year is a great starting point if you’re interested; her tweets and blog posts will hopefully have opened up conversations about death and dying for many who would not normally consider it. It reminded me of what a good experience we as a family had as Dad died. He wanted to die at home and we were so very privileged that we were able to achieve that with Rowcroft’s support.

The depth of our experience has also been brought home in my reflections while reading a book last week, Marion Coutts’ The Iceberg: A memoir. Wow, what a book. Documenting her husband, Tom’s life and death with a brain tumour, I would recommend it to anyone who works in health or social care. A hugely bold claim I know but it is beautifully written and describes the agonising reality of your life changing one day and the marrying of Tom’s decline as their son Ev grows and develops. I could have highlighted half the book there is so much sense in it and there were many times when I nodded along remembering and paralleling Coutts’ experience and offerings and reflections on life. There is much of what Coutts writes that touches on liminality and living in in-between spaces, in her case knowing death is imminent but not knowing when; it got me thinking about the space that JusticeforLB has occupied over the last twelve to eighteen months.

Which brings me onto my second reason for shaving my head, to raise funds and draw attention to #JusticeforLB. It is not my place to speak for Sara and Rich or any of LB’s other friends and family members, neither is it my place to speak for the campaign, this wonderful collective outpouring of love and outrage, but as I sit here in Sara and Rich’s kitchen typing this blog post (and finishing it on a train home from the LB film premiere this evening) I wanted to share how I feel.

If I’m brutally honest this isn’t exactly easy to share; I’m wary of being accused of being too pessimistic or putting a downer on things; I don’t want to be seen as doubting the absolute relentless brilliance of a totally organic, accidental and ever evolving campaign; I also don’t want to give any of the social media surveillants at Sloven any hope that they’re winning (you’re really not and you’ll never meet anyone as stubborn as me when trying to right a wrong); that said if I’m totally honest with you all, I feel deeply sad.

I feel sad that so much energy, time and love has been put into something that so far seems to show no real, tangible, actual difference. I was talking to Bryan, ‘Lord’ Kevin Preen and Michael ‘The Godfather’ of My Life My Choice tonight, one of the eternal springs of hope and optimism comes from the awesome MLMC crew. We reflected on tokenistic, half apologies and attempts to show willing. We discussed that there are good people working at Southern Health and we agreed that while bad things can happen, the way in which those responsible in Southern Health and Oxfordshire County Council, have continued to behave *since* LB’s death is unacceptable. Michael listened for a bit and then pronounced that the problem is ‘they’re scared of the truth’. And ain’t that the truth. The inability of those ultimately responsible to hold their hands up, admit their mistake, meaningfully apologise and make sure the provision provided to learning disabled people, sickens and saddens me.

Just this week Dan and Rebecca reflected on their trip to Glastonbury and how they found hope for the future there; I’ll grab hope wherever it comes from, but for now everything just feels a bit futile, getting justice feels a bit like trying to nail jelly to a tree.

I feel sadness, just deep sadness that it is now almost two years since LB died and we’re still not really any closer to getting Justice. I feel humbled and privileged and grateful that Sara and Rich and Tom and Rosie and Will and Owen have welcomed me into their home and family, but I’m starting to feel like a fraud. Make some noise I said, we’ll work together to get justice I promised. Almost eighteen months on I’m concerned that I’m becoming part of the fabric trapping LB’s family and friends in this awful, in-between, half-grieving, non-justice liminal space.

Coutts talks about how there are no outward signs when someone dies:

Perhaps the one cruelty of this story is that after this, when I look on to the garden, it will look the same. There will be no outward sign. At death the world does not alter: no shift of earth or change of colour, no noise, no shimmer of light, no falling or collapsing of physical objects. The tree standing there will still stand.

A few days after Dad died I wrote Life goes on reflecting on how life continues, as it always has, around and about you, even though yours feels like it will never be the same again. Here’s the thing, we can’t let that happen with LB. His death must be marked, if not in real time, now in a legacy. The effort, energy, love and commitment shown by his family, friends and JusticeforLB supporters can not be in vain.

I must turn this deep sadness into some sort of fuel, I know that, but right now it feels altogether futile.

Almost two years since LB’s life was brought to a sudden, brutal end; a year since my hair was hacked off and it feels like we’re as far away from getting justice as we’ve ever been. Which brings me back to points three and five above, learning from my less hairy rotation around the sun, few people care as much as you think they do and perspective is everything.

Oneyearon_1 Oneyearon_2I’ve uploaded one year on pics, taken in the loo at the film premiere tonight, because I know if I post this blog without them it’s the first thing someone will ask!! Reckon it could be waist length before we get any meaningful justice!!

 

Youth of today #cholangiocarcinoma

May 10, 2015 1 comment

Seven and a half years ago I learnt about a bile duct for the first time; in the days running up to my Dad’s 60th birthday he’d been a bit itchy and had started turning yellow. An amazingly astute GP (with personal experience of what was to come), swift turnaround in our local hospital and expert opinion following numerous tests from a regional centre, meant that a few weeks later Dad was diagnosed with bile duct cancer. I’ve written here before that someone once told me the cancers you need to worry about are the ones with the long names, the more syllables – the more worrying, well to give it it’s full name, bile duct cancer, or cholangiocarcinoma, has 8 syllables (to save you counting).

Bile duct

OK, ignore the sketchy nature, this isn’t medical advice or an anatomical textbook, this is just a scribble that I remember being drawn for us on one of Dad’s first consultations. It was drawn many times after that, the bile duct is that innocuous stem, it drains bile (that digests fats) from the liver, joins the gall bladder, and drains out through the bowel (I think). Dad’s was blocked, initially the hope (our greatest hope) was that it would be a gallstone blocking the duct, but no, investigation showed it was a tumour. The treatment that followed is documented elsewhere on this blog, I’ll not go into it again, suffice to say after five years of life with cholangiocarcinoma, my amazing Dad died in November 2012.

In all that time I never met anyone else who knew about bile duct cancer (other than the staff of course). At the time Dad was diagnosed there were 1,000 cases each year in the UK, current statistics from AMMF suggest it’s now 1,800 cases a year. Still, exceedingly rare. So, imagine my surprise/horror/heartache when one of my oldest mates from school got in touch just before Christmas to say her Mum was ill, and it looked like it was bile duct cancer.

Penny’s Mum is amazing, she’s shown an indomitable spirit that characterised my Dad’s journey. In a bizarre twist of fate, this blog that I wrote as part therapy, part record and part splurging of a different perspective of this disease, is suddenly being read by one of my nearest and dearest.

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Now, back to the point of this post, my gorgeous, amazing and wonderful godson, Dylan (Penny’s son) has shown an awareness far beyond his 11 years since his Nan was diagnosed.

Today he is walking 10 miles along the Devon coast to raise money for AMMF, the UK’s only cholangiocarcinoma charity. He set out to raise £200 and yet today he has smashed past £1,000, over five times his target. I’m off to meet him and his Mum at the end of their walk, but before I set off I wanted to share this post with the world, we hear so much shite about the youth of today, their bad behaviour, lack of aspirations, laziness, selfishness, phone/computer obsessed nature. Dylan is none of these things, he’s an amazingly caring, cool and kind young man. He’s smart beyond his years and someone his Mum and his Nan can be bursting with pride over. If he’s our future, I reckon we’re in safe hands.

If you read this and fancy throwing a couple quid in Dylan’s direction, I know he’d appreciate it, and I know that AMMF would too. If you’d like to find out more about their work, click here, and if you’d like to donate, click here.

I hope that no-one else I know ever has to face cholangiocarcinoma, but I know if they do, every penny spent on research and support into it will help. Raising money and raising awareness is equally important, so thank you for reading and please share if you can.

Secrecy, transparency, purdah and the illusion of candour #ADASSspring #JusticeforLB

Earlier this week Sara posted a blog post titled State agents and lives on hold. In it she updates on the tiresome slog to get accountability and answers around her son’s preventable death, in an ATU. LB drowned in the bath, something an independent report found to be entirely preventable, fourteen months ago. Still no accountability for that. She also shared on twitter this week that there had been yet another delay with sharing findings into a second, broader investigation, into what happened. This delay is apparently due to purdah, and sensitivities around sharing information.

OK, so what’s purdah and why does it matter?

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Yup, in case any of you weren’t aware, this term that is being bandied around the 2015 General Election is about as offensive and oppressive as they come. In the pre-election period it is used to ‘describe the period of time immediately before elections or referendums when specific restrictions on the activity of civil servants are in place’.

OK, so why am I banging on. Well, I believe that the General Election has been known about for years now, the date was not mystically plucked from the sky a week or so ago. To that end it was well known when the General Election would take place, and therefore any sensible person could ascertain that a period of pre-election clamp down would happen before it. So, when NHS England commissioned the second investigation into LB’s death and the circumstances surrounding it, it was reasonable to assume and anticipate the General Election getting in the way. Except no-one did.

An increasingly fragmented and fragile grieving family, pummelled by the technocratic and bureaucratic machines of the NHS and state systems, were delivered another punch to the throat last week, when they’re already gasping for breath. The subtext goes something like this:

No sorry, you can’t hear what we now know until after the election, wouldn’t like to upset the voters. In fact let’s be honest, we’d rather you disappeared behind that curtain over there, stay out of sight and stop kicking up a stink. It’s terribly unbecoming you know. The NHS is on its knees, social care has an even bigger funding gap, we don’t need your type causing trouble.

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Leave that there and skip ahead to today.

The 21st Century has made it to ADASS Spring Seminar, a gathering of a hundred or so Directors of Adult Social Care, I’ve no idea if John Jackson, the Director for Oxfordshire will be there, but no doubt if he is there will be much consoling of what a difficult job it is to deal with grieving and complaining families.

Who am I kidding, no-one/few there even know about LB, or what happens, or would care.

Thing is when you’re at the heady heights of Directors you genuinely are faced with challenges and errors and tragedies* like this all the time, so why would LB matter? He’s just another, not fully human, faceless young man with a learning disability.

*Preventable deaths aren’t tragedies, something that shouldn’t have happened and could have been stopped wasn’t written in the stars and caused by cosmic alignment

After the Winterbourne View panorama, ADASS and many others of the great and good signed up to a concordat to ensure things would change, then…. tumbleweed. An impossible job, too big a task, unclear leadership – so many excuses offered and so little change.

The reality is of course, I understand, really I do, at least some of the challenges of being a Director. I have skirted on the edges of social care for a number of years, sat in meetings and workshops, attended the aforementioned Spring Seminar on several occasions and even had the privilege of shadowing the simply awesome Peter Hay a few years ago (and a better example of a Director you’d be hard pressed to find).

I believe it’s a hard job and most work incredibly hard at it. Pop along to any Social Care Curry (we’ve had 80 now) and you’ll get a sense of the commitment, passion and belief throughout social care.

I’m reasonable enough to understand the benefit of a commiseration/consolation/letting our guard down opportunity where grieving and difficult end users are kept behind a metaphorical curtain. I just don’t see why my taxes should pay for it, or for the time of people attending, and particularly for the NHS England CEO to attend. It’s not even like there will be much challenge, as David Brindle so brilliantly recalls:

When sector leaders last met in force, at the National Children and Adult Services conference last autumn, they seemed to get a bad case of stage fright and swallowed most of the home truths they had sworn to tell ministers to their faces. Health secretary Jeremy Hunt and communities secretary Eric Pickles must have felt as if they had entered a lion’s den only to be savaged by poodles.

I am not anti-Directors, anti-ADASS or anti-NHS England, but I am anti-secrecy and cover up and every day I become a little bit more fervently anti-oppression and destruction and technocratese. I am reaching peak candour level, where cover up and hypocrisy are close to tipping me into new realms of honesty and ranting!

I can not express in words the damage that is being done to a family I care about, and we’re not talking about the original pain and grief (I can not imagine what that must feel like) but this is ongoing damage, pain and new harm. Seems to me like some of the NHS England processes need safeguarding alerts raised about them.

Where does ADASS come in? ADASS are keen to point out at the moment that they are a charity, their charitable aim is to:

We are a charity and the association aims to further the interests of people in need of social care by promoting high standards of social care services and influencing the development of social care legislation and policy.

If ADASS are about furthering the interests of people in need of social care they have a long way to go on this issue. ADASS and social care more generally have been woefully silent on the issue of #JusticeforLB, with notable exceptions especially amongst some providers. Perhaps they’re busy listening to families thoughts on why they are ignored. ADASS are holding their Spring Seminar get together, in this pre-election period, and Simon Stevens, the NHS England CEO, the same one who is apparently doing everything in his gift to ‘change the services learning disabled people get’ will be speaking.

So suddenly those pre-election rules that prevent a grieving family finding out what happened to their son, can be relaxed for a bunch of Directors?

Seems we’re light years away from transparency and candour being things that are embodied, as opposed to words that are kept somewhere in a policy document on a dusty shelf, behind a curtain out of sight so as not to bother people. Not sure whether it’s hypocrisy, double standards, innocent oversight or something altogether different, but one thing I am sure about is that it leaves a bad taste in my mouth.

Why exactly should adult social care directors be privileged over a grieving family?

A letter to my niece on her fifth birthday

Dear Libbie,

It’s now a few weeks since you turned five and having spent the day together I decided that I’d better revisit the letter on your birthday tradition! So what more can I offer after this from your third birthday and this from your fourth!

The big change in the last year is that you have started school! You love it, love studying, love impressing your teacher, never stop sharing stories about what you’ve learned and who’s in your class. You’ve got a great memory and fantastic verbal skills and an eagerness to learn that I hope you’ll keep for years to come. You’re inquisitive, demanding and relentless, all of which will stand you in good stead as an adult, even if people think they’re somewhat less than ideal in a child of five.

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So what can I share this year Libbie? Coming up are ten things, probably not the most important things but they’re want came to mind:

1) Try new things. It’s easy to still be trying new things when you’re only five, there’s still so much you’ve not done before. That said it is also easy to keep doing some things because they are easy, or you are good at them, and if you’re not careful you will end up doing those things instead of new ones. Watch out for that, don’t play it too safe too much of the time. Keep trying new things.

2) Never stop asking questions. This was number two for the previous two years and to be honest it feels that important it’s still worth repeating! As you get older people play this trick on you where they suggest asking questions is dumb because it lets on that you don’t know something. That’s ok, in fact it’s more than ok, it’s essential. People who pretend to have all the answers are just pretending. Even your teachers and your Mum and Dad sometimes.

3) Sit or stand still and stop talking. Just occasionally it’s useful to stop talking and listen, to others, or to silence. Rarely is there silence though, often when you stop talking you hear things you didn’t know were there before, like birds or nature sounds, a bit like the donkeys in the next field today. Sometimes it’s important to stop talking and let Phoebe talk too, I know you want to be helpful and share what she’s trying to say for her, but sometimes you should just stay silent and let her have a go herself. That’s how she’ll learn and get better, much like you did when you were little.

4) Care for yourself. You’re becoming a big girl now, you go to school and get yourself up in the mornings and do lots of things on your own that you couldn’t do before. All of that is great, but the more you do for yourself without mummy or daddy’s help, the more you need to look after yourself. One of the most important things you can do to look after yourself is to get a good night’s sleep; so only get out of bed if you need the toilet, otherwise you don’t play games or read books when you are meant to be sleeping, or you’ll be too tired to learn and have fun the next day.

5) Care for other people. You are a great big sister Libbie, and you care about your mummy and daddy and Molly and grandma and Hugo and Auntie Georgie and Auntie Alex and lots of other people. It is really important that we all look out for each other as we get older. Sometimes people pretend as you get older that it is all about yourself, that you come first and that is all you should worry about. To be honest Libs, this is a lie. We all need each other, it’s called interdependence, no one can survive entirely on their own, so you keep caring for other people.

6) Care for animals. You are a very lucky girl because you’ve grown up with Nuby and Hugo, even though Nuby died. You also love Mogster when you visit Auntie Georgie and you’re very proud that you’ve an adopted Guide Dog and your blind donkey Teddy. Animals rely on us humans to look after them, to care for them, feed them and most importantly be kind to them and love them. You might not always be able to have your own pets at home, but you can always be kind to animals and remember very few animals will hurt children, usually they’re more scared of you than you are of them, so walk don’t run, talk don’t shout and never, ever stroke a doggy unless the owner has told you that it’s okay to do so.

7) Make believe. Today when we were in the park a little boy told you that it was silly that you were pretending to round up the donkeys. That little boy was wrong Libbie! It wasn’t silly, it was make believe and that’s ok. It gets a bit confusing as you get older, people say that you shouldn’t play so much, or make up stories, that you should just tell the truth. When you’re an adult it will be important to always tell the truth, and even as a child it’s important not to tell lies because people won’t trust you if you do. That said, it is okay to play make believe, and to round up the donkeys and drive the tractor, playing is good for the soul and helps you develop ideas that other people won’t have…..which is really important when you get older.

8) Remember that you can be whatever you like when you grow up . When Auntie Georgie was little she wanted to be a skip lorry driver. Uncle Richard used to take her to work with him when she visited, and her cousin Paul would take her out in the cab of his lorry and she’d drop skips off and collect other people’s rubbish with him. I loved it. I thought it was the best job, you were helping people, you got to see lots of things, and occasionally Paul would let me pull the leavers and press the buttons to move the machinery. As I got older I decided to do different work, but a little bit of me would still like to think I’d have been happy as a skip lorry driver. I have lots of happy memories of those trips. Today you were driving the tractor at the Donkey Sanctuary (make believe like a good’un) and you said that you might like to be a tractor driver when you’re older. I think that would be a great job, hard but good honest work. Remember you can do whatever you like when you grow up if you work hard enough at it.

9) Sing and don’t worry too much about the words! When you were preparing for your christmas nativity you had to learn lots of songs off by heart. You were really good at it but you sometimes worried you would get the words the wrong way round. Today you laughed at Auntie Georgie because she sang the wrong words to a song. That’s ok Libs, I don’t mind you laughing, I love making you laugh, but I also don’t mind getting the words wrong because I enjoy singing so much! Auntie Georgie often sings in her car, and I bet most of the time she gets the words the wrong way round, but that’s ok. Sing often Libs, like you and Mummy and Phoebe do together and don’t worry too much about getting it right. Being perfect is over rated.

10) Forgive generously and say sorry. We all make mistakes Libbie, even grown ups, in fact grown ups make lots and lots of mistakes, they just spent lots of time covering them up and wasting energy hiding them so you wouldn’t know. This is so silly Libs, it wastes energy and is confusing for people and upsets people. Don’t worry about occasionally getting things wrong, and don’t worry if people make mistakes to you or are mean or hurtful sometimes, we all have bad days. The important thing is to apologise, say sorry and really mean it, and do everything you can to make it right or not happen again.

11) Eat fruit and vegetables. What you eat now when you are growing up will make a big difference to your health for the rest of your life! That’s a little scary really, but it is important. You said today that you didn’t like fruit! That’s quite a bold statement because there are lots of different types of fruit and I’d be very surprised if you don’t like any of them!! You also drank daddy’s special juice (which is actually fruit squash) so you might like it more than you realise. It is also worth remembering that your taste buds change as you get older, so some things that you might not like today you may like tomorrow or next week, the best way not to miss out is to try them (see rule one).

12) Break (some) rules. This is a tricky one, and you can only break some rules, some rules are definitely not for breaking, like the law and what mummy and daddy say and what your teachers say. Occasionally though it is worth breaking the rules a little bit, like Auntie Georgie intended to write ten things, and has written ten things for the last two years, but this year we have twelve things, and that is okay!

So there you have it, a few thoughts for your year ahead. Not that you need them really because you’re doing just amazing yourself.

Lots and lots of love,

Auntie Georgie

xxx

Bundo marvellous!

Just a short post from me, I don’t normally blog about food (despite loving it in a relatively unhealthy way), but last night I was in a hotel room in Leeds and sent a tweet asking for recommendations of places to eat in Leeds. The responses reminded me of all that is ace about twitter, the genuine spontaneous connectedness and knowledge sharing. The options suggested were diverse and plentiful – check them out here. Initially I’d not even been sure that I could be bothered to go out but felt I needed a little adventure.

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I plumped for Ian’s suggestion of Bundobust because it sounded interesting, was nearby, and to be blunt I had little to go on, he’d not offered any reason as to why…which got me interested.

What a result. Described as the home of craft beer with an Indian street kitchen – it really didn’t disappoint.

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It had a sort of quirky feel, a sort of indian wagamamas meets community centre meets trendy pub. It was early evening when I got there and it was already busy, the lovely woman serving/seating people explained it was a bit of a free for all with seats, just hover and grab one, but there was also a yard out back with shelter and outside heaters (it’s way nicer than that makes it sound). Given I was on my own and didn’t really want to take up a prime table spot, and I was hank marving, I grabbed a pint (Camden Pale Ale – very nice, not that I’m a connoisseur) and headed for the yard to skim the menu.

Overwhelmed with choice, not because there was too much but just because it all sounded so amazing it was hard to choose, I took the menu advice (1 portion for a snack, 2 for lunch and 3 for dinner) and plumped for Onion Gobi Bhaji Bhaji, a Vada Pav, and Dhal and Rice.

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It was amazing, seriously good food. The sort of food where you can taste all the flavours and you feel like you’re nourishing your soul, not just taking on fuel!! I couldn’t finish it all so some of the potato burger was left but I couldn’t leave any of the black lentil dhal, in fact if/when I return I’ll just order a bucket of it, it was that good.

The food was awesome, the staff friendly and helpful, free wifi and people watching galore (two first dates – one more of a success than the other, a couple of hipsters talking brewing, and a gaggle of work colleagues). The only dampener on the whole experience was the seriously arrogant guy who ordered before me at the bar. He barked his requests at the barmaid, didn’t stop fondling his phone, failed to make eye contact with her as she passed him the card machine and didn’t even say thank you. I hate rudeness and was sorely tempted to say something, but decided to let it go, but please people we all know it’s great to be connected but please never be such arses at a bar. Hats off to the almost saint like customer service skills on offer.

If you ever find yourself in Leeds looking for lunch or dinner, you could do far worse than a trip to Bundobust. Nom nom nom.

 

 

Shaking up the system inertia

February 7, 2015 1 comment

First blog here in an age, so happy new year everyone! This week has seen the publication of two reports into the appalling standards of care for learning disabled people in the UK. The National Audit Office published their investigation into the utter failure to transform care, as promised following the abuse at Winterbourne View being exposed by Panorama back in 2011. You can get a link to the NAO report on the JusticeforLB blog, where we also published our own audit of activity over the last 11 months.

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Following the Verita report into Connor’s death finding it entirely preventable (he died because of poor standards of care and poor leadership), refusing to be silenced or take no for an answer, we have relentlessly sought to actually improve care for learning disabled people. Not just talk about it, not plan it, not seek resources and funding for it, but just get on with it. There are many days when Sara and I have questioned if we’re making any difference at all, wary of getting sucked into the system inertia that weighs like a heavy invisible blanket on so many providing ‘care’ for learning disabled people, quickly smothering any radical or new thought. People tell us we’re making an impact, we met this week to discuss the feedback to the first draft of the LBBill and there was stacks of it, between it and/or the promised Green Paper, I’m optimistic some improvements can be made.

I’m still not sure, never sure though, that it’s enough.

Alicia Wood from H&SA blogged yesterday comparing the NAO report and the JusticeforLB report. Her blog led to conversations on twitter this morning about how we can actually change the system; whether existing solutions are enough, or indeed whether the existing system and those engaged with it (read propping it up) are part of the problem.

Personally I’m so fed up with seeing the CEO of Mencap (for one example) publicly ringing her hands about how difficult things are (on Twitter, on Newsnight or in The Telegraph), while simultaneously receiving funds to change this sort of thing. A quick squizz at Mencap’s annual report 2013-14 shows £7million was spent last year ‘engaging and influencing key stakeholders‘ yet no results are offered for the return on this investment. Sure the annual report includes some statistics of numbers of people attending events and grandiose stories of their role supporting bereaved parents to share their pain….but so what? Where has it got? What difference does it make?

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Next week the Public Accounts Committee will hear evidence from Stephen Bubb (a man appointed because he wasn’t an expert – some thoughts on that here), a CEO of a learning disability charity (Challenging Behaviour Foundation) that trades on it’s niche knowledge (no impetus to make this a mainstream issue) and a guy that used to work for Mencap and now advises the same charity, CBF. They’ll also hear from professionals employed to lead this diabolical system from the Department of Health and NHS England. Sadly the closest learning disabled people are likely to get to that committee is the stock photo used on the website.

I’m a relentless optimist so we’ll see what comes out of next week, but asking those leading a system so badly (as documented in your own report), what they’re going to do to improve things, four years after they promised and failed to improve things, feels a bit circular to say the least. Especially when it’s clear (see Alicia’s blog post mentioned above) that the challenges the NAO have unearthed were clear at the beginning, and shared with colleagues responsible.

So, what solution am I offering for shaking up the inertia? Well there are loads of ways it could be done, read the JusticeforLB audit report for what we’ve tried so far (we being the royal, collective, amazingly crowdsourced, everyone equal, everyone welcome JusticeforLB campaign). Last week we received some criticism from two disabled people that we hadn’t involved a learning disabled person in a presentation we gave. I don’t want to get into that here now, but I think the audit report stands for itself in how actively involved learning disabled people have been throughout the campaign, but I still know that we could do more.

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The person who had the most impact in the Newsnight report this week (34mins), wasn’t Sara and Rich (although I thought they were amazing), it certainly wasn’t Jan the Mencap CEO, for me it was Kevin from My Life My Choice who talked about feeding his cat and having some grub. You know, normal stuff like you or I do. Not concordats, not strategic plans, not poor data, not lack of money, just keeping it simple and keeping it real, a life like anyone else’s. A chance for Newsnight viewers to relate to Kevin, as someone like them, not as someone who is sooooo extraordinary he needs a charitable spokesperson to talk for him.

I’m not suggesting for a minute that we should leave things to learning disabled people to sort out themselves, although at this stage performance so far has been so dire maybe they’d make more progress. I am suggesting that the media should have more access to learning disabled people and that we should hear from them routinely. Foundation for People with Learning Disabilities has a campaign about this:

I’m talking about unfettered access as well, not just the ones who speak on message and protect the charities own agendas. We were contacted and invited to respond to the NAO report by several media teams in the run up to last week. Time restrictions meant that Newsnight was a yes, the others were a no, but what became clear was that the media aren’t easily able to access learning disabled people or their families, without attempts at upwardly managing the message by those within the system who are already complicit in the lack of progress. I’ve heard from two different sources that Mencap refused to introduce them to people to speak to, unless there was a slot for their media spokesperson. The people who shared this have no reason to lie, I wasn’t involved in the discussion directly so have not seen it with my own eyes/ears, but it certainly didn’t come as a surprise. This isn’t just about Mencap either (although Sara has brilliantly analysed why they’re failing people by their media responses), it’s bigger than them.

It’s time learning disabled people were more routinely involved in (read: got to make) decisions about their lives, in speaking about their lives, and in bringing about this long, long overdue change.

Pre-inquest review #JusticeforLB

November 25, 2014 1 comment

Didn’t want the sun to set on today without capturing something on paper (actually the sun set hours ago and this is just me and my keyboard, no paper involved, but lets not get caught on details!). Today I went to Oxford for Connor’s pre-inquest review hearing.

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I hadn’t set foot outside the station before Agent T tracked me down, completely unplanned, she’s spotted my diabolical hair, an occupational hazard of shaving your head to raise money for legal fees!

We decided to head to Yellow Submarine (an awesome cafe run by people with learning disabilities) for a cup of tea. An award winning cafe no less, they could teach the HSJ a thing or to, but I digress.

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Shortly after I met Sara and Rich and I grabbed a baguette before we headed for County Hall for the pre-inquest review hearing. Not sure if it was a hearing or a meeting really, it involved the Coroner, a court, two legal teams and a family devastated at their loss. The court room was adjacent to a cafe, so you could hear the gentle tinkling of glasses as life continued as normal on the other side of the door.

I don’t spend a lot of time in court and was struck by some of the archaic practices. We all had to stand as the Coroner entered, something I’ve not done since school more than half my life ago, but at least we didn’t have to recite ‘Good afternoon Mr Coroner’. Having asked permission to live tweet the proceedings we were declined, so copious note taking ensued. There were some gut churning, head reeling moments, the most severe of which was Sloven Health trying to claim (again) that Connor’s death was due to natural causes. We don’t need to get into that here, suffice to say that the Coroner was clear that in no uncertain terms death by drowning is not natural.

So what is my immediate reflection after today. I was fully prepped to feel despondent, the challenge with seeking Justice, is that no matter what the facts or truth is, there appears to be an awful lot of mud slung to try and muddy the waters. No matter how hard we try, Sloven Health are never far from a delaying tactic, an untruth, an accusation.

The outcome of the pre-inquest review was that the Coroner would go away and think (a good outcome I suspect) and he’ll come to a decision in the next two weeks about the full scope of the inquest. To that end there was no resolution today, no progress, and yet more hurtful untruths.

Yet as I sit here tonight typing this I feel positive and hopeful. It could be naive optimism (I’m relentlessly hopeful), or perhaps it could be from something more concrete than that. I had the absolute privilege today to meet Charlotte and Caoilfhionn, who make up two thirds of the legal team dedicated to securing #JusticeforLB. I sat in a pre-meet for an hour and can honestly say I’ve rarely felt I’ve been in the company of such professionals! They are a dream team, meticulous and knowledgeable, with right on their side – a phenomenal combination.

I also got to meet Rosie (Connor’s sister) and Agent T (his aunt). There were also lots of other family members there to support, along with three members of the press. The day after Stephanie Bincliffe’s inquest, and the day before the Bubb bull is published, it would be easy to feel despondent and helpless. But I don’t, I feel optimistic and hopeful. Nothing we can do will ever bring Justice for LB, but hopefully everything we do will improve things for all other dudes.

Sara and Rich you are remarkable. Thank you for sharing so much of yourselves with me, and with us, your collective campaign support.

It’s an honour and privilege to be part of this, and to be acting for real change, in LB’s name.

In answer to the Yellow Submarine cafe note on my lunch, it wasn’t quite a perfect day, but it was much, much better than I expected. Onwards #JusticeforLB.

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ps Apologies for the Bubb-esque tone of this post, I’m not normally so obsessed with food and cafes but I wanted to end with this pic so some context was needed!!

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