Week 15: The Tale of Laughing Boy #107days

So we’re here again, the end of #107days for the second time. It is hard to believe it’s now two years since LB died. There really aren’t any words. Today we’re pleased to be able to share The Tale of Laughing Boy with you.

Produced by the brilliant My Life My Choice and Oxford Digital Media, with funding from Oxford City Council, grab a cuppa and sit back to watch.

Thanks to each and every one of you who have supported #JusticeforLB these past two years and both #107days campaigns. As Sara says of the campaign in the film:

‘These people haven’t met Connor, they don’t know Connor and yet they recognise the injustice of what’s happened, they recognise what a quirky and colourful individual he was and they’re acting, and they’re prepared to say this is wrong and join in. I think that’s absolutely amazing, it’s been so heart warming and so reassuring that so many people have stepped up and done all these different things and got in touch, and are really moved by it all. They just get it, I think that’s great, that has meant the world to us’.

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As for Sara’s hopes for the future:

‘My beyond wildest dreams would be that… we didn’t even have to talk about learning disabled people, because there wouldn’t need to be that division, because everybody would have a right to live where they choose, everybody has an imagined future, and the distinction between being learning disabled and being non-learning disabled would become sort of irrelevant, because it isn’t an issue’.

Final word goes to Rich:

‘In many respects the world would be a lot better place if we all behaved more like Connor and less like not-Connors; his sort of approach to life was so straight forward and simple… uncomplicated… you just sort of think I wish I could be more like that, I wish we could all be more like that… we should all be more like Connor and people like Connor and the world would be a much better place, and it would be a much more inclusive place, and actually we might all enjoy it a bit more.

Imagine, just imagine for a moment…. and ACT!

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Week 15: The best dude #107days

We’re coming to the end of #107days second time around. Last night we had the premiere of The Tale of Laughing Boy, a 15 minute film about LB that we’ll share here on Day 107 tomorrow. Our penultimate post is from Tom, LB’s younger brother, sharing his thoughts and reflections. The photo is a still from the film, pencil out 15mins of your weekend now to enjoy it. For now, over to Tom:

I’ve always wanted to write a guest post, it has always striked me as something I should do. It’s the week of the film and having taken part in the film, my mum thought it would be fitting to do a post on that.

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From the minute I heard about the film I was already 100% on board, obviously because I wanted to tell the great stories I have collected from 13 years of living with him and also maybe because I love films… but mainly the first reason. I was surprisingly comfortable in front of the GIANT CAMERA!!!! I think it’s just that if you know the stories from the countless amounts of times you’ve told them and you are talking about something you really care about then your not going to be nervous because you are so sure of everything you will say before you say it.

In some ways it’s fun because you aren’t just telling a story, you are reliving it in your mind, and you feel the same emotions you did at the time. Which, when discussing Connor, is pretty much constantly laughter and happiness.

I always remember Connor’s bus mat… to the average eye it was a map of a town with some roads on it, but to Connor it was Sandford, a huge city with a fully operational bus system that never failed. It had everything a city needs, shops, houses, animals, pedestrians and even a playmobil harbour. Each with it’s own set of strict rules on how it operates and how it can be ‘played with’. Having shared a room with Connor for 10 years or so and listening to the intricate thought process that went in to controlling a town of this magnitude, I can honestly say their is no city better than Sandford and I’m pretty sure I would live there if it was real.

That wasn’t Connor’s favourite city though, London was by far his favourite place on Earth. He loved it, I think it was the transport system to be honest, the idea of a city with a bus going pretty much everywhere was his dream place. One birthday of his we went to the Tower of London, his love of history and London combined, what could go wrong. Well, apart from the fact we never actually got in, huge amounts of traffic meant that after 6 or so hours on buses, when we finally arrived at the Tower of London it was closed. All us kids were so annoyed “all that travel for nothing!”

It was Connor my parents were worried about though, how would he react to the fact we weren’t actually going to the Tower. He did not care one bit, he spent the whole day in London on buses, a perfect day for him. That’s one of the amazing things about Connor, he is so easy to be pleased and enjoys such small things, and it really is amazing.

I read a lot of the stories about how people who never met Connor feel like they know him and that they love him through the tales on the blog, and this really amazes me. To me the idea of someone you don’t know changing your life tends to be a celebratory, writer or film maker. I love to think of how Connor would react if you told him hundreds of thousands of people were reading stories about him and laughing.

I picture him smiling with glee then turning away from his laptop and saying:

Did they like it, Tom?

yeah, they loved it

“Why?”

At the time this question would annoy me so much…

“Idk Connor!!! the stories are funny”

He would always ask ‘why’ to everything and my 12 year old brain ran out of reasons pretty quickly. But now I know what I would say:

“Did they like it, Tom?”

“yeah, they loved it”

“Why?”

“Because you are the best dude in the world!”

Week 12: Sorry seems to be the hardest word #107days

This week, Week 12, we’re focusing on saying sorry. To kick us off a post from Sara sharing her thoughts and experience.

Saying sorry. A fairly straightforward concept with a handy NHS guide for those who might struggle. We’d planned a week on this topic as it’s fundamental to helping families deal with the unexpected and preventable death/serious harm of a family member. A swift, heartful and genuine apology probably is the most valuable tool the NHS has, in terms of heading off lengthy, painful and ultimately costly battles with families. Sadly, this doesn’t seem to be widely recognised.

This issue is particularly timely as the template response circulated by some Conservative MPs to constituents’ requests for support for the #LBBill includes a paragraph about Sloven and their unreserved apology for LB’s death. This is lifted from the statement by Katrina Percy, CEO of Sloven, on the day the independent review by Verita was published back in February 2014.

Deeplysorry

This apology was made seven months after LB died. Up to this point, I [not our family] received a ‘I was deeply saddened and sorry to hear of the death of your son, Connor’ from the Acting Chief Exec on July 11th 2013. An exemplar non apology. Her sadness comes first, followed by ‘sorry to hear’ and then a second line with ‘sincere condolences’ scattered like confetti. These words are words anyone can say to someone who has experienced bereavement. Not the words you say to someone who has died in your care.

Katrina Percy, the actual CEO, popped up in December 2013 ‘offering my personal and sincere condolences on the death of your son, Connor‘.

Again, a non-apology. Offering condolences is not saying sorry. We had to wait until there was evidence that LB shouldn’t have died before something approaching an apology was made, three months later. Sadly, despite this public statement, and an apparent acceptance of the Verita findings, nine months later Sloven stood in front of the coroner, arguing that LB died of natural causes. Maybe the NHS Being Open policy needs a footnote added to remind CEOs to remain consistent to their apologies.

In August 2014 we received a letter from Katrina Percy that is tooth enamel removing in its toxicity. On the subject of apologies, she has this to say:

Like every single organisation and individual in the world, we are not perfect and on a rare number of occasions we get things wrong, sometimes with deeply distressing consequences. On these rare occasions, my role as Leader is to do everything in mine and my organisation’s powerto offer our deep and sincere apologies, to work with everyone concerned – including relatives and regulators – in as positive and productive a way as possible to learn from what went wrong and to put in place arrangements to try to ensure nothing similar happens in future.

In this regard, I believe it was absolutely right for us to offer our profound and public apologies to you for the death in our care of your son, Connor.

Profound, sincere and deep are just words. Meaning remains absent, sadly. And without meaning you really ain’t sorry.

So this week we will be thinking about saying sorry and apologies. Please share any experiences in the comments section or drop us an email. As we say with tedious regularity, this really ain’t rocket science.

Tongue

Week 11: What to do if your MP wins a golden ticket in the Private Members’ Bill ballot #107days

This blog post, on the eve of the Private Members’ Bill ballot #PMBBallot makes some suggestions of what to do if your MP wins the golden ticket in tomorrow’s ballot (and some of them might be useful even if they don’t).

Thanks to the unstinting efforts of #JusticeforLB’ers across the country, at the time of writing over half of all MPs (333 out of 650) have been contacted about #LBBill. This is a huge achievement in just over a week, and reflects the entirely crowdsourced nature of the Bill so far.

LBBillContacted1-333

Our campaigning is far from over though and we need to redouble our efforts at 9am tomorrow, when the ballot for this year’s Private Members’ Bills takes place. The House of Commons twitter account has been highlighting the role of PMBs and using the #PMBBallot all week, so we’re hopeful that they may live tweet it and if you’re online you can watch it on Parliament TV here!

Shortly after 9am we will know the names of the MPs who will have the chance to present a Bill of their choice to Parliament. As explained in a previous blog on the LBBill site we need one of the top six or seven MPs to take #LBBill for it to have a real chance of becoming law.

Therefore we’re asking all of you to check Facebook or Twitter as soon as you can after the ballot tomorrow morning to see if your MP has drawn one of the ‘golden tickets’, that is to see if they came high up in the Private Members Bill ballot.

If they have, then these are some suggestions of things you might do to get your MP’s attention and persuade them to sponsor the #LBBill:

1) Tweet your MP. While this only takes a few seconds our experience so far is that not all MPs engage with their Twitter accounts (indeed some still aren’t on Twitter). So please do this, but don’t just do this! 140 characters is limiting but please try to get across why #LBBill matters.

2) Email your MP. We won’t win any prizes for originality with this suggestion but emails will go straight to the MP’s staff and experience is showing supporters are getting better engagement from emails than tweets. Explain to your MP why #LBBill matters to you.

3) Phone your MP. You can ring the House of Commons switchboard on 020 7219 3000 and ask to be put through to the office of your MP. Be sure to say you are their constituent, you are calling because you know they have been drawn high up in the Private Members Bill ballot and that you would like them to sponsor #LBBill. Explain why the Bill matters from your perspective. If you can’t reach your MP ask for their researcher.

4) Send your MP a letter. Despite being a little bit obsessed with the power of social media to engage with politics, we also love getting post and think your MP may too. Why not dig out your finest writing paper, or dig in to your stash of LBBus postcards and write to your MP. Be sure to do it quick so it reaches your MP before they decide on who to support. If you have children or artists you’re keen to engage, why not send your MP an LB Bus picture too and explain the significance.

5) Go to your MP’s next surgery. All MPs hold surgeries where their constituents can go and discuss local issues with them face to face. Check your MPs website, look in the local press and find out when their next surgery is to be held. Maybe try to get a group of people together to go and see them. If you are going as a group you might want to contact your MP’s constituency office (as opposed to their office in Parliament) and let them know in advance.

6) Go to see your MP in Parliament. If you contact your MP by email or by phone (see 2 and 3 above) you could ask for an appointment to go and see them in Parliament – and perhaps take friends / a local group with you. If you meet in Westminster you may also be able to get a tour round Parliament!

7) Invite your MP to come and meet you. You might like to invite your MP to come and meet you and your family at home, or to come and speak to a local group your involved in. MPs generally want to engage in their local community and it will help convince them of the need for action if they get an insight into people’s real lives.

8) Hold a #JusticeforLB pop-up picnic or party and invite your MP along. The idea for pop-up parties was first shared back in April (see Action 3 in this post) and we’re keen to ensure everyone, regardless of any disability they may have, gets the chance to attend. This is a great chance for a number of people to get together, have fun and meet your MP in an informal setting.

Even if your MP is not a lucky golden ticket holder, their support for the Bill could be key. The more MPs that are aware of the challenges facing disabled people, the origins of the Bill and how it could improve disabled peoples live, the better. The one key element of any action at this stage, is speed.

MPs will be starting to commit to particular causes in the hours and days after the ballot. So please do contact your MP as soon as possible, even if just by a quick tweet, email, letter or call. You can always follow up with something more creative.

Some resources that might help you are:
– The quick guide to the Bill
– The full text of the Bill
Explanatory notes, which deal with the technical issues
– A film which explains where the Bill came from and what it would do
– A blog from Sara explaining why the Bill would have made a difference to LB
– A blog from Steve explaining why the Bill is needed in the light of the Care Act 2014

You can include links to some or all of these when you contact your MP, but they will definitely need to have the full text of the Bill to hand. You can download it by clicking here: LBBill Draft 2

If your MP has any questions, they can send us an email to LBBillFeedback@gmail.com or tweet us @JusticeforLB and we will arrange for someone from the LBBill Team to call them.

Don’t forget if your MP isn’t chosen at the top of the ballot (a highly likely event) that you can still email or tweet them asking them to contact their colleagues who have been successful in the ballot and support the Bill. Peer pressure is very important!

Finally, there will be thirteen MPs who are picked at 8-20 in the ballot who will get the chance to sponsor a Bill but without any realistic prospect of it having enough Parliamentary time to become law! If we cannot persuade any of the top seven MPs to sponsor the Bill we would be delighted for it to be picked up by any of these MPs as a chance to keep the pressure up. So if your MP is picked in a lower slot please still contact them.

Thanks for your support so far, and for all the work that will follow Thursday’s ballot. Some of you potentially hold the keys to the next stage of making the #LBBill law and are about to have a very important role to play in the campaign! As ever, we could not do this without you, so thank you.

Week 10: 1 in 4 MPs contacted re #LBBill, still 75% to go #107days

Wow, what a weekend of #bankholidayactivism. Ever since the #JusticeforLB campaign evolved/emerged/was born (still not sure which of these is most true) we’ve been blown away by the responsiveness of people. This weekend proved no exception and we’re delighted to now share that slightly over 25% of all MPs in Westminster have been contacted about the #LBBill.

Seriously, that’s 1 in 4 who will know about LB, who will hear about his entirely preventable death, and who hopefully will read up on the #LBBill and lend their support to it. The responses from MPs on twitter and email has been overwhelmingly positive, where they’ve had a chance to engage, and let’s be honest MPs are allowed time off too and given it was a bank holiday and the start of half term for most people, we really didn’t expect to have had pretty much any response.

LBBillContacted_25%MPs

We’re not getting complacent though. As wonderful as it is to see that all MPs in Norfolk and Devon have heard about the #LBBill there are still whole swathes of white on our map where people don’t yet know.

So this is a quick thank you, a mini celebration and a call for further action.

If you are reading this, and you care about disabled people, please take action to contact your own MP and let others know about the Bill and what it proposes. You can read Sara’s post from yesterday for more on what difference the LBBill would have made to LB – short answer is he would probably still be alive today, playing with his footy guys and chatting away to Chunky Stan.

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We need to make sure no other family suffer the same loss that LB’s have, that no more disabled people are denied what are essentially very basic human rights. So please take action, we need to give the #LBBill every chance to be heard in Parliament.

Thank you all.

Week 10: LB and the #LBBill #107days

Yesterday’s post has got us off to a fantastic start with telling MPs about the #LBBill, so thanks to all of you for your help with that. Today we’ve a post from Sara reflecting on LB and the #LBBill.

A while back I was asked by a journalist (could have been on BBC Radio but I can’t remember now) if the #LBBill would have made a difference to what happened to LB. I am really not a natural or keen radio or TV interviewee, particularly when it’s to talk about something so horrific, and this question struck me as simply too sad. I fluffed it.

Now it’s time for action with the Bill, it probably is helpful to think through how the proposed changes to the law could have made a difference. [Howl.] First of all, LB should never have been admitted to the unit. If a range of meaningful ‘in-home and community support services’ were available [Clause 1] I don’t think LB would have become so anxious and depressed in the first place. He loved learning to be a mechanic at TRAX. He worked there the day before he died. If there were more opportunities like that and support available to help people access the stuff they want to do (i.e., the stuff that other people just get to do), I’m not sure LB would have got so down. Oxfordshire County Council (OCC) funded support included a 5 day holiday akin to a boot camp with learning outcomes attached to every waking moment that LB hated, and a peer buddy scheme which failed to attract young people and so LB was buddied by someone our age. Simply not good enough.

Once we reached crisis point, Clause 3 would also have prevented LB’s admittance. There was no crisis care. Just a number to call and be told to go to the out of hours GP. The modus operandi, certainly in Oxon but I suspect pretty much everywhere else, is to rely on families to do the graft and when things have escalated way beyond what most people could endure or ever dream of enduring, it’s off to the ATU. Instead of chucking more direct payments (as meaningless as trying to spend drachma in the local pub) and talk of ‘respite at a building with a snooker table’ at families in crisis, the local authority should make sure a suitably trained, experienced, enthusiastic and caring team are on call and available to work with people and their families to try to avoid the need for admittance.

Slightly ironically (and I still don’t really understand this), the commissioners were apparently happy to indefinitely pay £3500 a week for substandard care at STATT. LB had no desire to live anywhere other than home at that point so Clause 2 was less relevant to us.

Clause 4, which is about securing the most appropriate living arrangement, would also have offered LB some protection against what happened. A review of the new ‘living arrangement’ (which we thought was a short term fix) 3 months from the day it commenced would have happened around June 19th. As it was, nothing was done about getting LB out of the unit other than a meeting eventually organised for July 8th (with the pushing of LB’s head teacher despite OCCs grandiose claims to the contrary).

Clause 5 was also less relevant to LB again because he was still at school and should have been living at home. Like most kids do. This clause is very important to those people who are living independently however. Most people have a choice about where they live. It’s astounding really that we’re trying to change the law to protect people from being moved against their wishes.

One of the things #JusticeforLB has achieved is shining a spotlight on the murkiest of practices that continue in health and social care. I was chatting to someone the other day who said they read our posts with a mix of incredulity and horror. That light shining is embedded within the LBBill, particularly in Clause 6 which places a duty on local authorities and the NHS to report annually on all their living arrangement activities (with full disclosure on the when, why and hows involved), and the Secretary of State to summarise these in an annual report. This is bloody brilliant really and I hope, if the Bill becomes law, there is clear and careful scrutiny of this data at both a local and national level. Using lenses with aspiration, imagination and happiness etched in gold around the frames.

Clause 7 involves sensible rewording of the Mental Capacity Act and Clause 8, again sensibly, removes learning disability/autism from the Mental Health Act. Er, because neither are mental health issues. Clause 9 makes sure that despite Clause 8, people can still access mental health services. [I know].

I also love Clause 10 [I love it all really but some bits are stand out stars for me] which is about being open and transparent with the person whose ‘care’ or support this is about. A chewy bit of ‘nothing about us without us’ which is so blinking obvious. Invite people to meetings about them, give them free support to attend, let them respond in whatever form they choose and communicate the decision from the meetings in an accessible form. Bam. As simple as. And shameful it doesn’t already happen often.

LB was only invited to the last 10 minutes of the Care Plan Approach meeting during his 107 days in the unit. He wasn’t told about the weekly meetings or informed of what was said. Despite all the nonsense about making us get his permission to visit him daily, not one member of staff communicated anything meaningful to him about why he was in there. But that was because they didn’t know why he was there and no one bothered to put the support in place to enable him to come home. A situation that would not be possible (or certainly should not be possible) if the law is changed in the way we are proposing.

The Bill finishes with a bit of welly wielding stating how the Bill will be enacted [Clause 11] because there ain’t no point in changing the law if the law ain’t followed. So that’s it. A more coherent answer to the journalist.

And the short version:

“Yes. LB would probably be lying on the floor right now, playing with his footy guys and chattering away to Chunky Stan.”

Please support the #LBBillLBChunkyStan

Week 10: Tell your MP about #LBBill #107days

The #LBBill is an idea to change the law for disabled people so that they have more control over what happens in their lives. We need your help to achieve that.

So Week 10 of #107days is an action week and we’ve dedicated it to promoting the #LBBill to all the MPs (new and old) now in Westminster. For those of you who aren’t familiar with the #LBBill you can visit the Bill website here and read the full draft Bill here. As with everything #JusticeforLB it has been developed organically and collaboratively, gathering feedback from far and wide including hundreds of disabled people, family members and allies. You can watch a short film (6 mins) about the #LBBill, where it came from and why it’s important here:

We need to contact as many MPs as possible to make them aware of the #LBBill and ask for their support in the Private Member’s Ballot. You can write to your MP via the WriteToThem website (it’ll even tell you who your MP is if you’re not sure); you could also tweet your MP and ask them to pledge their support to the Bill. If you’re unsure of what to say, you could include any of the following:

Please tell your MP that you support the #JusticeforLB campign and that you’re asking them to support a Private Members Bill drafted by the campaign. Please also explain that supporters of the campaign have come together to draft a Bill which would promote and protect disabled people’s right to live in the community with choices equal to others and the support they need. It has become known as ‘LB Bill’ in memory of Connor Sparrowhawk (who was known as LB or Laughing Boy).

Your MP might like to know that the Bill is on its second draft and has had feedback from hundreds of disabled people, family members and allies. The Bill has mass support, as you can see on the campaign website https://lbbill.wordpress.com/supporters. It builds on existing legislation, including the Care Act 2014.

Sign off encouraging your MP to support this Bill and why not ask them to encourage their colleagues to do so. Also encourage them, if they are eligible for and successful in the Private Members Bill ballot, to sponsor the Bill. It would help us if you asked them to reply to let you know whether they support the Bill. It takes two minutes to pledge their support and they can do so here: http://eepurl.com/73mXX

Please add a comment to this post with your MP’s name (and their party and your constituency if you know it) once you’ve contacted them directly, this will help us keep track on how many MPs know about the Bill. If your MP replies and has any specific questions or wishes to discuss the #LBBill then they can email us at LBBillFeedback@gmail.com We look forward to the pledges of support flooding in.

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