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.

Advertisements

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.

Screenshot 2014-04-23 05.56.04

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 2: Inquest inequalities #107days

If someone dies unexpectedly in detention (in prison, immigration services, police custody or under mental health sectioning) there is a legal requirement that the coroner must hold an inquest. An inquest is a public investigation to establish who the person was, and where, when and how they died. If someone dies in the care of the state, then article 2 of the European Convention on Human rights (the right to life) is evoked, and the coroner may decided to hold an article 2 inquest. This is more thorough and far reaching than inquests into deaths that do not engage this duty.

For further info, INQUEST have thorough info and excellent caseworkers to provide advice.

This all seems fairly straightforward but in practice is a lot murkier and difficult for families to negotiate. Here are some of the issues that we’ve learned over the past year or so.

1. The NHS can use public funding to pay for legal representation at inquests

Astonishingly, NHS trusts are able to fund expert legal teams while families can only rarely access exceptional funding to cover their costs. The criteria for exceptional funding is enormously complicated and confusing. The cost of legal representation is not only for attendance at the inquest (and pre-inquest review meetings) but involves a large amount of preparatory work. Our solicitor has read through extensive documentation and records, identified issues to be brought to the attention of the coroner, written submissions, created a witness list and repeatedly requested missing documentation from Southern Health. So far, this has cost around £14,000.

Last month a High Court ruling in a case brought by Joanna Letts (who was trying to establish whether her brother’s death was related to hospital failings) says official guidance on whether to provide legal aid has been ‘misleading and inaccurate’.

2. Inquests are supposed to be inquisitorial and not adversarial

In practice, NHS trusts may be very keen to narrow the focus of inquests to reduce potential damage to reputation and avoid negative findings by the coroner. Sloven had an expert barrister in representing the police and medical defence organisations at the first pre-inquest review meeting. He argued that an article 2 inquest was not necessary because the article 2 procedural obligations were met by the various ongoing investigations relating to LB’s death. He also argued the conditions for having a jury were not met because drowning was not an ‘unnatural’ death. The Minister of State for Justice and Civil Liberties, Simon Hughes, argues that families do not need legal representation at inquests. The coroner should make the process understandable. This is clearly nonsensical given the legal arguments banging back and forth between the Sloven legal team and ours.

3. Witness coaching

Witness coaching is clearly common at inquests. Rosi Reed documented the obvious coaching Sloven employees had undergone at Nico’s recent inquest. There have also been repeated questions about the behaviour of staff at Joshua Titcombe’s inquest, and the common view is that staff were clearly coached. Indeed, Dr Bill Kirkup in his investigation into what happened at Morecambe Bay had this to say:

We also found evidence of inappropriate distortion of the process of preparation for an inquest, with circulation of what we could only describe as ‘model answers’. Central to this was the conflict of roles of one individual who inappropriately combined the functions of senior midwife, maternity risk manager, supervisor of midwives and staff representative. We make no criticism of staff for individual errors, which, for the most part, happen despite their best efforts and are found in all healthcare systems. Where individuals collude in concealing the truth of what has happened, however, their behaviour is inexcusable, as well as unprofessional.

Kirkup’s report had 44 recommendations for improvements, number 30 is as follows:

30. A national protocol should be drawn up setting out the duties of all Trusts and their staff in relation to inquests. This should include, but not be limited to, the avoidance of attempts to ‘fend off’ inquests, a mandatory requirement not to coach staff or provide ‘model answers’, the need to avoid collusion between staff on lines to take, and the inappropriateness of relying on coronial processes or expert opinions provided to coroners to substitute for incident investigation. Action: NHS England, the Care Quality Commission.

It is explicitly clear that if a family hopes to establish what actually happened to their loved one then a legal team with expertise in getting beyond learned statements is necessary.

Yesterday the Public Administration Select Committee of the House of Commons published a report Investigating clinical incidents in the NHS. You can read the JusticeforLB response to it here, while we welcome it’s recommendations, we do not think they go far enough.

It is crystal clear that more reform is needed of the inquest system in the UK. The system is archaic and there is no parity of arms.

What a difference a year makes? #JusticeforLB

It’s now 74 days since the spectacular finale of the #107days campaign, 439 days since LB died, preventably in STATT.

Progress towards #JusticeforLB continues at a pace, in the last week alone we’ve unveiled the beautiful LB Justice Quilt, and yesterday we launched the LB Bill website. All this in addition to the other actions documented in our earlier post about maintaining momentum. Quite a lot of action for an entirely volunteer campaign figured headed by a family in the worst situation imaginable. So yesterday Sara and I were talking about how much has been achieved since the end of the #107days, in those 74 days.

Contrast that progress with the progress made in STATT in the 74 days that immediately followed LB’s death. Over to Sara:

Apologies for the somewhat ironic title for this post. A year ago this week, the CQC went into the Slade House site (which included the STATT unit) and did an inspection that (at last) made visible the level of disfunction/malaise/failure that characterised provision there.

A marker of how bad it was, LB’s death hadn’t sparked any apparent consideration around whether or not there might be issues around the quality of care provided. Nothing, in 74 days after the worse outcome of ‘care’ imaginable, no action, no change, no improvement.

The CQC inspection team pitched up for a routine inspection and did their job.

The full horror of what the team found can be read here. It’s a deeply sad, harrowing, unbelievable and enraging read. And was followed by similar failures at other provision in Oxfordshire.

Here in the justice shed we try to remain positive and optimistic so, in the spirit of 107 days of action, we raise a cuppa to the CQC and effective inspection of health and social care provision.
image

It is impossible to know, but our suspicion is that without CQC conducting routine inspections, issuing enforcement action and continuing to monitor the ‘progress’ at Southern Health, it is a very real possibility that STATT could still be open. The inevitable outcome of that is too much to imagine.

We have a long old road to get #JusticeforLB, but there are inklings that in small ways we may already be improving things for other dudes. So, as ever, thanks for all your support. Huge thanks also to CQC, for doing their job, but doing it with care, compassion and attention to detail, something the evidence suggest were rare commodities around STATT.

Making LB’s Justice Quilt #JusticeforLB

We’ve a guest post today from Janet Read to coincide with the launching of the amazing quilt that emerged from #107days.

I’ve just seen a photograph on Twitter of George Julian taking LB’s Justice Quilt to the Lancaster conference where it will see the light of day in public for the very first time. If you were travelling north by train today and saw someone carrying a very large multi-coloured sausage, it was probably George.

Quilt_train

This reminded me that I’d better get a move-on with the post I promised Sara I’d write about the making of the quilt. I started it the other day but I was feeling a bit inhibited and it all turned out rather stodgy and boring. And the quilt (and the process of making it) is about as far from stodgy and boring as it’s possible to get.

The inhibition came from feeling that it’s hard to write honestly about something I’d had a hand in making, without fretting about looking as if I’m blowing my own trumpet. The thing is, there’s no getting away from the fact that I think the quilt is bloody marvelous and so do the other makers, Janis Firminger, Margaret Taylor and Jean Draper. It ‘s everything we hoped it would be and much, much more besides. It’s given us immense joy every time we’ve worked on it, looked at it and talked about it. We’ve been incredibly moved by it, too. But of course, the whole point is that it wasn’t really down to us at all. The main reason for its magic is that a whole bunch of you people who care about what happened to Connor and who want to change things for other dudes, rose to the occasion and set to. We said that we wanted to make something that reflected the campaign and its mood and energy. Well, you outsider artists sure didn’t need telling twice! The pieces that you sent us to work with were more arresting, inventive, moving, angry, irreverent, colourful, thoughtful, beautiful, affectionate and informed than anything we could have hoped for. They came embroidered, appliqued, crayoned, painted, felt-tipped, crocheted and knitted. They sometimes arrived with apologetic notes saying you hoped they were good enough. Good enough? Yes! Yes! Yes! More than! Every single one!

At the beginning, only Janis, Margaret and I were involved. We consulted Sara and George, did the post, asked people to take part and waited. Would anyone respond and if so, how many? We had no idea. We told ourselves that small could be beautiful but to be honest, ‘LB’s Justice Tea towel’ might have felt a bit of an anti-climax. On the other hand, where would Sara keep something the size of a football pitch? Then the contributions started coming in thick and fast– the patches and the gifts of thread and fabrics. I got the best job of opening the post and keeping tabs on what we’d had. It was so exciting. Apart from the individual contributions, we had the workshop at Cardiff Law School which Lucy Series wrote about on 107 days and the Messy Church in Kent organized by Beckie Whelton, also recorded on 107 days. I didn’t know what Messy Church was but I do now. I can tell you it sounds a whole lot more fun than the Sunday School I went to!

Shortly into the project, Janis, Marg and I found ourselves needing some help. Confession time now: we three are stitchers but we’d never made a quilt before in our lives! Sorry. I can almost hear a sharp intake of breath from all the proper quilters out there because they know better than most that The Great British Bake Off doesn’t have the monopoly on THE TECHNICAL CHALLENGE. So, we asked for a leg up from my big sister Jean whose day job is art textiles and who knows a thing or two about quilting and all sorts of other stuff involving fabric and thread. She loved the idea of the project and was busy stitching patches. After being bombarded daily with beginners’ quilting questions, she offered to join in.

One of the best times (and there were many good ones) was the very first time that we laid out all the patches in the same place. When we stood in front of this vivid mass covering my dining room floor, it took our breath away. We knew quite simply that we had something very special to work with.

And that’s about the top and bottom of it really. The end of May was close of play for contributions but of course, they came in for a while after that. What else would we have expected from a load of stitching rule-breakers? The patches came in all shapes and sizes, too, and were probably the better for it -though I did threaten at one stage, to stitch a patch that said’ Social justice activists can’t measure 4X6 inches’. When all the patches were in, we put the rather complicated jigsaw together ,and spent the summer machining, quilting and hand-stitching The People’s Art Work , as we sometimes called it. The final stitch went in a week ago.

JusticeQuiltfull

I don’t know how many patches there are because every time I started counting, I was distracted by something that I’d not looked at properly before. Living with the quilt has been a pleasure, and running our hands and eyes over your lovely work for the past three months has been an unforgettable experience. We’ve handled it nearly every day and that means that scarcely a day has gone by without our thoughts turning to Connor, his family and the other dudes. We’ve talked about them a lot too. We hope that the quilt will have the same effect on other people when they stand in front of it. Someone asked me last week when we were doing another one and the reply was that we’re not. LB’s Justice Quilt is a one-off for Connor, the dudes, Sara and her family.

Our heartfelt thanks, then, to all you patch-makers, protest stitchers and outsider artists. It ‘s truly brilliant that you created so many strong and beautiful fragments of resistance in response to something so terrible. What gifts you gave!

We couldn’t publish this post without acknowledging ourselves the absolutely phenomenal beauty of the Justice Quilt. There is so much love stitched into the quilt, which somehow perfectly captures the crowdsourced magic of the #107days campaign. The quilt would have certainly been a pile of patches if it wasn’t for the extreme dedication of Janet, Janis, Margaret and Jean, and we will be forever grateful to them for their work.

The quilt is officially being ‘launched’ at the #CEDR14 conference today (10 September 2014) and we will be looking for a number of venues to host the quilt over the next year. Given how delicate it is we don’t want it travelling every week so we’ll be looking for venues that can display the quilt, while also protecting it. If you have contacts in venues, organisations, galleries etc then feel free to leave a comment, drop us a tweet @JusticeforLB or send us an email with your suggestion and we’ll collect them in and make a touring plan. We are really keen that as many people get to see the quilt as possible, so we’ll keep you all posted on these plans.

Thank you to all our patchers, your contribution to bringing JusticeforLB and all young dudes is stitched into the fabric of this campaign.

Day 68: Get a move on #107days

Day 68 was adopted by Beckie, who has been supporting the #107days campaign since the beginning, instigating the bus drawing and supporting our efforts in many ways. Having been knocked back by her local school, undeterred and determined to bring the message of #JusticeforLB to the next generation she adopted a day to use at her local Messy Church service. Here’s what she had to say:

In 1970, Jim Mansell fought to close Ely hospital. When asked later if he might lack the credentials and experience for this reform he said ‘(that) was actually a question that never occurred to me’. Jim (at 18 years old) was not much older than Connor was when he died.

Although the old style institutions have now gone, there are institutions in disguise dotted around every area of the UK. From what I can see, Assessment and Treatment Units (which don’t always do what it says on the tin) can be wolves in sheep’s clothing. All too often, they neither assess nor treat people. People with learning disabilities are not ill. They don’t need to be in hospital. The rest of the world has moved on since 1970 and we should have many more good options for supporting people in their homes and local areas, even when people are experiencing periods of distress and need some additional support.

Day68_1970

When I heard what had happened to Connor and the way that Sara and her family have been treated, I wanted to get involved in this campaign. I was (still am) so angry on their behalf. Today will be spent making patches with family and friends for the Justice for LB quilt. To kick start this off, I asked Kerry and Kat if we could get the children involved at Messy Church. So on Sunday the children of Messy Church spent time making patches for Connor, and Kerry and Kat talked about Connor during the service that followed. Everyone left with a flyer and the knowledge of how to donate to the fighting fund.

This is what Kerry and Kat had to say about why they wanted to get involved: ‘At Messy Church we were made aware of the campaign by one of our Messy Church parents Beckie. We wanted to raise awareness about what happened to Connor and ensure that children and young people, especially those with disabilities and special needs, receive the care they need and deserve. We hope that by getting involved we can not only raise awareness regarding young people with autism and other learning difficulties but also keep the care of the most vulnerable in our society in our thoughts and prayers’.

Day68patches

We have to make this campaign count. It’s time for change. For those behind this campaign, like the young Jim Mansell fighting to close Ely over 40 years ago, it didn’t occur to us not to act. Change is the only option. If not now, when? How many more scandals and deaths do there have to be before we as a society sit up and listen.

The long overdue closure of assessment and treatment units is just the beginning. As a research assistant I have observed some amazing support. But this is the exception rather than the norm. ‘Care’ is not enough. Good quality support should be about enabling people to live an engaged and fulfilling life.

This campaign is for Connor. It’s for all the other dudes and dudettes too. All those in those mini institutions dotted around the country. It’s for the dude with severe and profound disabilities placed in a ‘sensory room’ and left to stare at the walls for 45 minutes, because the staff forgot to turn anything on. It’s for the dude whose only pleasure (watching The Simpsons) was denied to him because the staff decided to dish up dinner just as it started. It’s for the dudes who all said they wanted to go to Spain on holiday and the manager booked to go to Corfu because (and I’m quoting here) ‘They won’t know the difference’.  It’s for all the dudes and dudettes living at Orchard Hill, for when the scandal broke, it was bumped off the news because a Posh Spice got a new haircut. I kid you not, a haircut more important than a person. I have never forgotten you, any of you. It’s time to show that the rest of society has not forgotten you too. It is everyone’s responsibility to act. Enough is enough. The time to act is now. It is unthinkable not to.

One of the joys of managing the #107days blog is getting to pick what each day’s post is called. Today I struggled, there were so many options, it could have related to mess or messy (given the context of the day), it could have been enough is enough (no-one could argue with that), but in the end I went with Get a move on for the double connotations associated with that, Southern Health suggesting in a media interview they’d help Sara to move on, Beckie’s patch above – one of my favourite’s so far, and of course what Beckie’s post fronts up, our seeming inability as a society to really move on in how we support and treat and view people with a learning disability. I toyed with Moving on but we’ve apparently been doing that since Jim’s day. Far too slowly.