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.

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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.

Day 107: Honouring LB #107days

Today we come to the end of #107days of action, exactly a year to the day that LB died, whilst in the ‘care’ of Southern Health, an entirely preventable death.

As accidental campaigners we never really could bring ourselves to plan for today, we’ve discussed it often, but nothing felt appropriate. Yesterday we finally settled on today’s action, in keeping with the rest of this entirely crowdsourced campaign, it’s over to you, our amazing, passionate, creative, committed, dedicated network.

We have two options for you today, you’re welcome to do one of them, or both of them (or none of course, it’s really your choice).

Firstly, please leave a comment on this blog post with your ‘take away’ message from #107days; what one memory, or thought, or learning will stick with you. How has LB, and this campaign in his memory, had an impact on you? We’re hoping for lots of comments and you’ll be able to read them as they grow throughout the day. If you’re a blogger and would like to write a post on your own blog please do add a summary, and a link into the comments here. Please remember that comments are moderated, so if your comment doesn’t appear immediately there’s no need to repost it!

Secondly, please change your social media profile pictures to LB for the day. You’re welcome to change it on twitter, or facebook, or tumblr, or instagram, or any combination of the aforementioned sites (and of course any others). We think this collective action will have quite a visual impact, to maximise that please download our profile pic below (right click on the image will allow you to save it to your computer and you can then upload it to twitter) so everyone is using the same black and white pic.

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For maximum impact we ask you to only use the picture for the day, we very much hope you’ll join us.

More information on what next for the #JusticeforLB campaign will follow in a couple of weeks. You can follow this blog, or follow us on twitter, or facebook. We will seek your input before we make any decisions, but before we ‘move on’, we’d like to honour LB today.

Thank you all, for your support throughout #107days and today especially.

Day 92: Inclusion East and the Missing Sock Bus #107days

Day 92 was adopted by Inclusion East. Here’s what they did, and are doing, for #JusticeforLB and #107days:

The members of Inclusion East are a small,committed bunch of people with complex needs, their families and good friends. In June our monthly Directors meeting was devoted to thinking and talking about Justice for LB.

We were keen to be up to date with what is happening with the campaign. Who is doing and saying what but more importantly

a) What were we doing to add our voices to the outrage, sadness, injustice that led to the very need for LB’s campaign?

All this is very keenly felt as we are families of people who live with autism, epilepsy and complex health and communication needs.

b) What were we doing practically to speak up, challenge ,include people and prevent future disaster?

We took stock and made our list which included:

  • Active Tweeting
  • Mentioning Justice For LB at all meetings, conferences and consultations. Long List!
  • Particularly raising awareness of good epilepsy support at conferences and workshops and yes, on twitter.

Then we adjourned to The Missing Sock which is a funky, Inclusive hostelry in Cambridge. It was there that we plastered The Big Red Party Bus with our home made #JusticeforLB posters.

Deep thoughts and a lot of laughs for Laughing Boy.

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Day 71: WeLDnurses finale #107days

Day 71 was the day of our third and final twitter chat in conjunction with WeLDNurses.

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I’ve waxed lyrical about them before, and am going to repeat myself again, because sometimes we all need to repeat ourselves several times for people to take notice:

I was reflecting on how strong the grass roots/frontline/on the ground response has been to #107days and #JusticeforLB. Amongst the families, carers, dudes, researchers, advocates, activists and academics who have stepped up, along with many more, there is one professional group who (personal view here) have really risen to the challenge of learning from what happened to LB. That’s not to say they’re the only group, and I’m not singling them out as favourites, rather acknowledging that as a professional group, nurses of people with learning disabilities, could have responded with anger, or shame, or disbelief, or avoidance, or many other ways. Instead many learning disability nurses have embraced our campaign and fully supported it.

That was the introduction from Day 43 Death by Indifference, but they also previously adopted Day 15 for Epilepsy Management. Today’s chat was focused on Working together with families, carers and people with a learning disability

As has been the case with each of these chats there was a real energy, frenetic pace in fact. An honest and open discussion between those working in learning disability services, especially learning disability nurses and educators, but also some social workers, some students and of course a large number of parents, carers and JusticeforLB supporters who I can’t neatly label.

You can read a full transcript of the discussion here. Key themes were around listening, really listening, starting with the person, how to handle conflict and an acknowledgment that there really is no such thing as a ‘difficult family’, simply people worn down by an unresponsive system.

The characteristic of these chats has been the contribution, the openness and of course the banter. I for one will miss them, although hopefully many of us will continue to join in with #WeLDNs chats, long after #107days.

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Day 56: Citizen power #107days

Day 56 was adopted by InclusionNorth. This is why they wanted to support #JusticeforLB and #107days:

Inclusion North’s Board of Directors and Advisory Council talked about what happened to LB and what has happened since he died.

They were all really upset for the people who loved & knew LB and wanted Inclusion North to do something that helped other people have their say & get involved as well as show we support the kinds of positive changes that would be Justice for LB.

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Inclusion North decided that they wanted to adopt a day, that coincided with a special self-advocacy meeting, to share real-life examples. These examples will harness practical examples of the changes that need to happen, and share success when people are already getting it right. This is what they have to say about their day today:

We decided Inclusion North should support the campaign by sharing information that shows how it can be different when people with learning disabilities and their families are treated with respect and in control of good support. On 14 May we were already hosting a special meeting for self advocacy leaders to meet with People First England so it felt perfect to do the two things together.

Luckily we could, and we adopted the day from the #107days campaign. We are sharing pictures, stories, videos or even reports that show how we all need to work together to make the changes that are needed. Most of the examples we will share have come from people with Learning Disabilities and family members who got in touch, but if we are honest, the staff team also added in some stuff or twisted the arms of some people for examples we really love! Thank you thank you thank you to everyone who has shared something already & those who do on the day.

At the same time 80 self advocacy leaders and their allies are meeting in York so we will also be sharing updates from that meeting as well. You can see more on Inclusion North’s facebook page.

You can join in with Inclusion North on twitter today and they’ll be using the hashtag #107days. Even better they’ve promised that after the day they’ll collect everything that they get into ‘one big example of what can work if you treat people right’. Looking forward to seeing it.

POSTSCRIPT

19 MAY – Inclusion North have shared with us the write up of the event and learning so far, you can download it by clicking on the first page below:

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Day 53: The golden M (iddle) #107days

Today is a bit of a ‘breath catching, where are we going, what are we doing and how are we doing it?’ kind of day. Lovely Saba Salman provided an independent view of #107days on Day 47. Here we are writing this post from a most definitely not independent view, with a few reflections on what #107days has become and is becoming. To kick off, I dipped back into my blog to see what was happening with LB this time last year. It was the Land of the Golden M day. The trip to the fast food joint that is friend to families with ‘unruly’ kids across the country. He ordered, scoffed and enjoyed. With no sniff that there were only 53 days left in his lifetime. He should have had at least 14,000, even with reduced rates for living in a country in which this label guarantees a default reduction in life length.

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Anyway, let’s not dwell on that right now. Let’s think about the same set of days, 12 months later. Well. It’s astonishing. Remarkable. Moving. Inspiring. And unlike other campaigns. Well we think so anyway.

It really has taken on a life of its own. This may be because neither of us have any experience in ‘running a campaign’ and we started off with the sketchiest of plans. I dug back through the mountain of emails to find out when the idea began and found this from George on March 8th;

Was thinking we need to share something on outcomes on fighting fund blog and was hoping might be able to come up with 107 days of action – inspired by tweet earlier. Just a thought, idea, action, memory, reflection each day? Maybe? 

Eleven days before kick off. With no funding. No plan. No rules or regulation. Just a desire for action, a commitment to improve things and an army of similarly enraged people who clearly wanted to do something. George set up a spreadsheet and we took to social media.

Day 25 featured a recap of activity to that point, since then we’ve had another 29 days of pure brilliance. There have been creative contributions including musical ones in the shape of First Note in Luton recording a song for JusticeforLB and Louise and Anne-Marie dedicating a choral performance of laments to LB, artistic ones in the shape of buses and yesterday’s afternoon tea and mosaic making, and many more postcards of awesome arriving.

There have been extreme physical endeavours to raise awareness and funds, including 15 year old Madi who kayaked 125miles over four days and Jane who is in the middle of running 107ks. These personal feats are accompanied by the fulfilling of LB’s personal ambitions, with three school buses and a Scania truck dedicated to LB, his very own fleet.

A number of brave souls have shared their personal experiences, or their hopes, fears and dreams for the dudes they care about. These have included drops of brilliance, a celebration of big man’s birthday, reflections on when care goes missing, thoughts on a disjointed system and working within it, a question of trust, some thoughts on advocacy in speaking up and speaking out, and a post on ATUs, autism and anxiety. We also continue to make ripples slightly further afield, in France and Canada most recently.

There have also been attempts to raise awareness and knowledge by researchers and academics at conferences and through their teaching. Topics included art history and legal commentary, the Mental Capacity Act, the essentials of care, the role of people with learning disabilities in sociological research, a focus on institutional abuse and people with learning disabilities, and the violence of disablism. These academic offerings, sit alongside a remarkable response from learning disability nurses and student social workers. A day in the life of… provided useful food for thought on nursing notes and language, the second WeLDNurses chat was held focusing on preventable deaths, and one student social worker decided to be the catalyst for tenants in her placement setting to develop one-page profiles.

The campaign has been such a success purely because of the contributions and commitment people have made. Such diversity and a randomness that is refreshing, not least because it perfectly captures LB’s quirkiness and irreverent approach to life. We are still only half way with much more to come, including more focus on advocacy and activism; a number of conferences, workshops and seminars; more quilting, a comedy night and the release of 107 red balloons. There will be many more blog posts, videos, animation and music produced and celebrated, including a campaign flag at Glastonbury. There are also a number of days adopted for fundraising activity including 107 London buses in a day, George is shaving her head (we don’t do things by half), and the party night to end all party nights.

There is real momentum and determination for change which (hopefully) can’t be downtrodden and chucked into the inertia bucket.

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So is it all worth it? We think so. So far we’ve achieved a number of the aims set out in the Connor Manifesto:

  • a Serious Case Review into LB’s death is about to begin and will examine how such poor provision could be commissioned
  • an independent investigation is currently being arranged into all the unexpected deaths in Southern Health’s mental health and learning disability services dating back to 2011
  • one of the remaining #107days days will involve a meeting with our MP, Andrew Smith, and Deborah Coles, CEO of INQUEST to discuss the issue of independent investigations into every death that happens in a secure (loosely defined) setting.

Anyone who would like to dismiss us as using this case inappropriately, can feel free to do so, but we are proud of what has been achieved so far, and committed to the long haul. For too long people have lamented the state of provision for people with learning disabilities, much hand wringing and head scratching appears to have led to a systemic apathy and not much else, with the Winterbourne View JIP recently described as an abject failure by the Minister. Maybe it’s time for the suits in the system to take a long look in the mirror and ask what their own behaviour is affirming in this malignant system. We don’t need more concordats, we don’t need more of those responsible sitting around meeting tables and repeatedly asking people to share their good practice.

We need people to stop and listen to what people are really saying. To leave their prejudices and fears and professional cloaks at the door, and take the time to hear what people are saying, and join them in their journey to improve things. While they’re busy attending meetings and seeking examples, we’re busy making change. We have 54 days to go and most have been adopted, but we can double up on days. We have a number of actions concluding at the end of #107days, and still many ways in which people can get involved.

We want to finish by reiterating Saba’s call to those in authority:

People need to put their collective muscles where their mouths are. Doing that sometime during the remaining 60 days of the campaign for Connor seems like the right thing to do.

There is always room on the #107days bus, and everyone is welcome.

Day 47: Indignation and initiative vs ‘institutional inertia’ #107days

We are now on Day 47 of #107days, rapidly approaching our half way point, and we are delighted to share with you a post written by Saba Salman, who adopted today. Saba wrote the initial piece on LB’s death and #JusticeforLB, published in the Guardian on Day 0. It has been phenomenally heartening to see an independent person’s take on our campaign, but we’ll leave you to judge that for yourselves:

Imagine if you had £3,500 a week to run a campaign, consider the awareness you could raise with even a tenth of that.

Now multiply £3,500 – the average weekly cost of a place at an assessment and treatment unit (ATU) – by 3,250 – the number of learning disabled people in such units. That’s an indicator of the costs involved in using controversial Winterbourne View-style settings.

Just over a year ago, 18-year-old Connor Sparrowhawk, aka Laughing Boy or LB, was admitted to a Southern Health NHS Trust ATU where he died an avoidable death 107 days later.

In contrast to the vast amounts spent by commissioners on places like the one where LB died, the #JusticeforLB campaign sparked by his death is ‘funded’ solely by goodwill. No PR team crafting on-message missives, no policy wonks collating information, no consultants advising on publicity.

#107days of action began on Wednesday 19 March, a year to the day Connor went into Slade House, and continues until the first anniversary of his death, Friday 4 July 2014. Half the aim – and I’ll come to the other half at the end of this post – is to “inspire, collate and share positive actions being taken to support #JusticeforLB and all young dudes”. The goal is to capture the “energy, support and outrage” ignited by LB’s death.

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This post, around halfway through #107days and written from the perspective of having reported on #JusticeforLB at the start of the campaign, looks at what’s been achieved so far.

I’m not describing the “abject failure” of progress to rid social care of Winterbourne-style settings – care minister Norman Lamb’s words – the sort of apologies for care where compassion is often as absent as any actual assessment or treatment. Nor do I write about the errors at Southern (you can read here about the enforcement action from health regulators after a string of failures). I want to explain, from my interested observer’s standpoint, the impact of #107days and what might set it apart from other awareness drives.

It’s a timely moment to do this. It is now three years since Winterbourne, less than a week after Panorama yet again highlighted abuse and neglect in care homes and a few days since new information on the use of restraint and medication for people in units like LB’s. The campaign reflects not only the importance of #JusticeforLB, but also an unmet need to finally change attitudes towards vulnerable people (and it’s not as if we don’t know what “good care” looks like).

There is a palpable sense that the #107days campaign is different. Talking to journalists, families, activists, academics, bloggers and social care providers, the word “campaign” doesn’t adequately define #107days. It’s an, organic, evolving movement for change, a collaborative wave of effort involving a remarkably diverse range of folk including families, carers, people with learning disabilities, advocates, academics and learning disability nurses.

It’s worth noting the campaign’s global reach. LB’s bus postcard has been pictured all over the UK and as far away as Canada, America, Ireland, France, Majorca and São Paulo. LB has touched a bus driver in Vancouver and brownies in New Zealand.

Because of the blog run by Connor’s mother Sara Ryan (launched long before his death), LB and his family are not mere statistics in a report or anonymised case study “victims” in yet another care scandal. Instead we have Connor: a son, brother, nephew, friend, schoolmate, neighbour – and much more – deprived of his potential. We forget neither his face and personality nor the honest grief of a family facing “a black hole of unspeakable and immeasurable and incomprehensible pain”.

Yet while anger and angst has sparked and continues to fan #107days, the overwhelming atmosphere is optimistic. There is the sense that outrage, can should and will force action (and it’s worth mentioning, as #JusticeforLB supporters have stressed, exposing bad care begs a focus on good care – lest we forget and tar all professional carers with the same apathetic brush).

Both in its irreverent attitude and wide-ranging activity, this is no orthodox campaign. It is human and accessible because of its eclectic and inclusive nature (see, for example, Change People’s easy read version of the report into Connor’s death). And at the heart of the campaign lie concrete demands. In its bottom-up, social media-driven, grassroots approach and dogged determination, #107days has a hint of the Spartacus campaign against welfare cuts (Spartacus activist Bendy Girl is supporting #JusticeforLB through her work with the newly formed People First England).

As for impact so far, daily blogposts have attracted over 25,000 hits with visitors from 63 countries. There have been 7,000 or so tweets (which pre-date #107days) 1,380 followers, the #justiceforLB hashtag has been used more than 3,560 times and the #107days hashtag more than 2,000 times in the last month (thanks to George Julian for the number crunching). So far, the total amount raised for Connor’s family’s legal bills is around £10,000.

I can’t list each #107day but suffice it to say that the exhaustive activities and analysis so far include creative and sporting achievements highlighting the campaign as well as education-based events (or as Sara described progress on only Day 6 of #107: “Tiny, big, colourful, grey, staid, chunky, smooth, uncomfortable, funny, powerful, mundane, everyday, extraordinary, awkward, shocking, fun, definitely not fun, political, politically incorrect, simple, random, harrowing, personal, in your face, committed, joyful, loud, almost forgettable, colourful and whatever events”).

Along with blogs, beach art and buses in Connor’s name, there’s an LB truck, the tale of two villages’ awareness-raising, a hair-raising homage, autobiographical posts about autism, siblings’ stories, sporting activities, and lectures. And patchwork, postcards, pencil cases, paddling (by a 15-year-old rower) and petition-style letters (open to signatures).

It’s worth noting that while learning disability should be but isn’t a mainstream media issue, there have been pieces in the Guardian and Daily Telegraph plus important coverage on Radio 4 , BBC Oxford and in the specialist pressBBC Radio Oxford‘s Phil Gayle and team have followed developments relentlessly and Sting Radio produced an uplifting show on the first day of the campaign. While some of this coverage pre-dates #107days, it reflects how media attention has been captured solely thanks to the efforts of Connor’s family and supporters (links to other coverage are on Sara’s blog).

As for reaching the key figures who could help make the changes #107days wants, the campaign has had contact with health secretary Jeremy Hunt, care minister Norman Lamb, chief inspector of adult social care Andrea Sutcliffe and Winterbourne improvement programme director Bill Mumford, care provider organisations and staff.

Earlier, I described the first half of #107days’ aims to “inspire, collate and share positive actions” and capture the “energy, support and outrage” ignited by LB’s death. Based on the efforts and impact so far, and the campaign is clearly on track.

But the remaining target – to “ensure that lasting changes and improvements are made” – is more elusive, largely because it lies outside the responsibility and remit of members of the #107days campaign.

Contrast the collective nerve, verve, indignation and initiative of the last 46 days to what Norman Lamb calls the historic “institutional inertia” of NHS and local government commissioners, a cultural apathy undermining plans to move more people out of Winterbourne-style units.

The existence and continued use of ATUs might be a challenging and seemingly intractable problem. But that’s not good enough a reason for commissioners – and those who run and govern such places – to ignore the problem. There are good intentions coming from some in authority; people just need to put their collective muscles where their mouths are. Doing that sometime during the remaining 60 days of the campaign for Connor seems like the right thing to do.

Day 43: Death by indifference #WeLDNs #107days

Today was adopted by @WeLDNurses for the second of three web-chats as part of #107days campaign. The first one took place on Day 15 and focused on epilepsy management; it was fast paced and brilliant, personal learning points are make a brew before the start and don’t worry too much about trying to keep up! Just jump in, as and when you can. The chat was facilitated by Sam and there is a transcript of the chat here.

Today’s chat takes place at 8:30pm and is focusing on death by indifference. If you visit the chat page you can read more about the background, and there’s also a link to a WeNurses guide in case you’ve never joined in a webchat before. There’s a great introduction by tonight’s facilitator, Sally, and I’ve cherry picked some of it for this post:

In the wake of Winterbourne View, South Staffs and the delivery of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) the question on the lips of Team @WeLDNurses is: How Many More Times Do We Have To Do This Chat?

If people with learning disabilities are dying avoidably in specialist services, do we need to start there in terms of improving safety and identifying early warning signs and how we respond to them?

I have no doubt that the vast majority of health professionals want to do their best for the people in their care, but there have been too many recent failures to ignore. We have to take action. Now.

Our chat on Thursday will be discussing ways in which we can all take action, as individual practitioners, through organisations to primary care, to commissioners and secondary care leads and of course third sector providers.

We hope you can join us to share your views and experiences, and to discuss how we can all take action to avoid preventable deaths of people with learning disabilities.

WeLDNurses

Yesterday, Day 42, was adopted by Phil, a Registered Nurse for People with Learning Disabilities, and you can read his post here if you missed it. I’m going to take the liberty of repeating myself and the intro here:

As I sat drafting this post this morning I was reflecting on how strong the grass roots/frontline/on the ground response has been to #107days and #JusticeforLB. Amongst the families, carers, dudes, researchers, advocates, activists and academics who have stepped up, along with many more, there is one professional group who (personal view here) have really risen to the challenge of learning from what happened to LB. That’s not to say they’re the only group, and I’m not singling them out as favourites, rather acknowledging that as a professional group, nurses of people with learning disabilities, could have responded with anger, or shame, or disbelief, or avoidance, or many other ways. Instead many learning disability nurses have embraced our campaign and fully supported it.

On a day where poor care of people will yet again be exposed by Panorama, I wanted to just acknowledge how heartening it is to know that people working in these roles do care. That doesn’t take away from the abuse or neglect demonstrated by a few, at the frontline (and personal view again here) or at CEO level, but it is worth remembering the many, many people who are providing good care and seeking to learn from LB’s death. 

Please join us, and @WeLDNurses, professionals who are taking responsibility and seeking to improve things, tonight for our chat. Thank you #WeLDNs #JusticeforLB 8:30pm.

Day 19: ATUs – a tweet a day #107days

Day 19 features Sam who has very generously agreed to share her learning across #107days. She is doing this through a tweet a day, and so far it’s been fascinating what she has managed to share in just 140 characters a day. As with all contributors to #107days we asked Sam why #JusticeforLB mattered to her and this is what she said:

I and Doreen Kelly set up Beyond Limits nearly three years ago in conjunction with the then Plymouth PCT (now NEW Devon CCG) to set up what I now come to realise was an inspiration project to plan with the 20 people with learning disabilities and their families who had been cruelly placed in Assessment and Treatment Units across the UK, to bring them home where they wanted to be. Inspirational because the commissioners were taking a leap of faith, admitting they had got things wrong and would work in real partnership with us as a Provider, and families and people, for probably one of the first times.

This was not the first experience I have had of working with Assessment and Treatment Units having worked for the previous five years as part of the Change Team brought in to close Budock Hospital in Cornwall and transform their services and then managing for Bournemouth & Poole PCT the closure of their NHS Units. These experiences set a fire in my soul to help people get out and get a life, but the process has been long, hard and frustrating with fighting all the way against the blocks, crap systems and sheer discrimination that exist in the very services that are meant to be helping these people.

We have worked hard to set up tailor made services for people and they are now getting lives and what is more important lives that involve their families again. Every small achievement and smile that I see on a person or family member’s face makes it all worth it. A knock on effect is that we also see that the teams that support people in the personalised way we work also get great rewards from the close relationships they develop with people and they grow in confidence about what can be achieved meaning we are growing a small army of freedom fighters down here in the South West!

However, it was with a heavy heart and yet more tears that I came across Sara’s tweets and blogs in November of last year to be reminded of the scale of the problem and the devastating outcomes that will occur for as long as Assessment and Treatment Units still exist. The death of a loved one must be excruciating in any circumstance, but the needless and wasted life of Connor Sparrowhawk is a national disgrace and I could not but get involved in the campaign. The passion with which Sara has driven the campaign reminded me so much of all the families we work with whose resilience, against all the odds, has been the major contributor to getting people home. My small contribution to the campaign has been to tweet everyday on the things I have learned from the work I have done over the last eight years with Assessment and Treatment Units.

Beyond Limits is a small Organisation and that is how we will stay because to us small is beautiful and small means we can be there for each and every person we support, but the challenge is how to help others to do the same across the UK so when we get heartbreaking calls from families elsewhere we can confidently sign post to other organisations that share our values and will make things happen.

Finally, and just as important and crucial to a new culture that I hope is developing, is stopping the tap that drips people into these units. If the tap is turned off by commissioners Assessment and Treatment Units will not survive. Cultural change will then happen and as long as people think creatively and do not set up local Institutions instead. We then have a fighting chance to stop what happened to Connor ever happening again.

Day 4: 107 lessons from dudes and dudettes #107days

One of the most encouraging things that has already happened as a result of #JusticeforLB is the number of new online voices. We know of at least three new blogs and many more twitter accounts that have been established to join the conversation around #JusticeforLB and some specifically as a result of #107days. For anyone who doesn’t blog I think its fair to say that for some it is a rather hard hurdle to jump initially. Who is going to read it? What if people don’t like it? Why would anyone care about what I have to say? Well let me reassure you if you’re considering it, every voice is valuable and the internet is a truly brilliant way to connect with others, who are genuinely interested in your experience and views, and if they aren’t they’ll not hang around, but that’s ok too. Not saying anything means you play it safe, but your voice isn’t heard. A real loss, everyone has something worth saying.

Some of these new online voices are sharing, quite brilliantly already, experiences and wisdom gleaned from many years working with, living with or sharing lives with dudes and dudettes. One of these new voices is Wise Grannie, you can connect with her on twitter @WiseGrannie or read her blog http://WiseGrannie.wordpress.com.

WiseGrannie

WiseGrannie describes herself as:

Possibly made every mistake in the book as teacher, mother, daughter, wife, trainer, friend, carer and colleague, but I did try to be kind.

and gives her reason for blogging as:

Hoping to help Justice for LB by blogging the good, funny and surprising things I learnt from all the young Dudes and Dudettes I foolishly imagined I was teaching (long ago when the world was young).

WiseGrannie has committed to blogging a story a day and so far she has had us roaring with laughter and sniffling back a few tears, they are definitely worth a read. Start here for her first post that provides context: To begin at the beginning. Can’t wait to see what more she has to share.