Day 83: H&SA and BILD respond #107days

A number of the remaining #107days are shared days, and today is a powerful duo of H&SA and BILD. Alicia, from the Housing and Support Alliance (H&SA) and Ann, from British Institute of Learning Disability (BILD) both got in touch to adopt a day with a real urge to do something to make progress. We are delighted at the actions they have taken and feel confident that they will support real progress towards #JusticeforLB and all dudes.

So, first of all why did they want to get involved with supporting #107days and #JusticeforLB? Alicia, from Housing & Support Alliance had this to say:

H&SA is supporting #JusticeforLB firstly because Connor and his family only wanted something simple and straightforward, to get the help they needed and had a right to in difficult times, and it ended in the most unimaginable tragedy. We know that people with learning disabilities that have the most complicated needs can and do get good help, a good place to live and the support they need to live there. It is doable and affordable yet all over the country there are still many people with learning disabilities and families getting poor and mediocre support, being sent away from the people they love because there is no decent support locally and being needlessly hospitalised when all they need is for professionals to listen and respond. It is an outrage.

and Ann from BILD:

Like so many, we at BILD, the British Institute of Learning Disabilities, were dismayed to hear of the death of Connor Sparrowhawk, yet another young person dying whilst in ‘care’.

We were then shocked, again like many others, when the independent report made it clear that his death would likely not have happened had the right kind of support been in place in the unit where has was staying. We can only imagine the distress of his family and friends knowing that his death was preventable.

So many people with learning disabilities and autism have suffered from the lack of the kind of support they have every right to expect and should have. Too often organisations who are there to provide care and support fail to do so. It is people with learning disabilities and autism, and their families, who pay the greatest price.

Then we saw that the organisers of #107days wanted to harness the outrage that emerged in response to Connor’s death to fuel a campaign aimed at ensuring lasting changes and improvements are made. We wanted to join in.

As you can see they both wanted to help make real change. Alicia and her team are doing this:

To support the #107 days campaign H&SA are going to do something practical to help get people with learning disabilities out of institutions. In the latest Winterbourne View Concordat data it says that are 2358 patients living in ATUs that do not have a transfer date.  There are various reasons given for why most of those people do not have a transfer date. For 165 people it says that the reason they are still there is that there is not suitable housing provision locally.

H&SAs commitment to #107days is to try and find out what the local issues are and offer help to get housing for each of those people. We will do this by:

• Contacting each of the 14 commissioners who have responsibility for moving people on
• Finding out what the local issues are
• Offering support, information and contacts to help all of those people get housing.
• We will publish the responses from commissioners on the #107days site (later today) on the 10th June 2014

Also happening today is BILD’s action and you can follow it and participate on twitter using #BILDepilepsy.

To show our support we decided to organise a free event on 10 June, called, ‘Epilepsy – what matters?’, aimed at front line staff, families and anyone interested in epilepsy and people with learning disabilities and or autism. As well as the sessions taking place in Birmingham, we will also use the web, social media, and BILD’s many members, to help raise awareness of the issues around epilepsy support for young people with learning disabilities and or autism.

We are delighted to say that the event is full and there was a waiting list.

The topics the event will cover are:

• Epilepsy misdiagnosis
• Epilepsy and behaviour
• Describing seizures
• Epilepsy – Isn’t that just seizures?
• Impact of epilepsy on learning and behaviour
• The link between epilepsy and autism

We are very grateful to Pam Morris, Nurse consultant, and Emma Tingley, the National Services Programme Manager for Young Epilepsy, for being our speakers, and to Janet Cobb for helping to organise and promote the event.

Beyond 10 June, we will capture the available information on epilepsy in young people with learning disabilities and or autism and make sure this is available on the BILD website for visitors and those looking for support.

We would like to wish the #107 Days Campaign every success.

You can check out the programme for today below, and join in on twitter. We’d like to thank the Housing & Support Alliance and the British Institute of Learning Disabilities for their actions.

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.

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 15: Focusing on the person #107days

Day 15 was shared two ways, between Jenna of the Foundation for People with Learning Disabilities (looking back to a presentation she gave yesterday) and the team at We Learning Disability Nurses (looking forward to our first joint twitter chat this evening).

When I asked Jenna why she wanted to support #107days and #JusticeforLB this is what she had to say:

For nearly a year I have been following a blog called my daft life. Something about the funny and touching way this blog has been written has kept my attention. I have laughed and more recently cried at the stories of Laughing Boy. I can’t see an Eddie Stobbart lorry now without thinking of him.

When I started following the blog it was written from the perspective of a parent whose son was in an assessment treatment unit. It struck a cord and made me think and reflect on a pilot I am working on.  The Foundation For People With Learning Disabilities have been commissioned by Kernow Clinical Commissioning Group to work with people who are out of county in assessment treatment units to develop person centred plans.

Jenna, and colleagues at the Foundation for People with Learning Disabilities, saw many parallels between LB’s experience, and that of his family, and many others they are working with:

What clearly impacted on the standard care he received was the failure of the unit to engage those people who knew him best in the care planning and risk assessing processes in place. Much of what was reported echoes the experiences of some of the amazing individuals and their families who I’ve had the privilege to work with over the years. The report states that the investigation found no evidence that the 18 years’ worth of knowledge and expertise that LB’s family had was captured or included in his risk assessment or care plan. We know that the Department of Health’s 2012 report into the Winterbourne View drew similar conclusions about the involvement of people’s families.

They also took the time to read the independent report into LB’s death and picked up on the way in which Sloven Health engaged with person centred planning:

The investigation states that there was no evidence that any person centred planning took place until LB’s family organised a meeting. “We saw no evidence that person-centred planning took place until CS’ formal CPA was carried out” What is also noted is the discomfort felt by some unit staff at the meeting. They spoke of flip chart paper all over the walls. Paper on walls is obviously enough to strike fear into the heart of any health or social care professional. “The wall was covered with paper, and I did query it, and it seemed that this was becoming a person-centred meeting”

Jenna has written a blog post exploring this further, including the views of those she works to support. Yesterday she drew LB’s story to the attention of the Cornwall Learning Disability Partnership Board in a hope to prompt a conversation about others in similar situations.

We’re grateful to Jenna for sharing LB’s story and we believe that the more people who hear about Connor, stop and reflect, the more good will come of his death. Which leads me onto looking forward to tonight’s twitter chat. WeLDNurses (Learning Disability Nurses on twitter) were among the first group of people to offer support to #JusticeforLB. At a time when it felt like we were struggling to break into the system, Sam and Steve both got in touch to offer support. One of the result of that support and leadership from the ground, has been the arranging of three joint twitter chats throughout the #107days. The first of these takes place tonight and focuses on Epilepsy Management. You can read their introductory blog post that explains what you need to do to participate here. The fun kicks off on twitter at 8:30pm and you need to include #WeLDNs in your tweet to join in.

Everyone is welcome to join the chat but I would request that people read and embody the last line in the pre-chat briefing:

As always, WeLDnurses are driven by a positive agenda and while the actions surrounding the death of Connor reflect every never event that should have been, we invite you to join this chat with a positive agenda in mind.

There is a lot of hurt and anger and frustration in our #JusticeforLB community, and no-one is trying to deny or hide that. Tonight presents an opportunity for discussion between people using services, parents, carers and learning disability nurses. We really want it to be about positive learning, not about blame. As I said earlier WeLDnurses have been a huge support and I hope that you’ll join in with the chat with that in mind. See you tonight on twitter.