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).

JennaP1

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.

JennaP2

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.

WeLDNurses

Day 8: Growing awareness #107days

Today is a shared day, between Zinnia and Kay. Zinnia is a horticulatural social enterprise, based in East London, that works with anyone with a support need. They were one of the first groups to get in touch when we launched #107days and they will hold a day when volunteers plant stock and then a % of any profits made will be donated to LB’s fighting fund, established to cover legal costs. Also importantly when this stock is sold, Zinnia will share information about LB with it, growing awareness.

The second person who adopted Day 8 was Kay. She is attending the Lincolnshire Autistic Society Annual Conference today #LAS2014. She is taking some of LB’s bus postcards with her. Here’s why:

I’m sharing the #justiceforlb story because I too have a ‘Young Dude’ and my heart breaks just thinking about the whole scenario, as I cannot even imagine how difficult it must be for LB’s family.

It is just unbelievable what has happened.

LB and his family were seriously and tragically let down by a system and people within that system, that are supposed to be there to help and support.

No words are enough, so perhaps sharing the story will highlight the tragic, preventable events and hopefully go some small way to ensure this ever happens again in the future.

LAS2014

Kay and Zinnia are both helping us spread the word and grow awareness (see what I did there). If you would like to get involved with raising funds or awareness then please let us know. Thank you.