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.

Day56InclusionNorth

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:

Screenshot 2014-05-19 17.53.04

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.