Day 103 is our first three-way share of a day. It is shared by Max of the UK Learning Community for Person Centred Practices, Bridget and Sarah from School of Nursing Sciences at UEA, and Steve Broach from Doughty Street Chambers.
When asked why they were supporting #JusticeforLB and #107days the UK Learning Community for Person Centred Practices had this to say:
We wanted to support the #JusticeforLB campaign because it highlighted how far we still have to go in the UK with promoting person centred planning, thinking and approaches. Even though these approaches were right at the heart of the ‘Valuing People’ strategy for people with learning disabilities since 2001, staff at the Assessment and Treatment Unit where Connor Sparrowhawk was confined in the 107 days running up to his avoidable death did not understand what Connor’s family were trying to achieve by holding a Person Centred Review at the ATU, and did not respect this work, saying it “Was not the Care Programme Approach”. It seems clear from the Verita’s report, and from other accounts, that if the ATU had listened properly to Connors’ family when they told them what was important to Connor now and in the future, and the things that would help to keep him healthy and safe (such as a proper approach to his epilepsy), his death could have been avoided.
This is what they decided to do:
I contacted the campaign on behalf of the UK Learning Community for Person Centred Practices. Our national gathering was coming up on April 30 2014, and I wanted to ensure that everybody there heard about Connor’s story. At the closing of the gathering, Gail Hanrahan, a close friend of Connor’s family spoke to everyone so passionately and movingly about Connor and his life. We shared a #JusticeforLB postcard with every participant (about 50 people) and asked them to make 2 pledges:
- Firstly to tell us how they would use their postcard to share Connor’s story, and
- Secondly what they would do in their work to ensure that within their sphere of influence, people and their families were listened to.
We’ve followed up those pledges asking people to let us know what they’ve done. Here are some of the responses we’ve received.
‘My action is to always support people and their families to have a voice and be listened to. I hope my role as Community Circles Connector will help people develop relationships and networks which will support them to be heard and valued’.
Penny Jackson said ‘I am due to deliver Person Centred Thinking training in July to our Independent Futures staff and will be including LB’s story within this’
Every story about how these person centred skills have worked and made a difference increases the impetus for change. If we can succeed in turning these person centred behaviours into everyday habits, at scale across whole services and sectors, then we can create fundamental lasting change in the culture, in the way we include and involve families and in the way we regard people.
Max and TLCPCP have written a fuller write up of their context, their gathering and the actions that have followed. You can read it in full here.
The second group sharing Day 103 are staff with interests in safeguarding and learning disability from the School of Nursing Sciences, UEA, Norwich. When Bridget Penhale and Sarah Richardson were asked why they were supporting the campaign they said:
We didn’t know LB personally but followed his mother’s blog from before he was admitted to Slade House and were very upset at the news of his untimely death. We have followed and supported the development of the campaigns since.
They were keen to ensure that a large number of staff and students at their university heard LB’s story. This is what they have planned:
On Day 103, sessions in the Essential Nursing Practice module for first year undergraduate nursing students are being dedicated to LB. The module covers the role of the Community Learning Disability Nurse and one of the specific topics today is about epilepsy; this is a core condition that our students learn about from the beginning of their programme (but also focus on throughout their course).
The Enquiry Based Learning Package is dedicated to Connor and students taking the module will be introduced to him at the beginning of the day. The Lecture on Introduction to Epilepsy will also be dedicated to Connor.
Information about Connor and the campaign will also be available for everyone working in or visiting our building on that day (through a slide on our plasma screen in the reception area of the building). We will continue to raise awareness about Connor, his life and untimely death throughout the coming year(s) – for as long as it takes.
The final person sharing today is Steve Broach, a barrister at Doughty Street Chambers. Described on twitter yesterday as a miracle, a ‘competent barrister able to put suffering people at ease’, Steve has very generously offered to run a legal webchat, an hour long Q&A session tonight at 7.30pm.
Steve will be holding a free web Q&A on the law in relation to education, health and care services for disabled young people in England. Steve will look at both the current law and the changes coming soon under the Children and Families Act 2014 and the Care Act 2014. He will also cover what the Human Rights Act 1998 should mean for the standard and quality of care disabled young people receive. Steve can only answer questions about the law in England, as the other UK nations have different legal frameworks, although some of the general points he makes will be relevant across the UK.
We are very grateful to Steve for his offer, and know that many of you will wish to make use of this opportunity. To participate you can send your questions in advance using the hashtag #JusticeforLBLaw, or add them on our facebook page, or as a comment to the web-chat blog page, and Steve will answer as many as possible tonight.
Please note Steve can only answer general questions about the law and cannot provide advice on individual cases during this session.
Please share the information about the web-chat far and wide, this is a great opportunity, and one that we hope many people will be able to learn from.