Day 68: Get a move on #107days

Day 68 was adopted by Beckie, who has been supporting the #107days campaign since the beginning, instigating the bus drawing and supporting our efforts in many ways. Having been knocked back by her local school, undeterred and determined to bring the message of #JusticeforLB to the next generation she adopted a day to use at her local Messy Church service. Here’s what she had to say:

In 1970, Jim Mansell fought to close Ely hospital. When asked later if he might lack the credentials and experience for this reform he said ‘(that) was actually a question that never occurred to me’. Jim (at 18 years old) was not much older than Connor was when he died.

Although the old style institutions have now gone, there are institutions in disguise dotted around every area of the UK. From what I can see, Assessment and Treatment Units (which don’t always do what it says on the tin) can be wolves in sheep’s clothing. All too often, they neither assess nor treat people. People with learning disabilities are not ill. They don’t need to be in hospital. The rest of the world has moved on since 1970 and we should have many more good options for supporting people in their homes and local areas, even when people are experiencing periods of distress and need some additional support.

When I heard what had happened to Connor and the way that Sara and her family have been treated, I wanted to get involved in this campaign. I was (still am) so angry on their behalf. Today will be spent making patches with family and friends for the Justice for LB quilt. To kick start this off, I asked Kerry and Kat if we could get the children involved at Messy Church. So on Sunday the children of Messy Church spent time making patches for Connor, and Kerry and Kat talked about Connor during the service that followed. Everyone left with a flyer and the knowledge of how to donate to the fighting fund.

This is what Kerry and Kat had to say about why they wanted to get involved: ‘At Messy Church we were made aware of the campaign by one of our Messy Church parents Beckie. We wanted to raise awareness about what happened to Connor and ensure that children and young people, especially those with disabilities and special needs, receive the care they need and deserve. We hope that by getting involved we can not only raise awareness regarding young people with autism and other learning difficulties but also keep the care of the most vulnerable in our society in our thoughts and prayers’.

We have to make this campaign count. It’s time for change. For those behind this campaign, like the young Jim Mansell fighting to close Ely over 40 years ago, it didn’t occur to us not to act. Change is the only option. If not now, when? How many more scandals and deaths do there have to be before we as a society sit up and listen.

The long overdue closure of assessment and treatment units is just the beginning. As a research assistant I have observed some amazing support. But this is the exception rather than the norm. ‘Care’ is not enough. Good quality support should be about enabling people to live an engaged and fulfilling life.

This campaign is for Connor. It’s for all the other dudes and dudettes too. All those in those mini institutions dotted around the country. It’s for the dude with severe and profound disabilities placed in a ‘sensory room’ and left to stare at the walls for 45 minutes, because the staff forgot to turn anything on. It’s for the dude whose only pleasure (watching The Simpsons) was denied to him because the staff decided to dish up dinner just as it started. It’s for the dudes who all said they wanted to go to Spain on holiday and the manager booked to go to Corfu because (and I’m quoting here) ‘They won’t know the difference’.  It’s for all the dudes and dudettes living at Orchard Hill, for when the scandal broke, it was bumped off the news because a Posh Spice got a new haircut. I kid you not, a haircut more important than a person. I have never forgotten you, any of you. It’s time to show that the rest of society has not forgotten you too. It is everyone’s responsibility to act. Enough is enough. The time to act is now. It is unthinkable not to.

One of the joys of managing the #107days blog is getting to pick what each day’s post is called. Today I struggled, there were so many options, it could have related to mess or messy (given the context of the day), it could have been enough is enough (no-one could argue with that), but in the end I went with Get a move on for the double connotations associated with that, Southern Health suggesting in a media interview they’d help Sara to move on, Beckie’s patch above – one of my favourite’s so far, and of course what Beckie’s post fronts up, our seeming inability as a society to really move on in how we support and treat and view people with a learning disability. I toyed with Moving on but we’ve apparently been doing that since Jim’s day. Far too slowly.

Day 66: Woodcrafting buses #107days

Day 66 was adopted by Sharon, Heather and the Oxford Woodcraft Folk. They shared LB’s story with their young people on an evening a week or so ago, this is what they had to say:

Woodcraft folk is the cooperative children and young people’s movement. In Oxford there are grass roots groups for young people age 3-18+. We are committed to promoting inclusion, respect and social justice.

The young people of East Wind Pioneers (aged 10-13) were moved by the #JusticeforLB campaign and were able to show their compassion and support through these drawings. We hope you enjoy them!

It has been particularly heartening to see the contributions, support and compassion of young people in today’s activity, and yesterday’s from Ohio, and in several other days. We live in hope that they will grow into young adults who live in, and insist on a more fair and equal society, but we really shouldn’t wait and leave it all to them, we need to keep improving it now.

Day 12: Spreading the word to Healthwatch #107days

Day 12 has been adopted by Beth Gregson who is focusing on bringing #JusticeforLB to the attention of Healthwatch. Here’s why:

As chair of a Healthwatch I am constantly trying to work out what we focus on, there is so much work to do it can feel overwhelming. Do we focus solely on the concerns raised with us by local residents, or do we align our work with local strategies?

The problem with either of those ideas is that people with learning disabilities are often the least heard and are rarely asked, we are very unlikely to hear about concerns unless we actively go out and ask. It’s a bit chicken and egg. Which is why I feel so strongly that healthwatch, as a national network, has a role to play in asking what is happening to our young dudes and what would a national picture look like?

Beth believes that members of Healthwatch are in a unique position, as our role is to champion consumer voice, to gather views and articulate them. Therefore the question of what does good look like, needs addressing.

I am passionate about working towards real co-production of services, and reading the story of LB it hit me hard, both as a mum and a Chair. I asked myself what I could do. Today I am attending a national chairs meeting. While there is no set agenda, I plan to have a conversation, to suggest we respond to the #JusticeforLB manifesto and also to Lord Hardie’s report on Deprivation of Liberty Safeguards and the Mental Capacity Act.

As a national network, I think we have a responsibility to respond to a report like that. To find out about peoples lives, gather the lived expereinces so we can add to the picture and use it both locally and nationally to influence policy.

Beth hopes to raise the profile of what is happening in terms of support for people with learning disabilities with her fellow chairs from across the country. This awareness raising, and bringing the issue to the front of people’s minds, is key to the #107days campaign. Last word goes to Beth, and could be equally asked of many of us as we go about our daily business:

What are we here for if it is not to speak up for those who are rarely listened to? It is not simply about giving people a voice, it’s about supporting others to listen to what’s being said.