It’s been about 8 months now since the idea for the #LBBill was hatched. Sparked by a tweet by Mark Neary. Acted on with a remarkable combination of expertise, cheek, experience, knowledge, rage, good cheer, humour, collectivity and common sense. What could have been a throwaway comment became something more substantial. Talk turned to action. And gained layers of substance through a chaotically (un)organised campaign of crowd sourced feedback.
Details were thrashed through with meticulous attention by people, disabled people’s organisations, self advocates, carers, professionals and others. This collective focus enabled a remarkable measure of sense to be brought to version 2. Groan dimensions accompanying much legislation/social policy erased by strong statements by those who know.
On June 4th, the ballot will be held to select MPs who will have the opportunity to apply for a Private Members Bill (PMB). We really need to encourage all MPs to get on board with the Bill and, if they’re selected high up in the ballot, lobby the socks off them.
I don’t know much about PMBs. I do know that the #LBBill is the outcome of remarkable endeavour, commitment, love and determination. I can’t imagine there are many better prepared bills in terms of whatever you want to call public involvement/engagement/co-production or just getting on with it, together. Or bills that are such a remarkable expression of joy and celebration of lives too often dismissed and ignored.
I’d champion it if I was an MP. Without hesitation.
I have a response today from my MP following my request for his support for the bill, I am directed to ‘ No voice unheard ‘ no surprise there but I am shocked that he has included an entire paragraph relating to Southern Health NHS Trust . He understands they have acknowledged that they failed to undertake the necessary actions to keep Connor safe and have apologized unreservedly to Connor’s family. Didn’t expect that.
I have written back to express my disappointment in his decision to use a template reply. My daughter spent five years as a wheelchair user living in a single room of our 800 sq ft home in his constituency fighting for a home. I am very well aware of what exists by way of meaningful rights for disabled people and it amounts to little, I didn’t appreciate the run along dear and read what’s already on the books paragraph. Why the fulsome endorsement for Southern Health NHS Trust ?