by George Julian
What do you do when the law just isn’t working?
a) get angry, complain a lot and wish things were different
b) write to your MP and request that they change things
c) bring people together to support you to change the law to makes things better
d) all of the above.
Our approach is d) all of the above and the laws we feel aren’t working are those dictating learning disability care. Too many disabled people are sent to hospitals, assessment and treatment units (ATU), and other institutions against their will, and that of their family members or allies.
The idea to get a group together to draft new legislation, a bill that we could ask an MP to back, designed to stop this, came from Mark Neary. Mark has previously won a long running battle with Hillingdon council to bring his son Steven home to his local community. Mark blogged about creating an ‘LB Bill’ – the ‘LB’ referring to Connor Sparrowhawk (known online as LB, Laughing Boy) who last year died a preventable death in an ATU run by Southern Health.
Mark shared his idea on social media and was met by wide ranging support from #JusticeforLB campaign supporters and others with a personal and/or professional interest. A core group of supporters joined Mark to work on the LB Bill, including Steve, a barrister specialising in Human Rights Law; Sara and Rich, the parents of Connor Sparrowhawk; and George (me) who provides social media support.
What has emerged is a bottom up, open-source, inclusive campaign that aims to change the law to make it harder for the state to force disabled people to go into institutions and to keep them there. LB Bill will also require greater respect for the wishes and feelings of disabled people and family members when decisions about where a person lives get made.
The LB Bill will try to change the law through a Private Members Bill; the timescale for this activity can be viewed on the LB Bill website here. The first step is to share a draft Bill (hopefully by the end of this month) with interested parties; we hope lots of people will tell us what they think. We particularly need to hear from disabled people and we are developing an Easy Read version of the draft Bill, and a pack to help collect views. There is an Easy Read background paper to the Bill here.
All activity around the LB Bill and JusticeforLB campaigns is crowd-sourced. There is no budget and no staff, just hundreds of people united in their concern for the way that disabled people are being treated.
Social media has provided the platform to bring people together, but for the LB Bill to be successful we need to move the campaign offline. There are still many areas where we need support, either financial or skill based (particularly in translating materials into easy read and accessible formats). That said we have been delighted by the response to date, including at least one local authority who have offered to trial the LB Bill to understand the wider practice and financial implications.
It is important to note that existing approaches to improvement of provision for learning disabled people have failed to generate much, or any, change. In the last six months alone, Bill Mumford, the second person to hold the post of Director of the Winterbourne View Joint Improvement Partnership, resigned following two separate investigations into allegations of abuse within services run by MacIntyre, the learning disability provider of which Mumford is chief executive.
This was rapidly followed by something of a communications crisis for NHS England as Sir Stephen Bubb declared himself and his provider mates as the solution ‘A challenge, clearly, but one I was up for’ before rapidly backtracking a week later having to admit he’d forgotten to include people who use services in his thinking and breakfast meet due to ‘a sin of omission not commission’. You can judge for yourself.
The minister for care and support, Norman Lamb, spoke in the House of Commons in July of the ‘scandalous case of Connor Sparrowhawk…there was acknowledged negligence in the care and these things cannot simply go by without a proper and effective response to stop repeats of this sort of thing ever happening again’.
LB Bill is just one step towards ensuring what happened to LB, doesn’t happen again. We’re not waiting for ‘the system’ to change things, we’re doing it ourselves. Please, join us.