About 20 years ago, I worked in a respite service for Certitude where we provided what was then considered an innovative service offering activity based respite to people with learning disabilities and their families. We made a point of making sure that people who were considered the most complex or challenging (and therefore other services did not work for them) could come along and do something they loved and we would do everything we could to make this work for them and their families. The needs of the people we supported and their families dictated what we did and how we did it down to how we were staffed and what times we worked.
Angela was a young woman who we supported. She was labelled challenging but actually she was simply a determined, bright and feisty woman who knew exactly what she wanted and responded to the unreasonableness of this being denied her. We worked with her and her family to give her good support and do what she wanted and she was one of the many people we supported that really taught me about what good care and support is; how we need to let go of power, egos and everything we have learned and just listen carefully and act on what people say and be honest and real.
I often think of Angela at Christmas. We had a Christmas party at the respite service and we were all too busy to really focus on individual people- a big mistake. Angela was bored and wanted some action and she got it by pushing a fire alarm and getting some men in uniform to give her some attention. The fire brigade arrived quickly as we were being evacuated from the building into the freezing cold night. Angela grabbed a fireman by his arm and tried to coax him into conversation but he moved her to the side dismissively trying to get into the building. Her dejected response “ Merry ******* Christmas” was a piece of perfectly timed comic genius that is often repeated in my house at Christmas.
I wanted to write a festive and upbeat blog to wish everyone a happy Christmas but I’d rather be honest and real because the truth is, 2014 was a tough year. It has been a year of scandals about incompetence, neglect and abuse in the care industry, a year of inaction to address the problems and a year of reports, reviews, endless statements and blogs. It has been the year when people who die and are abused and neglected in care and their families are treated with breathtaking contempt in full public view by the organisations that are paid to care for them. So, sorry that my festive offerings are meagre this year and instead I will focus on some resolutions for 2015.
Investing in people speaking for themselves
One of the big highlights of this year was seeing Gary Bourlet of People First England on primetime news responding to the Bubb report . A person with a learning disability speaking out and challenging and offering millions of people an alternative view of people with learning disabilities to the usual ‘voiceless victim’ portrayed in the media and by charities. Watching Gary Bourlet and Shaun Webster from Change speaking and challenging at political party conferences has convinced me that us charities do not need to speak up on their behalf anymore- there are plenty of people and families that can speak up better than any of us professionals can. My first new year’s resolution is as a charity, to stop speaking on behalf of people with learning disabilities and put the money and resources we have into making People First England stronger and louder. I will also encourage other organisations that speak on behalf of people with learning disabilities to do the same.
Truth and Reconciliation
2014 has been the year when social media has come into its own in social care and those who have suffered injustice, neglect and abuse are sharing it with the world. This new openness and sharing through social media has highlighted the awful effects on people’s lives and we are being touched by this in ways that had never been possible previously when all we got was a newspaper report or a 1 minute slot on the news at best. We are feeling the pain of people’s experiences alongside them through facebook, twitter and blogs and this is in stark contrast to the sanitised, jargon filled and often meaningless communication that comes from some health and social care organisations. A lot of damage has been done to people with learning disabilities and their families by organisations, people and systems that think they are doing the right thing and mainly want to do the right thing but don’t. Inspired by the blog from http://www.changepeople.org/blog-and-news calling for truth and reconciliation I want to see a more honest dialogue between health and social care organisations and the people and families we support. It was shocking and sickening to see the carefully worded and defensive responses from 3 NHS Trusts to reports on their poor services and the deaths of people in their care. If social care and health organisations invest less in promoting themselves positively and instead, really listen to what people and families are experiencing and encourage their staff to communicate with honesty, humility and humanity, we might get somewhere in building bridges and moving on.
Time for a rethink
Any CEO of a learning disability charity will have drawn breath when reading this blog http://mydaftlife.wordpress.com/ by Sara Ryan about the effectiveness of charitable organisations that work on behalf of people with learning disabilities. It cuts right to the chase and questions our existence, rightly. It has focussed on a few named charities but the same applies to many more, including us at H&SA. Like others, we have invested significant money and time since Winterbourne View on trying to change things. We are good, knowledgeable people, doing a lot of good work but if nothing has changed, and things are actually getting worse, then we are not doing the right things and we need a radical rethink about what is needed. My second new year’s resolution is to encourage an open and honest conversation about this between self advocates, families, us and other charities and have a rethink about this. I welcome comments and thoughts on how we might do this.
Wishing you all a Merry ******* Christmas and a 2015 filled with honesty, openness and humility!