Day 62 was adopted by Nikki, John and André, three of the somewhat magical beings behind the Learning Disabilities Elf blog. If you’ve not come across their blog before you really should check them out, they contain a wealth of information. Each week the elves get to work and scan new evidence from websites, databases and journals, and identify what is important to professionals working with people with learning disabilities, in health or social care. When we asked them why they chose to support #107days and #JusticeforLB this is what they had to say:
When I was asked to write a short explanation of why I wanted to get involved with the #107days campaign, I sat for ages, blankly staring at the computer screen. All I could think of was why anyone wouldn’t want to get involved. Contributing to a tiny piece of the huge #107days campaign armour was just such an obvious thing to do. Yes, I am a mother and yes, I know Connor’s mum Sara but, like I say in the blog post, Connor’s death has affected a lot of people in a lot of unexpected ways and I am one of those people. Bizarrely, after years working in the mental health field, raising awareness, advocating change and fighting for fairness, something ‘clicked’ in me after Connor’s death. I guess I have come to understand what the responsibility of making a difference really involves. Change isn’t some abstract ‘thing’, ‘out there’ that just ‘happens’; it is the slow but steady accumulation of lots and lots of voices, tears, words on a page, media noise created by people like you and me, that builds into an angry, indignant, desperately hopeful roar. This is day 62 of 107 but these 107 days are just the start.
Like Nikki, it was easy to say yes to getting involved in the #107 days campaign to make what small contribution I can. Thinking about what the Elf could bring to the campaign, I was very aware that whilst we are all about pointing to what the evidence says about good support, often that evidence may not be considered ‘gold standard’ – we are not able to report lots of meta-analyses or systematic reviews, and there are lots of concerns about research methodology. But despite that, there is good evidence of what works and examples of good practice. The guidance available to professionals is voluminous, and the key messages about what needs to be done are becoming very clear –personalised support, positive behavioural approaches based on clear functional analysis, the provision of active support and respectful partnership with families. All these things are necessary building blocks for good services. The pace of change remains frustratingly slow, but we hope we can make what little contribution we can by continuing to provide easy access to the evidence.
Connor’s tragic death is yet another wake-up call to a health and social care system struggling (and sometimes failing) to cope with the complex needs of people with learning disabilities. We have heard so many heartbreaking stories over recent years of people who have not received the care they deserved and of simple mistakes that have had fatal consequences. Our aim with the Learning Disabilities Elf website is to bring reliable research to the health and social care professionals who need it most; to help them improve their practice and in turn to improve services for patients. There is no magic wand to change the system and prevent future harms from being committed, but there are lots of examples of good practice that we can promote to staff who care for people like Connor on a daily basis. Ultimately, the system is still a long way from providing the kind of care that people need and deserve, but if we make evidence-based research a core part of that system, then we will give health and social care professionals the knowledge they need to provide better care.
In the spirit of making a practical difference they scoured the evidence and Nikki wrote a post for Day 62 that focuses on what the evidence says about people with learning disabilities and unmet need.
Here Nikki introduces the post:
The reaction to Connor’s death has been huge. Outrage and desperate sadness have fuelled what is ultimately an overwhelmingly positive, proactive and determined campaign for change. #107days of action started on Day 0: Wednesday 19 March, and will continue until Day 107, the first anniversary of LB’s death, Friday 4 July 2014. Today is Day 62.
I work with Connor’s mum, Sara. It was unusually busy in the office, the day that Connor died, with many of our group’s normally nomadic researchers home to roost. As Sara ran out of the office, phone glued to her ear, none of us had any idea what was coming. As a research group dedicated to giving a voice to people’s experiences of health and illness, we are all used to doing our very best to maintain a healthy distance from the often sad and disturbing stories we hear. This was different and Connor’s death has changed us all.
The ups, downs and general hilarity of life with Connor are well-documented by Sara in her blog, as is the pathway to Connor’s admission to the local psychiatric learning disability unit as his behaviour became increasingly challenging. Her accounts of his growing agitation and anxiety and the monumental frustration and effort involved in navigating the mental health and social care system are at once moving and infuriating. The post on the day he was admitted to the unit is bitterly poignant, tinged with both relief and disappointment, completely unaware of the horror on the horizon. Following his admission to the unit, we see Connor being funnelled down a heavily-scripted, non-patient-centred path, and Sara’s blog posts make one thing startlingly clear: a marked deterioration in Connor’s state of mind and sense of self, leading to him being sectioned, medicated and misunderstood. Having been neatly categorised as “learning disabled”, Connor’s epilepsy went ignored. This myopic approach ultimately caused his death.
However, this is not a soapbox rant or naïve call to arms. The unit in question has been closed to new admissions, the legal fight for justice is trundling along. Rather, I asked to write a blog for one of the #107 days because I want to be part of the growing army trying to jump-start a conversation about why it is that our learning disabled and mentally ill friends, siblings, parents and children are still so marginalised by our health system. Despite our apparent familiarity with words and phrases like depression, Time to Change, patient-centred and equitable in our public discourse, we still treat people with learning disabilities and mental health problems like second class citizens. We all know that mental ill-health is common, affecting one in six adults at any one time and we also know that people with learning disabilities have an increased likelihood of developing mental ill-health, with figures ranging from 25-40%. So can it be that research consistently highlights evidence that people with learning disabilities have higher levels of unmet need and receive less effective treatment?
Please visit the Learning Disabilities Elf blog to read Nikki’s post that summarises the evidence, for Connor. Please also join in the discussion, we need to understand why when we have evidence, it is not shaping practice. As ever, all your thoughts are very welcome.