During my doctoral journey, one of the ideas I explored a little was that of who is recognised as a member of the community of practice in discussions around children, young people and others who are labelled as having special needs (or additional requirements or learning disabilities or…). This theme has re-emerged for me in some of the findings and recommendations contained found in the independent inquiry report into the death of Connor Sparrowhawk – an 18 year old who died in the bath while a patient in an NHS Assessment and Treatment Unit. Connor’s death was wholly preventable. He was a fit and healthy young man, who happened to also have epilepsy and was learning disabled. If he had been properly cared for, he would almost certainly still be alive today.
The independent inquiry made a number of important statements about the failure of the Southern Health NHS Trust to listen to Connor’s parents:
Connor’s parents’ experience and knowledge were not used in his risk assessment or care plan.
The inquiry recognised that this was not only a failing of the health care professionals, but of others involved in Connor’s care:
The community team could have been better at speaking to Connor’s family about the options they had for Connor’s care.
The independent inquiry included in its recommendations:
Southern Health should make sure they ask families and carers for information about patients and keep it in their plan.
When I read those comments and recommendations, it seems astounding that such things need to be written down. Isn’t it plain old-fashioned commonsense that the families and carers of people with learning difficulties should make a contribution to the care plans of those they love and care for? Yet somehow, parents and carers are all too often sidelined when it comes to being fully included in the discussions about the people who matter most to them!
As worryingly, the people at the heart of the planning process – variously referred to as patients, service users, consumers, clients – are not as fully involved in decisions concerning themselves as they might be:
Connor could have been more involved in his care plan.
Communities of Practice
It is probable that communities of practice have always existed, but they were first given that label in the 1990s by Etienne Wenger and Jean Lave. The idea was drawn from observations of tailors in a rural community; young people within the community learned their tailoring skills from those proficient in the craft, moving from the periphery to the centre of the community of practice over a lengthy period of time. As their skill was recognised, they too contributed to sharing their skills with others who were less experienced. The model is sometimes described as situated learning and sometimes as informal learning, but whatever the label, there was no formal training programme and no certificate at the end, but the acknowledgment of expertise was that given by colleagues.
In the UK – and no doubt elsewhere – there is a tendency to privilege learning that is formally accredited over that which is otherwise acquired. As long ago as 1998, Liz Todd and Steve Higgins stated:
…if you try to define the knowledge of parents and that of professionals, the list will contain very similar items, making statements about knowledge difference problematic…
So why is it that parents and carers are so readily sidelined by many practitioners?
In the case of Connor, one of the reasons might be that Connor was 18 and therefore legally an adult. As an adult, he had a right to make his own decisions, but there was also a need to make an assessment of whether he was capable of making those decisions and whether the decisions were about things that made any sense.
However, perhaps more fundamental is the power differential between practitioners and parents. In order to maintain their position it would seem that practitioners have to exclude parents from the community of practice, even though parental knowledge and expertise would enhance decision making and parents and practitioners have much to learn from each other. Many practitioners will privately acknowledge that they learn from parents and from the people they care for, but the positive working relationships may disappear from view in formal meetings and decision making.
So how do we ensure the community of practice around any individual in need of care, treatment or support includes all the relevant people, including the individual who is in receipt of that care, treatment or support?