I'm going to quote this at length and hope that in the interests of spreading the word, the British Academy of Childhood Disability (BACD) is OK with that.
The search is on for the top 10 ideas to establish childhood neurodisability priorities. BACD is asking for suggestions via a survey. You can take part online or by completing a questionnaire that can be emailed or posted to BACD.
Here it is:
Aims and objectives
The aim of the Childhood Disability Research Priority Setting Partnership (PSP) is to identify the unanswered questions about the effectiveness of interventions for children and young people affected by neurodisability from both patient and clinical perspectives. Then to prioritise those unanswered questions that young people, parents and clinicians agree are the most important to create a ‘top 10’ important research topics.
The objectives of the Childhood Disability Research PSP are to:
- identify potential partner organisations and individuals and encourage their participation
- encourage families and clinicians to identify uncertainties about the effectiveness of treatments
- to agree by consensus a prioritised list of those uncertainties, for research
- to publicise the results of the PSP and process
- to take the results to research commissioning bodies to be considered for funding
What is ‘neurodisability’?
For the purposes of this project: "Neurodisability describes a group of congenital or acquired long-term conditions that are attributed to impairment of the brain and or neuromuscular system and create functional limitations. A specific diagnosis may or may not be identified. Conditions may vary over time, occur alone or in combination, and include a broad range of severity and complexity. The impact may include disturbances of movement, cognition, hearing and vision, communication, emotion and behaviour."
What sorts of issues are included?
Any ways to improve the health and/or wellbeing of children with neurodisability about which there is uncertainty of effectiveness. This includes medical and social interventions, mainstream and complementary and alternative therapies, or different ways of providing services; included are anything we could modify in the environment to improve these young people's health.
There's more on BACD's survey web page.
The location of this survey firmly from within the vocabulary and practice of health services is evident. Less obvious is how far BACD is prepared to reach. Read again the last paragraph quoted above "What sorts of issues are included?" and in particular note words and phrases that suggest a wider interpretation:
- "health and/or wellbeing": how far might "wellbeing" extend towards teaching/learning or upbringing as a means towards, let us call it, a healthy sense of self-hood?
- "this includes medical and social interventions": how far might "social" extend towards the "psychosocial" as a means towards, let us a call, a healthy sense of community particiaption?
- "different ways of providing services": how far might this extend to services in, of and by community (perhaps parent-led) rather than large corporations and care systems?
- "anything we could modify in the environment": well, where to start on that one!
I have more than once (slightly misquoting) mentioned something I read of Dr Hari's: "conductive education is about enhancing the quality of intention to achieve". Or what some might describe as "having agency in one's own life" or being "the author of one's own story" - essentials, I see it for "health and well-being" or that word familiar to al in conductive education, "orthofunction".
There is in this survey, perhaps, an opportunity for conductive education in the UK. I say perhaps, because where is the body that can represent conductive education in the UK. Last November, tentative steps were taken in the event at Yorkshire Sculpture Park hosted by Paces, towards such an organisation. Some of us have met since at PACE in Aylesbury. The next meeting is scheduled again for November. Meanwhile, opportunities slide by.
Which leads me to one more thought as I scan the BACD survey webpage.One objective of the Childhood Disability Research PSP is to "identify potential partner organisations". The list of organisations that are partners already makes interesting reading.
I think I might complete the BACD survey.
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Afterword
On later downloading the survey as a Word document, I was disappointed to read these examples, much narrower than the scope suggested by the sections quoted above:
To help you understand what we mean, here are some examples of 'unanswered questions' from priority setting partnerships that have run for people affected by other health conditions:
- Are breathing exercises helpful in controlling asthma?
- What is the evidence for gargling aspirin to relieve a sore throat?
- In individuals with cleft lip/palate when is the most effective age to begin speech therapy?
- Is monochloroacetic acid more effective for the treatment of warts than liquid nitrogen?
