When someone has a severe learning disability and complex needs, it can be difficult to know how they are feeling or why they are showing a particular behaviour. Research and clinical experience shows us that when it comes to behaviour and wellbeing, the most important things to consider are: pain and discomfort, sensory sensitivity, anxiety, poor sleep, emotional control, impulsivity, insistence on sameness, and differences in social behaviour.
It is also very important to consider whether behaviours are learned and if the person has difficulties letting others know what they need or how they feel. These things can each cause particular behaviours and affect someone’s quality of life and they are often linked with each other. Making sure that these things are thought about, checked and assessed is the first step to improving wellbeing and behaviour but it can be hard to know where to start. So it is helpful for carers, parents and professional to have a list of things to work through together and keep track of someone’s behaviour and wellbeing. The Be-Well checklist is a tool that does this.
The Be-Well Checklist is currently being updated based on the feedback provided and the final version will be uploaded here when it’s available.
Professor Chris Oliver presented the Be-Well checklist in an online information event hosted by Unique on the 29th November 2020.
Instead of charging for access to this presentation , we are asking people to support Unique in these unprecedented and very challenging times. Now more than ever, we need your help to continue our work. Please consider making a donation for watching this event. We suggest a donation of £5-£10 but whatever you can manage, however small, would make a real difference.
To Donate today, please visit www.rarechromo.org/donate and then scroll down to click on Give a One Off Donation and follow the instructions from there. Thank you for your support.
A recording of Chris Oliver’s presentation is below:
Behaviour Links and Resources from Chris Oliver
|From the chat:|
|Be-well journal article||https://authors.elsevier.com/a/1c88o6EIwShwqA|
|Feedback Survey for the checklist||https://www.surveymonkey.co.uk/r/RJKBP8W|
|Vagus Nerve Stimulation Could Help Treat Behavior in PWS||www.fpwr.org/blog/study-shows-vagus-nerve-stimulation-could-help-treat-behavior-in-pws|
|Cerebra Legal Rights Service||www.cerebra.org.uk/get-advice-support/legal-entitlements-problem-solving-project/|
|From the presentation:|
|Findings from high quality research studies in genetic syndromes||www.findresources.co.uk|
|Cerebra’s Pain guide for parents||www.cerebra.org.uk/download/pain-a-guide-for-parents/|
|Research papers (freely available research papers – search by name)||www.researchgate.net|
|Assessments, Measures & Manuals (need to create an account but then can download assessments used by Chris Oliver and his team)||www.findresources.co.uk/professionals/login|
|FLACC pain scale||cerebra.org.uk/download/flacc-pain-scale-infographic/|
|Autistica (includes info on autism and anxiety||www.autistica.org.uk|
|Jacqui Rodgers website (materials for uncertainty)||research.ncl.ac.uk/neurodisability/theteam/jacquirodgers/|
With thanks to Professor Chris Oliver. Chris Oliver is a Professor of Neurodevelopmental Disorders at the University of Birmingham and director of The Cerebra Centre for Neurodevelopmental Disorders. He trained as a clinical psychologist at Edinburgh University before completing a PhD on self-injurious behaviour in people with intellectual disability at the Institute of Psychiatry, London. His main research interests are behavioural, cognitive and emotional disorders in people with severe intellectual disability, genetic syndromes and autism spectrum conditions.