CB NSG 30th April 2019

An Evidence Based Culture in Clinical Services

for supporting people with learning disabilities and behaviours that challenge across the lifespan


in collaboration with Professor Angela Hassiotis (from Camden Learning Disability Service, Camden and Islington NHS Foundation Trust)

The Spring Challenging Behaviour National Strategy group meeting was held on Tuesday 30th April at St Pancras Hospital, London. It was a very busy day with multiple presentations and a total of 8 workshops. The theme of the meeting was evidence - looking at available evidence, what evidence is needed and how it can be collected, and how evidence can be used to improve support for children, young people and adults with learning disabilities and/ or autism.

Planned outcomes

-          To share examples of evidence leading to good practice and consider the range and types of evidence available

-          To identify actions needed to collect and develop the use of evidence

-          To identify the challenges and potential solutions to collecting and using evidence

-          To identify actions to ensure approaches/ specific interventions for people with learning disabilities are based on evidence

-          Identify actions to support plans for national research on learning disabilities and autism



The first presentation was delivered by Jan Betteridge (family carer) who spoke about how photographs and ‘real life’ evidence had been used to improve support for her son, Ben. Jan’s presentation also highlighted the importance of sharing evidence between the support team and the family, and the value of the support team including the family as a relevant part of the evidence base. This first presentation demonstrated the wide range of forms that evidence can come in and showed that they can all be of equal importance.

Wendy Ewins, lead commissioner for people with learning disabilities at City of Wolverhampton Council gave the second presentation. Wendy used Wolverhampton as an example to show how ‘looking local’ at evidence can be very useful for making effective changes.

The third presentation was called ‘Research Active Workforce: Gathering Evidence in Practice’ and was delivered by Richard Hastings (Professor, University of Warwick). This presentation discussed research as everybody’s business- family carers, people with learning disabilities, autism or both, and researchers.  Logic models were presented as a way to share understanding, expectation and transparency around research projects.


Launch of the PBS Standards


Louise Denne (University of Warwick) launched the new Positive Behaviour Support Standards for Individual Practitioners. These standards are for all individuals involved in the delivery of PBS regardless of their professional background, experience or role. The standards are intended to pave the way for a potential future accreditation system. The standards are free for everyone to download and are available here.


Implementation of Learning Disability Standards

David Harling (Head of Learning Disabilities, NHS Improvement) gave a presentation on implementation of the NHS Improvement Learning Disability Standards. David Harling spoke about how the standards have been developed, how they are structured, and next steps. Future plans for the learning disability standards include embedding the standards in contracts and exploring options for a kitemark scheme. The standards can be accessed here.



Mapping evidence to each challenging behaviour charter point

For each charter action point, we wanted to know the related evidence already available (of either good or bad practice) and areas where evidence is lacking, and so there is potential for new evidence to be collected.

We asked pointer questions beneath each action point to help delegates to think about existing areas of evidence and why new or different evidence might be required. Delegates rotated around the charter action points contributing to each one and learning about existing evidence that could influence their own work.


The evidence mapping exercise also helped provide a measure of whether the action points had been achieved and how to progress them further.




All Core and Associate members of the Challenging Behaviour National Strategy Group have signed up to the charter. To find out more about the Challenging Behaviour Charter, including the action points against which evidence was mapped at the meeting, please see here. 




Attendees had the opportunity to attend 2 of a total of 8 workshops running during the day. The themes of the workshops were wide ranging but each one looked at identifying areas where evidence is needed and discussing how this evidence could be acquired and coming up with actions to achieve this. Most of the workshops began with a presentation from the facilitator, before opening up to a discussion enabling attendees to contribute their ideas.


We have collated and summarised the actions from the workshops. The template for each session, along with a summary of the actions that emerged can be downloaded for each workshop (available shortly).


The workshops available were:


·         Psychotropic Medication use: In depth interviews with family carers of people with learning disabilities


·         Trauma- Evidence and Psychological Therapies


·         Stakeholder Development of an Evaluation Framework for Positive Behavioural Support


·         Using Data as Evidence to Drive Practice


·         Behaviours of Concern Pathways in Camden and Islington


·         ‘Stop, Look and Listen to me’ project: Gathering Views from People with Complex Needs


·         Increasing Evidence Based Practice in Collaboration: how do we as a community develop evidence-based practice?


·         Community Support – collecting and using evidence to make a difference






Core and Associate members were invited to apply to display a poster at the meeting relating to evidence. Some fantastic posters were produced demonstrating how evidence is informing support and being used to improve the lives of children, young people and adults with learning disabilities and/or autism today.


·         Sharland Foundation Research and Impact Network (SF-DDARIN) – collaboration across universities and applied settings to address a lack of research HERE


·         Raising the standards of training in restrictive interventions - supporting a human rights and reduction approach (BILD- RRN) HERE


·         The value of using an evidenced based approach in a local authority special school to help pupils to develop the key skills that they need to increase their quality of life and reduce the chances that they will develop behaviour that challenges others. HERE


·         Investigating the impact of Positive behavioural support on service users quality of life. HERE


·         MacIntyre 2018 PBS Outcomes- An accessible poster summarising our 2018 PBS annual report data HERE


·         Collecting and using evidence to support family members with learning disabilities HERE


.           Developing a lifelong pathway in Specialist Clinical Services: The Behaviour Support Pathway HERE






Feedback from the day was generally very positive. Presentations and workshops were rated as useful or very useful by delegates. Attendees also said they felt inspired and motivated by discussions and were grateful for the opportunity to network with other professionals.




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