A local children and young people's survey in Buckinghamshire showed that the rates self- injury is much higher in those with a disability compared with those without a disability. Chiltern CCG commissioned a piece of work to develop a robust pathway to improve and standardise the support available to this group of children and young people.
What We Did
A local children and young people’s survey in Buckinghamshire showed that the rates self- injury is much higher in those with a disability compared with those without a disability. To further compound this, national studies show that between 3-12% of children with learning disabilities living in the community show self-injury, with the highest rates in teenagers. Young people with Autism Spectrum Disorder may also self-injure at a level between 10% – 30%. Chiltern CCG commissioned a piece of work to develop a robust pathway to improve and standardise the support available to this group of children and young people. The pathway has resulted in all agencies that work with this complex group of children and young people in Buckinghamshire knowing what to do to prevent the behaviour in the first place and if it does happen are now confident that they are using best practice resources to better manage the situation.
The overall impact has been a more joined up multi-agency approach to managing this highly multi-faceted area of concern with a group of children and young people who are extremely marginalised and often put into the ‘too difficult to deal with’ group. We found that there was already a wealth of good practice happening and we managed to harvest this and not only share it in specialist settings but also begin to embed it within mainstream organisations.
Wider Active Support
The work was originally managed by a multi-agency task and finish group that consisted of representatives from both private and state special schools, staff from Additional Resource Provision (ARP) within a mainstream schools, Children with Disability Social Care Team, Family Resilience Service, CAMHS children with learning disability team, CAMHS neuropsychiatry team, national DEAF CAMHS, Specialist Teaching Services, Educational Psychology, Portage, Community and Acute Paediatricians, Commissioners. Parents, carers and children were involved through established groups and the providers.
The Group was so successful and additionally identified a gap in provision to the point that even though the pathway has now been developed, the group have continued to meet as a network of professionals with a shared interest in children with SEND. There has also been agreement that the special schools will share their very specialist knowledge with the mainstream sector.
The project was initiated from a countywide children and young people’s survey (completed by c.1500 children and young people, with c.15% telling us that they had a disability) where it was shown that the those that thought about self-injury and also those that had claimed to self-injury were much higher amongst those that told us they had a disability. As previously mentioned the task and finish group directing the work were made up of representatives from a wide range of organisations from that sector. In addition there are some well-established groups representing children and young people with disabilities in Buckinghamshire and also groups representing parents and carers. of these children These groups were engaged through the provider organisations.
Looking Back/Challenges Faced
The timescales for delivery were really tight and although we developed the pathway we have not have much opportunity to promote the good work and develop lessons learnt particularly around the impact of sharing learning between specialist and mainstream schools.
The main challenges have been around engaging the correct stakeholders in the work and ensuring that the pathway was developed in coproduction. This was overcome by continually checking that the correct people were engaged, empowering those involved to jointly own the work from its outset, listening carefully to the views of all stakeholders, being appreciative of their input (they were after all doing this on top of their day job!) To the point that this group now regularly meet as a network.
The task and finish group has now developed into a learning network that will continue to drive the pathway forward, understand lessons learnt and develop new ideas and pathways. The network has clear lines of communication and governance to the CYP county wide commissioners group and so can share gaps in provision, ideas for development and lesson learnt.
So far the service has been informally evaluated by those that have been involved. A more formal evaluation is planned looking at how staff feel supported since the implementation of the pathway and the impact on service users and carers.
The work has been shared across the Thames valley- through the Thames Valley Strategic Clinical Network (SCN) as well as across the Buckinghamshire area. A planned series of communications over the coming months will ensure that the pathway is well communicated across the area
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On a final point, developing services for this highly complex group of children and young people is often delayed as it is perceived as too difficult. Our experience has been that if you take the bull by its’ horn, are proactive and begin to tackle it, there is so much enthusiasm and support and so much fantastic work already happening that it is easier than first thought to get new services and solutions up and running.