Bristol, South Gloucestershire and North Somerset Clinical Commissioning Group (BNSSG CCG) share strong governance for disabled children, including for Continuing Health Care. There is also strong joint commissioning between the CCG and the Local Authority. Children and young peoples issues are also represented on the Transforming Care Partnership (TCP) Board. There has been good, well evaluated, provision for behaviour support for children with learning disabilities. There are dynamic risk thresholds in place and a risk strategy that helps to prioritise the CYP most at risk of needing support. There is a Positive Behaviour Support (PBS) service, good short breaks (respite) and, if needed, emergency care can be provided into the home too. Provision is person centred rather than a service based approach. As a result no child or young person with a learning disability (who may also have autism) has been admitted to an Assessment and Treatment Unit (ATU) or mental health hospital bed from Bristol in the last 6 years. There are also very few children and young people with a learning disability (who may also have autism) in residential schools. This process and approach has been rigorously evaluated to demonstrate the positive outcomes for children and families.
The CCG commissioner also attends CETRs and CTRs to assure provision, to plan and to identify gaps. They are used for preadmission, as a preventative step, and for post admission to plan discharge. The CCG commissioner looks to personalise education and wider support post discharge, often saving the Local Area a lot of money. For example a young person with Obsessive-Compulsive Disorder in a Tier 4 hospital remained in his community with a PBS programme and a mentor in a new educational setting at a cost of about £50k per annum (compared to a possible £280k in a residential school).
Behaviour support for autism
Through this work it was identified that behaviour support for children and young people with autism was a gap that needed to be filled. Those who were being admitted as an inpatient were often in mainstream school and without a learning disability and they did not meet the criteria for existing services. Child and Adolescent Mental Health Services (CAMHS) did not have a wide experience of working with this cohort and provision is limited through social care for this group.
As a result, an intensive PBS service for Autism (iPBS-A) programme is now running as a two-year project funded by NHS England and local children’s commissioners from both CCG and LA to support the wellbeing, development and behavioural and mental health needs of children diagnosed with Autism. Its purpose is to provide specialist intensive therapeutic support for children with an Autism diagnosis whose behaviour and/or mental health needs is putting a lot of stress on their family/carers and consequently placing them at high risk of social exclusion (school, home, short breaks/respite breakdown). The iPBS-A programme can work into school if the young person is in school or can help to facilitate a return to school.
Families using this service have said:
Describe your experience so far of working with the iPBS-A service?
Family A - Amazing, supportive, always available for advice. The project is very much needed and a valuable safety net for families in situations like ourselves. The team are positive and understand all our needs.
Family B – I’ve found IPBS-A to be incredibly friendly and approachable. They have been very thorough in gathering information on our family which is now being used to influence strategies to help us.
Family C – It has been positive. They (IPBS-A) think about the whole family, not just my child’s needs. They introduce new ideas. It is intensive and I did worry it might be too much but the regular contact is helpful although initially hard to get a rhythm that works. They are flexible and work with us to make a best fit.
What impact has the iPBS-A service had on your child?
Family A - My son always looks forward to his weekly appointments. We can see progress because of the interaction from the team.
Family B – Initially he found the questions as part of the information gathering to be intrusive and frustrating. However, IPBS-A have adjusted their strategies and he now finds interacting with them a more positive experience.
Family C – Helped having such regular contact with people and having a routine, she is going out more, trying new things, doing more activities and getting used to new people.
What impact has the iPBS-A service had on your family?
Family A - It has provided us with guidance and ways of working differently with our son in a positive way.
Family B – At the moment there has not been a significant impact as we are only just starting to look at implementing strategies. However the process so far has made me think more about my interactions with my son.
Family C – Some pressure off the family to keep my child busy, gives us some break. Helpful learning new skills such as mindfulness. Helpful thinking about the family’s needs and new perspectives on the situation.
Jane Guvenir, Continuing Health Care Manager and Designated Clinical Officer, NHS Bristol, North Somerset and South Gloucestershire Clinical Commissioning Group (BNSSG CCG)
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