Case study summary
The London Borough of Enfield, who are part of the North Central London Transforming Care Partnership (TCP), have used positive behavioural support (PBS) to help people with a learning disability, autism or both to live in the community. This supports the national Transforming Care Programme which aims to make sure people live in homes, not hospitals.
Positive Behavioural Support (PBS) identifies what things may be causing a person to behave in a challenging way, how to prevent them being in that situation, and what to do if the challenging behaviour occurs.
A number of their staff, including psychiatrists, social workers, psychologists, community nurses, occupational therapists, art therapists and speech and language therapists are trained in PBS, who in turn give training and support to providers.
They also work with individual families to identify how to prevent behaviour from escalating and show how to regain safety for themselves and their son or daughter, if it does.
When clients and families request help for behaviour that’s hard to manage, they can be referred for PBS by the professionals and service providers working with them. The Learning Disability Service hold a multi-disciplinary risk management panel every fortnight which can also identify people who might benefit from PBS.
A PBS-trained clinician will carry out a holistic assessment and behavioural analysis using observation and charts to understand what the person’s behaviour is indicating. They will also analyse the fit between the person and their environment, including their support. They use this information to develop a PBS plan with the family, provider and carers.
This identifies preventative strategies, which may involve the client and others learning new things, making changes to their environment and increasing the quality of the client’s life. There are also strategies for the times that challenging behaviours do arise, but these are never punishment-based.
“These positive ideas improve their wellbeing, and increase their happiness and we find that clients are keen to start,” says Niel Niehorster, Head of Integrated Learning Disabilities Services at Enfield Council. “They can learn new skills and actively take part in meaningful activities. We also give our staff training in new ways to engage people.”
The PBS plan is used to make sure the person isn’t in put a position where they need to respond to the things that are causing their challenging behaviours. It also gives them and the people around them strategies to use if challenging behaviour occurs.
“We generally see that as we respond differently, people’s behaviours reduce. It’s been very successful in improving the quality of life for people,” says Niel.
They are currently working with children’s services and child and adolescent mental health services (CAMHS) to develop a specific PBS pathway for young people aged 16 and 17 as they lead up to transition. Being set up using money from NHS England’s Better Care Fund, it will be seamlessly integrated with the adult pathway. They will use the risk management panel to prioritise young people who would otherwise be at risk of inpatient admission.
Niel says: “When young people get to 16 they’re getting physically bigger and it’s often at that point that families might say they can’t cope.”
Niel is confident that the new pathway will be better financially, as well as for the people receiving the service: “It has to produce savings for the local authority and CCG in order to be sustainable. But we don’t have to avoid many out of borough residential placements before we save money.”
Claire is a young woman identified with autism and learning disabilities. From childhood she had a phobia of babies and young children. If she encountered a baby, young child or family she would become anxious and agitated. Claire would take flight if she saw a baby or thought they might be present, and would check cars for baby seats. There was a risk of her hitting out or running off into traffic.
Over the years, the impact had been immense. Her family were barely able to go out in the community, and had difficulties on their family holiday. They had to choose very quiet areas where there were very few people, assess accommodation carefully and go out only at quiet times of the day. Even with this, there was a lot of fear and tension about keeping Claire and everyone else safe. There were dangerous incidents on holiday with running away, and on another occasion hitting out and causing injury.
The team at Enfield worked with Claire and her family and college to understand her fear of babies. They used an adapted psychological intervention and a positive behaviour approach. Claire’s behaviours improved. She showed more tolerance of babies and families as, for example, she was able to walk past them at a distance. Her parents gained more confidence in being able to take her on holiday, although they still need to avoid babies and young children who may be upset. Recent short family holidays have gone smoothly and were much enjoyed by the whole family. On the service’s recommendation, carers were able to take Claire out on in the community to the local supermarket and park with 2:1 support. Although her phobia is not cured, Claire’s family feel that they have made some positive steps which they hope to continue to build on.