Success and learning from Heywood, Middleton and Rochdale Keyworking service

The NHS Long Term Plan included a commitment that ‘by 2023/24 children and young people with a learning disability and/or who are autistic with the most complex needs will have a designated Keyworker’.

Heywood, Middleton and Rochdale Keyworking service began as one of 13 areas across the country to be chosen to pilot a service in their area. Pilots were appointed after a decision making process including representatives from the National Network for Parent Carer Forums and other families and young people.

In the area two keyworkers are currently working with nine families, a third  keyworker began work in December 2021 with a plan to have three keyworkers supporting up to 30 families by mid-2022.

One young person who is benefitting from the service is Luke* who is 15 years old and autistic. Living at home with his parents and a younger sibling Luke was struggling to manage his increasingly aggressive behaviour at home. Luke was engaging well in school but struggling with impulse control, he was in a class with a very supportive teacher who communicated regularly with Luke’s mental health worker who had known Luke for several years.

At home Luke’s family were struggling with his violent behaviour, which included holding a knife at dads throat. His mum and younger sibling had been locking themselves in the bathroom to stay safe while his dad restrained him and Luke had begun to refer to himself as ‘the beast’. A variety of medication had been tried and Luke had spent some time living at his grandparent’s house to provide his family with some respite.

Speech and language therapy support had been offered and Luke had been referred to children’s social care. However the family were reaching crisis and wanted support so that Luke could remain with them in the family home. Luke was referred to the dynamic support register, with a red level of risk and was allocated a Keyworker. At this point Luke’s parents were requesting restraint training. The keyworker said: “Having the opportunity to have an overarching view of the support being offered and to explore the impact of this on the young person enables a different level of understanding regarding what is working, could be improved upon or is missing”. The allocation of a Keyworker ensured that Luke’s feelings were captured and supported.

“Luke is funny, articulate, enjoys saying what he is thinking and deciding what he and others should be doing. Sometimes this is very positive, sometimes it creates situations where there is a significant level of risk. As a result of this his parents were finding keeping the home environment safe almost impossible and they were heading into family breakdown”.

Working with the family and supporting Luke to spend time doing the things he likes has led to:

  • Fewer incidents of physical restraint
  • Joining an NVQ course at a local football club and a drama group
  • Improved confidence, communication and understanding of his behaviour
  • More family engagement with children’s social care
  • Discussions about using Luke’s personal budget differently.

Luke’s mum said: “It’s nice to have someone who is constantly trying to find things to help and support us. Our keyworker has linked us in with other services and has worked alongside them to ensure he is open to the new relationship. I still feel there is more work to be done as we continue to struggle with his behaviour. It is good to know that there is someone there to support us and hear our sons’ views”.

Luke said: “My keyworker is good, I can talk to them and we try different things”.

Following the intense intervention and support of the Keyworker, Luke is now on a green level of risk on the dynamic support register. The family now feels able to support Luke after the work and interventions provided by the Keyworker.

The Keyworking service in Heywood, Middleton and Rochdale is committed to embedding a service which works with children and young people who are risk of admission to specialist hospitals to provide early support and crisis support when necessary so that fewer children and young people need residential and hospital stays.

If you have any questions about this case study please contact alison.gormley1@nhs.net

*name has been changed.