We have today published our report which we hope will inform the development of an East Sussex children and young people’s keyworker service.
Our report sets out recommendations for the keyworker service based on feedback from East Sussex families, as well as considering information about what has worked well from areas already developing the programme.
The keyworker programme is an NHS commitment to provide designated keyworkers for children and young people who are autistic or have a learning disability, or both, with the most complex needs. The aim is to make sure children and young people receive the right support at the right time, in a joined-up way, and that the care and treatment happens in the community where possible rather than by admission to a hospital.
We would like to say a huge thank you to the families who gave up their time to talk to us about their experiences. We appreciate how difficult it must have been, particularly being so honest about what are often very personal, distressing, and traumatic details. We are very grateful to you. As we say in the report, you have allowed your experiences to be heard and we must ensure that the East Sussex keyworker programme is designed to reflect the feedback from those with lived experience.
- The East Sussex keyworker service needs to be co-produced; to take note of the NHS community keyworking model; and to learn from existing schemes
- The keyworker service needs to include out of hours provision
- Keyworkers need to be advocates and coordinators who have a breadth of knowledge about health and social care systems
- Keyworkers need to provide a highly personalised empathetic service based on the needs of individual children, young people and their families
- Keyworkers must be suitably trained and experienced and receive appropriate support
- The keyworker service needs to offer manageable timelines and discharge plans
- The keyworker service needs a fully accountable monitoring, evaluation and review process
We have provided this report to the mental health commissioning team at East Sussex, as well as sharing it with senior commissioners at Sussex Integrated Care Board (ICB) and managers from the Learning Disability and Autism Programme.
This report isn’t the end of our involvement. We will continue to meet with NHS commissioners, and other parent carer forums and organisations also involved in the programme in their area, and we will keep you updated on developments.