Autism and learning disability keyworkers – a new workforce supporting children, young people and families to help avoid unnecessary admissions to mental health hospitals in every integrated care system (ICS).
The NHS Long Term Plan includes 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, implementing the recommendation made by Dame Christine Lenehan in These are our children.
This has involved creating new keyworking services for children and young people who are at risk of mental health hospital admission or are in inpatient settings. Every ICS now has an operational, or soon to be operational, keyworking service, funded by new money from the NHS Long Term Plan delivered through each of the seven NHS England regions.
Children and young people are referred to keyworking services when they are included on an ICS’s dynamic support register in line with new policies.
The approach to developing these new community keyworking services has been one of working in partnership and coproduction with children and families. Some areas now use different words to describe these new keyworking roles, such as navigators.
The Council for Disabled Children (CDC), commissioned by Health Education England (HEE), scoped relevant existing and developing keyworker roles to consider what works, what are the challenges and how a new offer may work. Building on this work and with further consultation, the CDC produced guidance on keyworking functions and competencies. This enabled recruitment from a wide range of professional backgrounds to build keyworking services. These services are hosted within health, local authority or voluntary community sector organisations.
Initially, keyworker support has been provided to children and young people with a learning disability and/or who are autistic who are inpatients in, or at risk of being admitted to, a mental health hospital. Some areas have already extended this offer to young people up to the age of 25. From 2023/24, it is expected that all ICSs will offer their keyworking services to young people up to the age of 25.
Keyworkers are making sure that these children, young people and families get the right support at the right time. They are making sure that local systems are responsive to fully meeting the young people’s needs in a joined-up way and that whenever it is possible to provide care and treatment in the community with the right support, this becomes the norm.
Keyworkers work with children and young people with the most complex needs and their families and carers to make sure families are fully involved in their plans, feel listened to and informed, plans are personalised, and they have the support they need at the right time, in a co-ordinated way. Keyworking should help families experience a reduction in stress and uncertainty, an increase in stability and in not feeling they have to fight to be heard.
Working together with young people, parent carers and other stakeholders
The keyworking model was developed through extensive consultation with young people, parent carers and other stakeholders.
Watch this video, where forums, local authorities, health providers and commissioners share their experiences of working together and how it helped them to improve services.
Working with family carers, including the National Network of Parent Carer Forums (NNPCF) and Contact, NHS England defined the scope and outcomes for the new community keyworking services in a framework of what each must deliver in terms of outcomes and practical help. This says that children, young people and families should
- feel safe and happy
- feel listened to and informed
- feel involved in their plans, care and support
- experience a reduction in stress and uncertainty and an increase in stability
All ICS areas worked in partnership with stakeholders, families and children and young people to consider strategic oversight, infrastructure, planning and operational considerations crucial to establishing their keyworking service successfully. This continues to ensure effective on-going oversight and governance of the new services.
Critically keyworking services are also working closely across partner agencies to ensure that the service they deliver means children, young people and their families get the right support at the right time to achieve the outcomes they need.
Sharing and learning from each other
Keyworking services from all ICS areas can share good practice and learn from each other through the community of practice linked to the NHS Futures Platform (this platform requires a login).
An external organisation has been appointed to evaluate the impact of introducing keyworking. This will involve listening to the families, children and young people who experience keyworking and understand the impact it has had on their lives.
Core training has been developed for everyone appointed to a keyworking team. This reflects the need for the new community teams to understand the needs and challenges of many children and families they will be working with, how they are likely to feel and may have become disengaged or seen as hard to reach.
The training covers the key topics which were identified through our work with young people, family carers and other stakeholders. The training covers what is needed for people working across health, education, and care systems to make sure co-ordinated and highly personalised packages of support are developed. It will help to keep children and young people with a learning disability and/or who are autistic who are at risk of being admitted to hospital, to stay at home and get the personalised support they need.
The training for keyworkers is available through the e-learning for health platform. Further training about legal frameworks and safeguarding has also been commissioned and is available for keyworkers.
This extract from the Working in partnership with people and communities guidance explains how leadership and investment are essential to enabling children and young people and family voices in developing and maintaining keyworking services
Black Country Healthcare NHS Foundation Trust worked with children, young people and families from the outset to design its keyworker service. The parents, carers and young people with lived experience knew what they needed and the impact it would make. Co-production was at the heart of the approach from day one.
A steering group was co-chaired by a young expert by experience. Young people were helped by Dudley Voices for Choice to take part with pre-meetings and debriefs; resources and papers were written in plain English, and support was provided for the emotional nature of the work. They worked on all stages of the pilot, including the bid for funding, communications and job descriptions for keyworkers.
A peer support model was also developed alongside as a step down from the key worker model. The approach is being evaluated by the Challenging Behaviour Foundation. Feedback shows the positive impact keyworkers are having on young people, their families and the wider health and care network – for example there has been a significant reduction in Tier 4 hospital admissions.
The following case stories demonstrate:
- how keyworking is helping to improve outcomes for children and young people and their families
- how local systems are working together to make sure that children and families get the right support at the right time
- good practice in the development of their services.