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’.
Initially, keyworker support will be 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. Keyworker support will then be extended to the most vulnerable children with a learning disability and/or who are autistic, including people who face multiple vulnerabilities such as looked after and adopted children, and children and young people in transition between services.’
Keyworkers will make sure that these children, young people and families get the right support at the right time. They will make 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.
A keyworker will 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 and an increase in stability.
Working together with young people, parent carers and other stakeholders
The community 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 the family carer co-production group, including the National Network of Parent Carer Forums (NNPCF) and Contact, the children and young people’s team defined the scope and outcomes and what mattered to families and young people from their direct experiences. Together we developed the outcomes keyworking should deliver in practical terms for children, young people and their families.
What families said mattered has been written into the framework for what Keyworkers must deliver. They said 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
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 the keyworking functions and competencies for pilot sites.
Money from the NHS Long Term Plan was given to each of the seven NHS England regions. Regions asked for local areas to come forward with a proposal to pilot this new function. After a decision-making process, involving the NNPCF regional representatives and other families and young people, pilot areas were appointed in each of the regions for 2020/21 and early adopters were appointed for 2021/22.
We have now launched keyworking in the remaining 16 areas of England. These areas are known collectively as Wave 3. This means all areas of England now have or are in the process of implementing the community keyworking model as set out in the NHS Long Term Plan.
As a consequence of the pandemic the number of pilots was increased from seven to thirteen, to start mid-year, with revised success metrics. The pilot areas are listed below:
- Bedford, Luton and Milton Keynes
- Black Country
- Cornwall and Isles of Scilly
- Coventry and Warwickshire
- Greater Manchester
- Lancashire and South Cumbria
- North Central London
- North West London
- South Yorkshire
- West Yorkshire
Pilots have established keyworking teams to deliver the described functions. The description of keyworking functions and competencies enabled recruitment from a wide range of professional backgrounds to build pilot keyworking teams. Teams are hosted within health, local authority or voluntary community sector organisations and will be working with children and young people up to 18 years until 23/24 when this will extend up to 25 years old.
Early adopter areas
The early adopter areas for 2021/22 have now been confirmed and are below.
- Birmingham and Solihull
- Bristol, North Somerset and South Gloucestershire
- Cambridge and Peterborough
- Cheshire and Mersey
- Hampshire and Isle of White
- Humber Coast and Vale
- Kent and Medway
- Leicester, Leicestershire and Rutland
- Norfolk and Waveney
- North Cumbria and the North East
- South East London
- Staffordshire and Stoke on Trent
Wave 3 of keyworker service development
Following on from the pilot and early adopter phases of the keyworker implementation programme the remaining 16 areas of the country nowhave funding and are mobilising to introduce keyworking services during 22/23.
Using learning from the pilot sites the remaining areas are being urged to work 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.
Local areas are being asked to work closely across partner agencies to ensure that the service they develop delivers the keyworking functions and ensures children, young people and their families get the right support at the right time to achieve the outcomes they need.
Wave three areas are:
- Bath, North East Somerset, Swindon and Wiltshire
- Hereford and Worcestershire
- North East London
- Shropshire, Telford and Wrekin
- South West London
Sharing and learning from each other
To make sure that pilots, early adopters and wave 3 areas are sharing what is working for them and learning from each other a community of practice has been set up linked to the NHS Futures Platform.
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 understanding the impact it has had on their lives.
HEE is supporting the delivery of this programme by developing core training for everyone appointed to a keyworking role.
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 was launched on the e-learning for health platform in September 2021.
Further training about legal frameworks and safeguarding has also been commissioned for keyworkers.
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
Success and learning from pilot sites
Working with young people to develop keyworking in the Black Country
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. Keyworkers make sure that these children, young people and families get the right support at the right time. They make sure that local systems are responsive to fully meeting the young people’s needs in a joined up way.
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 key workers.
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 for young people, their families and the wider health and care network – for example there has been a significant reduction in Tier 4 hospital admissions.