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.
Working with the family carer coproduction 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 the Keyworkers need to 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 and NHS Improvement regions. Regions asked for local areas to come forward with a proposal to pilot this new role and 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 have now been appointed for 2021/22.
The keyworking pilot plans for 2020-21, drafted and presented before the start of the coronavirus pandemic, were revised in line with the restoration and recovery process. As a consequence the number of pilots was increased from seven to thirteen, to start mid-year, with revised success metrics. The description of keyworking functions and competencies has enabled recruitment from a wide range of professional backgrounds to build pilot keyworking teams. The pilot areas are in the table below. As indicated for two of the pilots the first phase of the pilot will focus on an agreed part of the area they cover, extending from April 2021.
Pilots are establishing keyworking teams to deliver the described functions. 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 or up to 25 years old but with flexibility during the transition period.
|Integrated Care System area||20/21 pilot phase footprint|
|Bedford Luton Milton Keynes|
|Cornwall and Isles of Scilly|
|Coventry and Warwickshire|
|Greater Manchester||Heywood, Middleton and Rochdale and Salford|
|Lancashire and South Cumbria|
|North Central London|
|North West London||Hammersmith and Fulham and Hounslow|
|South Yorkshire and Bassetlaw|
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
Sharing and learning from each other
To make sure that pilots and early adopters are sharing what is working for them and learning from each other a community of practice has been set up.
An external organisation is being appointed to evaluate and learn what works well where and to measure 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 will cover 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.
HEE has commissioned Pathways Associates, to co-develop the content of this bespoke training package. Work to develop this training and transform it into e-learning will take place throughout the spring. The training will be made available on the e-Learning for Healthcare platform during the summer.