Evaluating the impact of the keyworking programme for children and young people with a learning disability and/or autism

NHS England invested in a national keyworking programme to give every child or young person with a learning disability and/or autism, with the most complex needs, a named Keyworker.

NHS Arden & GEM was commissioned to develop an evaluation framework and assess the impact of the keyworking programme in 15 early adopter sites. Over two years, stakeholders were interviewed, case studies compiled and activity data analysed to provide an understanding of the programme outcomes to inform future commissioning decisions.

Partnership working with the Council for Disabled Children (CDC) – sector experts in children and young people’s participation and engagement – ensured that the voices of children, young people and parent carers were at the forefront of the evaluation.

The challenge

Children and young people with a learning disability and/or who are autistic, with the most complex needs, often experience a fragmented health and care system which is difficult to access and navigate. The ‘These are our children’ report (2017) by Dame Christine Lenehan recognised this and recommended that each child and their family should have a named Keyworker to support them in navigating the system.

The NHS Long Term Plan included a commitment to put Keyworkers in place by 2023/24. To achieve this commitment, NHS England invested in a national keyworking programme, to be implemented in three waves. The first wave included 13 pilot sites and the second wave 15 early adopters. An evaluation of the early adopter areas (17 service providers) was needed to understand the outcomes and to inform future rollout and funding decisions.

Our approach

A multidisciplinary team was established by Arden & GEM and CDC. Arden & GEM brought experience from evaluating other national programmes and knowledge of both qualitative and quantitative methods. While CDC brought expertise in understanding and engaging with children, young people and their families including adapting engagement methods to communication needs.

With oversight provided by a national multidisciplinary steering group, the team designed and conducted a robust mixed methods evaluation. The purpose of the evaluation was to examine whether the keyworking programme was meeting its objectives of:

• Ensuring that children, young people and families get the right support at the right time
• Supporting children, young people and families to feel listened to, safe, happy and stable, and experience less stress and anxiety
• Reducing the risk of unnecessary or unplanned admission to mental health hospitals
• Reducing the length of stay and risk of readmission for inpatients.

Confirming the logic model
The programme’s theory of change was described in a logic model. The logic model was refined, building on earlier work, to create the evaluation framework with stakeholders, and agreed as reflecting the intentions of the programme over the short, medium and longer term. It informed the approach taken to the evaluation, design of data collection tools and data analyses.

Interviewing stakeholders
Semi-structured interviews were planned and conducted with stakeholders to test the components within the logic model. This included asking:

• 21 children and young people for their views, experiences and feelings about keyworking
• 22 parent carers for their views and experiences about the impact of keyworking
• 22 Keyworkers for their views on the role, training, case management and stakeholders
• 16 system stakeholders for their views on interacting with the keyworking function.

Compiling case studies
Seven case studies explored in greater depth the complexity of the system and how children, young people their parent carers experience this journey. This exploration was achieved through repeat interviews, with the results then triangulated by evaluators.

Collecting and analysing data
In addition to qualitative data collection, two validated outcome measures were chosen by evaluators, in consultation with young people and parent carers, to understand the impact on them during the time they were allocated a Keyworker.

Activity data was not consistently collected across services or reported nationally. To address this, evaluators created a bespoke dataset to capture community-based activity over a 15 month period. Once relevant governance arrangements were put in place for participating sites, 871 records for children and young people were included in this dataset.

The outcomes

The evaluation was completed within the timescales and scope agreed. Ten key recommendations were made to increase the positive impact of the keyworking programme. As well as a final evaluation report, the team also produced a summary which was presented to the steering group and National Network of Keyworking Leads in September 2024.

The evaluation found that Keyworkers are valued by children, young people, parent carers and stakeholders. The team also found evidence that:

• Personal goals had been achieved by children and young people
• Quality of life had increased for a small number of parent carers
• Risk de-escalated in the first six months of Keyworker support.

The CSU team was commissioned to build upon the evaluation by supporting the development of minimum standards for keyworking services and a self-assessment tool aimed at systems. Together, these resources can help reduce inpatient numbers, avoid admissions and achieve increases in children and young people being stepped down. This will ensure families continue to receive a more integrated response with greater confidence in the service.