A high proportion of children and young people will experience health conditions that require a wide range of rehabilitation services before they reach adulthood.

What is the health problem in south-east England?

There is a significant gap in the availability of rehabilitation services for children in south-east England, and across the UK, meaning that many children cannot access the care they need. This gap has not been measured in terms of the impact on children and society over the short- or long-term. 

Sammy Randall, who is the Clinical Lead Allied Health Professional (AHP) for the Tony Hudgell Rehabilitation Programme, says:

Our experience shows wide variation in what children receive within and across boroughs and regions, regardless of need. This research focuses on children with long-term conditions and complex needs. These children and young people need to access high-quality rehabilitation closer to home, that it is needs-led, personalised and universal for all, regardless of where they live

Sammy Randall, Clinical Lead AHP for the Tony Hudgell Rehabilitation Programme

What are rehabilitation and habilitation services?

'Rehabilitation’ or ‘habilitation' refers to the services that support a child or young person with an illness or complex disability to live well and participate as independently as possible in home, school and community life. The services that support a child or young person can be broad and varied, and encompass a diversity of need. Depending on need, the approach could focus on prevention, health promotion, adaptation or maintenance of skills. 

Examples of rehabilitation and habilitation services include:

  • Early intervention guidance to help a parent to settle and feed their premature baby

  • Supporting a school to embed classroom strategies and adapt their environment, so that a child on the autistic spectrum can access learning and the curriculum, and engage with their peers

  • Enabling a child with a physical disability to move around using equipment or other aids so that they can access all areas of their school environment

The difference between rehabilitation and habilitation:

Rehabilitation and habilitation needs overlap and co-exist. They can occur together, or independently of one another, at different stages across the lifespan.

  • ‘Rehabilitation’ services are commonly associated with recovery, from illness, injury or disability. They help children and young people to re-learn and restore skills and return to a previous state of health and functioning.
  • ‘Habilitation’ includes, but is not limited to, restoration and recovery. It aims to equip children with the developmental skills that they need to participate to the best of their ability (partially or fully) at home, school and in the wider community.

This programme of work not only focuses on restoration and recovery. It is also about helping children and families to live well with the condition and the needs that they have. The focus is on enabling children and young people to stay at home and live in the community for as long as possible, despite illness or complex disability

Sammy Randall, Clinical Lead AHP for the Tony Hudgell Rehabilitation Programme

Aim of this research

The aim of this research project is to identify the access and provision of rehabilitation services for children with complex needs across south-east England, focusing on south London, Kent, Surrey and Sussex. 

How will it be carried out

The research will be carried out over two phases. The first phase will aim to understand what rehabilitation services are being provided, where there are examples of good practice, and where there is unmet need. As part of this initial research phase, the researchers will:

  • Analyse existing data sets across the region
  • Collate information on the lived experience of children, young people and families
  • Engage with service providers and commissioners to understand what resources are available
  • Identify services provided and map the workforce
  • Gather examples of good practice

The researchers will develop a synthesis of the current state of rehabilitation services across the region, examples of good practice, and priorities for improving equity of access to quality services from the perspective of service users, providers and commissioners. This first phase is expected to complete in January 2024 and will inform the second phase of the research, the development of a proposed model of rehabilitation, delivered at Integrated Care System (ICS) level.

Our collaborators

The researchers are working with the South Thames Paediatric Network, the Institute of Women’s and Children’s Health, King’s College London, the Evelina London Children’s Hospital, and with children’s acute, and community and specialist services across south London, Kent, Surrey and Sussex. This includes allied health professionals, clinical staff and managers, patients and families.

Support from the Tony Hudgell Foundation

This project is funded by the Evelina London Charity and the Tony Hudgell Foundation. Tony Hudgell (pictured below) is a 7 year-old boy and an award-winning fundraiser, who endured life-changing injuries at six weeks old. His lived experience and the breadth of healthcare needs he has, is an illustration of the importance of timely access to rehabilitation and habilitation, to help children and young people live the best life possible.

Read more about Tony Hudgell’s mission and fundraising activities.