Aim

Our aim is to examine the organisation and delivery of services to identify whether children and young people with learning disability and their families receive equal access to high quality hospital care and what factors help or prevent this.

Background

Due to their complex and multiple needs, children and young people with learning disability are often labelled as ‘disabled’ or ‘technology-dependent’ or as having ‘special needs’, ‘a long-term condition’ or ‘complex health needs’. Because these terms are often used inter-changeably, the unique needs that arise because of their intellectual impairment are often overlooked. They have been described as an invisible population whose voice is rarely heard. We know that in adult hospitals, people with learning disability often do not receive the same quality of care as other people and there is evidence to show that they can experience abuse, discrimination and even death as a result. What we do not know is at what age people with learning disability start to experience such inequality.  We want to hear the voice of children and young people with long-term conditions, both with and without learning disabilities and compare how services are delivered to, and experienced by them.

The lay summary, scientific abstract and full study protocol can all be found here on the NIHR’s website.

Patient and Public Involvement (PPI)

The research team has consulted widely with families, staff and learning disability experts about the research questions, design, methods of data collection and dissemination strategy. One parent with more than 20 years experience of using multiple NHS hospitals for her children with learning disabilities is a co-applicant.

Parents of children with and without learning disabilities form the Parents Advisory Group. Two places on the Study Steering Committee are reserved for representatives of the Parents Advisory Group.

Children and young people with and without learning disabilities are advising us on a range of aspects of the study. They are helping us to find the best ways to understand the views of children and young people in hospital.

Dissemination

We will be reporting on different aspects of the study throughout the three year period. We will use a range of approaches to share the findings with all stakeholders, including using social media. An easy read summary report will be sent to all those who take part.