We would like to thank the families and staff who took the time to participate in our research. We would also like to thank the Study Steering Committee, our Partnership Schools, our Parent Advisory Group and our local collaborators, principal investigators and research nurses for their contributions. We would also like to acknowledge the contribution of Dr Kate Khair, consultant nurse, for her contributions to the analysis of children’s data.
Study Steering Committee members
Kath Evans (chairperson).
Janet Cobb.
Peter Fleming.
Margaret Fletcher.
Michelle Johnson.
Andrea White.
Lorna Wales.
Partnership schools
Richard Cloudelsey School, Islington, London.
The Bridge School, Islington London.
Contributions of authors
Kate Oulton (https://orcid.org/0000-0002-5778-3849) (Consultant Nurse, Senior Research Fellow – Learning Disabilities) was the chief investigator and led on the design of the study, with contributions from Faith Gibson (https://orcid.org/0000-0002-8125-4584) (Professor of Children’s Cancer Care), Jo Wray (https://orcid.org/0000-0002-4769-1211) (Associate Professor, Health Psychology), Lucinda Carr (https://orcid.org/0000-0001-9238-108X) (Consultant Neurologist), Irene Tuffrey-Wijne (https://orcid.org/0000-0002-7288-9529) (Professor of Intellectual Disability and Palliative Care), Angela Hassiotis (https://orcid.org/0000-0002-9800-3909) (Professor of Psychiatry of Intellectual Disability), Carey Jewitt (https://orcid.org/0000-0002-2971-984X) (Professor of Learning and Technology) and Sam Kerry (Expert Parent).
Charlotte Kenten (https://orcid.org/0000-0001-7012-7347) (Research Fellow) was the project manager and collected data along with Jessica Russell (https://orcid.org/0000-0003-3194-412X) (Research Associate). Both had previous experience of working with people with learning disabilities and of undertaking research, with Charlotte Kenten having completed a PhD (Doctor of Philosophy) and Jessica Russell a master’s degree in anthropology.
Data analysis was undertaken primarily by the core team (Kate Oulton, Charlotte Kenten, Jessica Russell, Jo Wray and Faith Gibson) with contributions from the executive team [Sam Kerry, Lucinda Carr, Angela Hassiotis, Carey Jewitt, Irene Tuffrey-Wijne, Mark Whiting (https://orcid.org/0000-0002-4056-6784) (WellChild Professor of Community Children’s Nursing) and Paula Kelly (https://orcid.org/0000-0002-0581-5474) (Senior Research Fellow, Palliative Care)] as required.
Dr Kate Oulton led on the writing of the report with Jo Wray, Charlotte Kenten and Faith Gibson.
Jessica Russell led on patient and public involvement with Faith Gibson and Mark Whiting.
All authors reviewed and approved the final report.
Publications
Oulton K, Wray J, Carr L, Hassiotis A, Jewitt C, Kerry S, Tuffrey-Wijne I, Gibson F. Pay More Attention: a national mixed methods study to identify the barriers and facilitators to ensuring equal access to high-quality hospital care and services for children and young people with and without learning disabilities and their families. BMJ Open 2016;6:e012333.
Oulton K, Gibson F, Carr L, Hassiotis A, Jewitt C, Kenten C, Russell J, et al. Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study. BMC Health Serv Res 2018;18:203.
Kenten C, Wray J, Gibson F, Russell J, Tuffrey-Wijne I, Oulton K. To flag or not to flag: identification of children and young people with learning disabilities in English hospitals. J Appl Res Intellectual Dis 2019;32:1176–83.
Oulton K, Wray J, Hassiotis A, Kenten C, Russell J, Tuffrey-Wijne, et al. Learning disability nurse provision in children’s hospitals: hospital staff perceptions of whether it makes a difference. BMC Pediatrics 2019;19:192.
Data-sharing statement
All data requests should be submitted to the corresponding author for consideration. Access to available anonymised data may be granted following review.
Patient data
This work uses data provided by patients and collected by the NHS as part of their care and support. Using patient data is vital to improve health and care for everyone. There is huge potential to make better use of information from people’s patient records, to understand more about disease, develop new treatments, monitor safety, and plan NHS services. Patient data should be kept safe and secure, to protect everyone’s privacy, and it’s important that there are safeguards to make sure that it is stored and used responsibly. Everyone should be able to find out about how patient data are used. #datasaveslives You can find out more about the background to this citation here: https://understandingpatientdata.org.uk/data-citation.
Disclaimers
This report presents independent research funded by the National Institute for Health and Care Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care.