Resetting Services to Disabled Children v.1
Research type
Research Study
Full title
Recovery, Renewal and Reset of Services to Disabled Children
IRAS ID
300595
Contact name
Lindsay Pennington
Contact email
Sponsor organisation
Cumbria, Northumbria, Tyne and Wear NHS Foundation Trust
Duration of Study in the UK
1 years, 1 months, 31 days
Research summary
Summary of Research
Disabled children have complex health needs and they and their families depend on services coordinated across health, social care, and education. During COVID-19 non-essential services paused and then remodelled with services often provided online, but many families struggled to cope.
This study aims to learn from the changes made in response to the pandemic to show how services for disabled children could be remodelled in the ‘recovery’ of the NHS. We will also define minimum acceptable, effective core health service provision for future emergencies and lockdowns.
We will use information collected by the NHS and local authorities before and during COVID-19 in five different areas across England. We will examine whether changes in service use were the same for disabled children of different ages and health conditions, and how changes affected children's physical and mental health.
We will interview disabled children and parent-carers and professionals from health, education and social care about the services they received and provided. We will ask what worked well and for whom; what didn’t work so well, for whom and why; and the impacts on children's and families’ health and wellbeing.
We will identify characteristics of services that have worked well during COVID from the interviews and information collected by services. Then we will invite families and professionals from across England to rate how important these features are for services for disabled children. Finally, we will combine the results to make recommendations on how services should be provided to meet the needs of disabled children and their families in the present climate, and what would be a minimum acceptable service for times of emergency and lockdown.
We will share findings with families, policymakers and practitioners to ensure all learn lessons, improve outcomes and reduce the risks of children's health deteriorating.Summary of Results
This research aimed to establish which reconfigurations of services, practices and strategies for disabled children arising from COVID-19 worked well and should inform policy on system recovery and planning for future emergencies.We brought together the published research on the impacts of changes to services to disabled children worldwide during the pandemic. We interviewed disabled young people, parent carers, and health, education and social care professionals; in five very different areas of England to find out how local services changed during the pandemic and how children’s health and wellbeing was affected. In four of the areas, we examined the number of children’s contacts with health services before and during the pandemic.
Disabled children’s contacts with all health services reduced dramatically in the first lockdown. Admitted patient care, outpatient appointments and contacts with CAMHS recovered most quickly but contacts with community services and A&E visits remained low throughout the pandemic. Therapy services were the hardest hit community services and were still well below pre-pandemic levels in September 2021. Changes in service access were unequal. Children from Black or African, Mixed and Other groups were less likely to attend A&E than White children. Reductions in hospital and community services were greater for pre-school children. Children with autism spectrum disorder experienced less reduction in contacts with community services than children with other conditions. Children with cerebral palsy had fewer contacts with community services and more admissions to hospital during the pandemic than before.
The prolonged reductions in services had profound impacts on disabled children and their families. Young people, parent carers and professionals all described deteriorations in children’s physical and mental health and the health and wellbeing of parent carers who took on the role of nurse, therapist, educator with limited support.
Nineteen recommendations were agreed by parent carers, professionals and commissioners on how service changes should be made, how services should be delivered, and how changes should be communicated to families in future emergencies. Future emergencies such as pandemics are widely accepted to be inevitable. These recommendations can be adopted nationally and locally to reduce morbidity, and increase support for children and families in future emergencies. Local adoption into emergency plans should be a focus now, before future emergencies, so they can be implemented quickly when needed.
REC name
North West - Preston Research Ethics Committee
REC reference
21/NW/0267
Date of REC Opinion
23 Nov 2021
REC opinion
Further Information Favourable Opinion