Supporting children with neurodisability and their families through social prescribing
Quick-read summary
Neurodisability is an umbrella term for conditions associated with impairment involving
the nervous system and includes conditions such as cerebral palsy, epilepsy and feeding difficulties.
Children with a neurodisability are frequent users of the health service at all levels.
Some children with a neurodisability spend a lot of time in hospital. Their families often report feeling overwhelmed and struggle to find community support for their child and themselves. Support may be needed with finances, practical issues, and for mental wellbeing.
Social prescribing connects people to community services meeting their needs, often through a ‘link worker’. Social prescribing has helped many people, mostly adults, in the community.
This study describes a social prescribing programme for children with neurodisability and their families, which was set up in a children’s hospital in partnership with a healthcare innovation charity. The support continued beyond discharge home for six months.
Researchers evaluated the programme using a mix of interviews, surveys, and data analysis.
Families reported feeling more supported, less stressed, and better connected to helpful services.
A Social Return on Investment (SROI) analysis showed that for every £1 spent, the programme created benefits to families estimated to be worth £2.75. Families and hospital staff thought that other groups of children and families could also benefit from this service.
Who is this evidence useful for?
- Families of children with complex needs
- Healthcare professionals
- Commissioners
- Researchers
More detail about the work
Children with complex medical conditions including some forms of neurodisability have high service needs, frequent hospital visits, and limitations in daily activities, with substantial social, emotional and financial strain on the entire family.
Examples include children with cerebral palsy, epilepsy, and feeding difficulties.
Families report feeling overwhelmed, and struggle to find community support. Healthcare professionals report wanting to help but having limited time and knowledge of relevant community resources to be able to do so effectively.
Social prescribing connects people to community services meeting their needs, often through a ‘link worker’.
There has been little focus on providing social prescribing from within a hospital setting for children and their families.
Some children in hospitals are preparing for discharge after life-changing illness or injury. Providing social prescribing in hospitals would help these children and families to access community support quickly.
Research summary
A link worker service was set up for children with a neurodisability and their families at the Great North Children’s Hospital, working jointly with Ways to Wellness, a charity piloting innovative healthcare interventions and new ways of working that empower individuals to improve their health.
This was called the SPACE Pilot – read more here
The support continued for six months, beyond discharge from hospital. Link workers hosted by Ways to Wellness spent time with families to understand the support they needed and helped them access it. A total of 49 children and their families accessed the service, and 18 families were studied in detail.
The research team collected the following data:
- Information about needs and goals, and whether they were addressed through the service
- Interviews with families and healthcare professionals to understand their experiences of the service
- Surveys to measure wellbeing and quality of life
- Social Return On Investment (SROI) analysis: this method was used to measure the financial and social benefits of the programme compared to its costs.
What did the research find?
- Baseline quality of life and wellbeing averaged below that of the general population – ‘Baseline’ – means the initial measurement of health and wellbeing or needs
- Families reported having felt overwhelmed when trying to adjust to new ways of life before link worker intervention
- Link workers were highly effective at supporting families (only 6/151 goals unmet)
- Unmet need decreased by six months
- Link worker support was invaluable for making community services accessible
- Families felt more connected to their communities, and less isolated, with increased belief in their self-efficacy (ability to manage their circumstances)
- Families and healthcare professionals felt that the duration of support, and eligibility criteria, should be extended
- The cost of delivering the service for one year (49 families) was estimated at £74,736: benefits for the 18 families studied were estimated at a value of £205,861.
Why is this important?
This study shows the benefits of supporting children with neurodisability and their families through social prescribing. Having link workers come into the hospital makes the service more accessible for some families, and allows support to start early.
Initiating non-medical support for children with neurodisability and their families during their hospital admission could help reduce length of stay, reduce readmission rates, improve outcomes for patients and families, and allow specialist staff to redirect support to link workers, improving work efficiency.
The approach could be extended to other children and families, and to other hospitals, strengthening links with community services.
How were people/community groups/patients involved in this work?
A survey of 40 parents of children with neurodisability confirmed interest in the service and outlined key areas for support.
Consultation with clinical and hospital management staff, and with link workers, shaped plans for the service.
The Young Persons Advisory Group North-East (YPAGNE) considered what a successful service would look like.
A steering group including parents of children with neurodisability guided the project.
Recommendations for policy and practice
This pilot service and its evaluation demonstrate the feasibility and acceptability of a hospital in-reach social prescribing link worker service for children with neurodisability and their families.
The evaluation evidenced a high level of baseline unmet social needs and proof that families can be effectively supported to achieve mutually agreed goals.
What happens next?
The next steps in this work include broadening the service scope to support other groups of medically complex children and their families.
The research team have have received funding from the NHS Charities Together Health Innovation Fund to continue and expand the service at the Great North Children’s Hospital – through a funding bid with Ways to Wellness.
They are also working with the Children’s Hospital Alliance to streamline data collection from similar emerging services, including data about costs and benefits.
They are also looking to undertake a multi-site evaluation to demonstrate scaleability (this means – to increase its size and scope) and spread.
More about the service including some short videos can be found at waystowellness.org.uk/space-pilot
Read the full research paper: Hospital in-reach family-centred social prescribing pilot for children with neurodisability: mixed methods evaluation with social return on investment analysis | BMC Health Services Research | Full Text.
Read more about the systematic review that was also part of this work: Can social prescribing in a hospital setting support children with neurodisability, and their families? – ARC
Find out more
Please contact the lead researcher Dr Anna Basu at anna.basu@newcastle.ac.uk
How was this work funded?
The National Institute for Health and Care Research, (NIHR) Applied Research Collaboration (ARC) North East and North Cumbria funded the evaluation work.
The Great North Children’s Hospital Foundation Charity and Ways to Wellness funded the pilot delivery.
The research team
Laura Gordon; Megan Hastry; Angela Bate; Katie Gordon; Emily Greaves; Simoni Dimitriadou; Tim Rapley, Anna Basu
Thank you to Alicia Crunden, psychology placement student, for helping to prepare this evidence summary.