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Scheme to support North East children with neurodisability and their families shows positive impact and is set to be extended.

A pilot scheme that supports children with neurodisability and their families has been awarded funding from the NHS Charities Together Health Innovation Fund to continue and expand, following an evaluation funded by the NIHR ARC North East and North Cumbria that proved its positive impact.

The SPACE Pilot (which stands for Social Prescribing And Community Resources for Children and Young People) is a ‘social prescribing’ scheme delivered by charity Ways to Wellness and the Great North Children’s Hospital Foundation. Social prescribing uses ‘link workers’ to connect people to support, to help with non-medical issues that are affecting wellbeing.

The SPACE pilot scheme was offered to families with children being cared for at the Great North Children’s Hospital who have neurodisability such as cerebral palsy, and who can experience frequent hospital visits and lengthy stays.

The scheme was developed to help families who reported feeling overwhelmed after leaving hospital; with many describing having a lack of ‘headspace’ to search for relevant information and mental exhaustion from the effort of applying for support.

Link workers hosted by Ways to Wellness spent time with families whilst in hospital to understand the support they needed and help them to access it. This included help with things such as finances, practical issues, and mental wellbeing. The link workers continue to support families for six months after discharge.

Researchers funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) North East and North Cumbria (NENC) evaluated the impact of the programme using a mix of interviews and surveys, and by analysing data.

A total of 49 children and their families used the service, and 18 families were studied in detail.

The research found that families who had benefitted from the pilot felt more supported, less stressed, and better connected to helpful services when their child left hospital. They also felt more confident in being able to manage their often-complex circumstances.

It also showed that for every £1 spent delivering the programme, it created benefits to families to be worth £2.75 – almost trebling the investment.

Link worker support was also praised by healthcare professionals – who said it contributed to more family centred care, resulted in improved health outcomes for children and young people, and reduced pressures on healthcare systems.

Following the evaluation, the SPACE Pilot is now being extended at the Great North Children’s Hospital and widened to support other groups of medically complex children and their families.

The project has also secured a further grant of £200,000 from the NHS Charities Together Health Innovation Fund, which will be used to continue testing the approach over the next two to three years, with at least 140 more families set to benefit.

Lead researcher Dr Anna Basu, Clinical Senior Lecturer and Honorary Consultant Paediatric Neurologist at Newcastle University, said:

“Our study shows the real benefits of supporting children with neurodisability and their families through social prescribing – both emotionally and financially. Having link workers come into the hospital is a vital part of the scheme, as it makes the service more accessible for some families and allows support to start early.

“Starting this kind of 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 efficiency and reducing pressures on hospital staff.”

Ways to Wellness is a North East charity piloting and prototyping innovative healthcare interventions and new ways of working that empower individuals to improve their health, and tackle health inequalities.

Simon Bromhead, Head of Development at Ways to Wellness, said: “The SPACE Pilot was the first of its kind. Most social prescribing services are based in primary care and focus on adults. This project explored how social prescribing can be adapted to support children and their families when they are accessing hospital services.

“The evaluation shows this approach really works and has given us a strong foundation to build on. The evidence developed from this evaluation has been instrumental in helping us to secure extra funding from NHS Charities Together Health Innovation Fund to continue this work, which means we can support even more children and families in our region.”

Jon Goodwin, Head of Grants at NHS Charities Together, said:

“With limited resources at our disposal, our grant-making needs to be based on evidence and insight on what works the best for the patients, staff and communities of the NHS. The evaluation of the pilot gave us confidence to support the SPACE project in its further delivery and development and we are excited to see the huge difference that the project will make to children and young people across and beyond the North East region.”

More information

The findings from the evaluation were recently published in the BMC (BioMedical Central) Health Services Research Journal – 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

You can read a plain language summary of the research here – Supporting children with neurodisability and their families through social prescribing – ARC

The evaluation of the SPACE pilot was funded by the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC).

Read more about the SPACE pilot – SPACE Pilot — Ways to Wellness

Find out more about the Great North Children’s Hospital Foundation – Great North Children’s Hospital Foundation – Newcastle Hospitals Charity

About NHS Charities Together

NHS Charities Together is the national charity caring for the NHS, working with a network of NHS charities to provide extra support in every hospital, health board, ambulance, community, and mental health trust around the UK to help the health service go further for NHS staff, patients and communities.

To date, NHS Charities Together has allocated over £153 million to fund thousands of projects supporting NHS staff, patients and volunteers. These include counselling services, helplines, and other mental health support for NHS staff, plus training for emergency responders, research into long COVID, and specialist services and equipment. The charity has also funded over 325 community organisations to tackle health inequalities and prevent ill health in the community, helping to reduce the pressure on overstretched NHS services.

NHS charities have been there since the inception of the NHS, and with the current pressures on the health service being greater than ever before, the extra support it provides is even more crucial. NHS Charities Together will continue to help NHS charities go further, to increase their support for NHS staff, volunteers, patients, carers and families, so that everyone has access to the best health and care possible, no matter what.

Learn more – NHS Charities Together