An estimated 3-4% of children in the UK are diagnosed as having a neurodisability.
Find out how this pioneering social prescription project – SPACE CYP Pilot (Social Prescribing And Community rEsources for Children and Young People) – helps to match families with the invaluable practical and emotional support they need in their new day-to-day lives.
Contents:
- Understanding neurodisability in children in the UK
- A system under pressure: the hidden burden on families
- What is social prescribing?
- What is the SPACE Pilot project?
- Changing the lives of families in the North East
- Looking to the future…
Understanding neurodisability in children in the UK
Neurodisability is an umbrella term that refers to a group of conditions associated with impairments of the brain or nervous system. It can include conditions such as cerebral palsy, autism, epilepsy, learning disability, and a range of rare genetic syndromes.
In the UK, neurodevelopmental conditions are the most common cause of disability in children, affecting an estimated 3-4% of the child population. These children often require ongoing, multidisciplinary care, and while the spectrum of needs is broad, what connects many of these families is the complexity and longevity of care required, often across health, education, and social care systems.
For many, accessing the right support at the right time can feel like an impossible task while navigating the family’s medical needs.
A system under pressure: the hidden burden on families
Despite the scale and complexity of need, families of young children with neurodisabilities frequently encounter fragmented services and limited support. More than half of families with a child with complex healthcare needs have financial difficulties, nearly half express unmet non-medical service needs, and a third express difficulty accessing non-medical services*.
Parents and carers often become the co-ordinators of care, managing multiple appointments, assessments, and agencies, and all of this on top of the emotional and physical demands of caregiving. The early years of life are especially critical, as timely intervention can make a lasting difference to a child’s development and wellbeing. Yet families often report long waits for assessments, unclear referral pathways, and a lack of holistic, family-focused care.
What is social prescribing?
Social prescribing is a personalised approach to health and wellbeing that connects people to non-clinical services and community-based support. Instead of a traditional prescription for medication, individuals might be referred to activities like gardening clubs, creative workshops, or exercise classes — depending on what matters most to them.
Often facilitated by a link worker, social prescribing recognises that health is shaped by a wide range of social, emotional, and practical factors. While the model has roots in addressing long-term conditions, loneliness, and mental health, it’s increasingly being used more broadly across the NHS to support individuals whose needs can’t be met by medical treatment alone.
Social prescribing has been shown to improve quality of life, reduce GP appointments, and help people feel more connected to their communities. For individuals facing complex or ongoing challenges—such as isolation, housing insecurity, or stress—the benefits can be transformative.
The majority of social prescribing services are based in primary care and focus on adults, leaving families of children with neurodisabilities with little support, and placing enormous strain on them – financially, emotionally, and socially. Many parents experience isolation, mental health challenges, and employment difficulties, all while trying to advocate for their child’s needs in overstretched systems. There is a growing recognition that more needs to be done to support these families — not just medically, but socially and emotionally too.
What is the SPACE Pilot project?
SPACE CYP (Social Prescribing And Community rEsources for Children and Young People) is a service at the Great North Children’s Hospital to support children with neurodisability or other medically complex conditions and their families with these complex, non-medical needs.
The SPACE Pilot is a partnership project between Ways to Wellness, the Great North Children's Hospital and Newcastle University, originally initiated by Dr Anna Basu at Newcastle University. In its first years, Newcastle Hospitals Charity funded the service, and NIHR ARC NENC funded the more recent evaluation. Since then, SPACE Pilot has received national funding from the NHS Charities Together Innovation Fund.
Working as a child neurologist and going around the wards and seeing children with neurodisability every day and their families, you see how many difficulties there are in everyday life. Difficulties with financial issues, transport, social, and emotional wellbeing.
Dr Anna Basu, Clinical Senior Lecturer (Newcastle University) and Honorary Consultant Paediatric Neurologist (Great North Children’s Hospital)
Clinicians raise awareness of the service to families. Referral is entirely voluntary, if families want support with unmet non-medical needs. Free support then takes the form of a specialist link worker from Ways to Wellness, who supports the family in a whole range of bespoke ways to improve their wellbeing, confidence, and quality of life.
We can do as little as offering to make phone calls for families, or send in actual referral forms, or as far as attending services with families for the first time, or over a number of weeks until they’re confident to attend that service alone.
Lauren Loader, SPACE Pilot Link Worker
Link workers focus on ‘what matters to you’, so action planning and goal setting is guided by the child and their family. Link workers assist families for around six to eight months, and this could include help getting involved in community groups and activities, signposting to advice about benefits and grants, arranging assistance with school and education, help with lifestyle choices, healthy eating, and cooking, or accessing further emotional and practical support.
Changing the lives of families in the North East
This project is the first of its kind and has shown great success for families in the North East.
The evaluation of the pilot service, published in BioMed Central Health Services Research and authored by Dr Anna Basu and others, found that for every £1 spent delivering the programme, it has created benefits worth £2.75.
Furthermore, the report demonstrated that parents and healthcare professionals found link worker support invaluable for making community services accessible. Families then felt more connected to their communities, and less isolated, with increased belief in their self-efficacy.
Of the 18 families supported by the service and evaluated in detail, many are keen to share the benefits of the project. Kathryn’s story highlights the range of support possible through Link Workers. After going into premature labour with her twins, Freya and Logan, the family spent 18 months in hospital, isolating them from social groups that might offer support.
The family’s Link Worker, Lauren, began with a relaxed, formal conversation with Kathryn, which then led to her attending Kathryn’s first parent-baby group with her.
To me that the best thing that anyone could’ve ever done, because, looking back, I might’ve found an excuse not to go. Lauren’s helped us with a lot. Anything from baby groups that cater to my twins as individual needs because they’re so different with their abilities and disabilities, right up to things that we can apply for, funding-wise. Just the things that probably we wouldn’t even think about.
Kathryn – SPACE Pilot service user
Further benefits are demonstrated in Michael, Tracyann, and Ava’s story. When Ava was confirmed to have the SCN2A gene – causing 50 to 100 seizures a day – the family were sent home feeling utterly overwhelmed with the diagnosis and realities of their new lives.
They were referred to the SPACE Pilot service, to support them with family needs as they learned to navigate home life with their new responsibilities and Ava’s 24-hour care.
I think the difference that it’s made for all of us is as a family, rather than just Ava. It’s made a massive impact on all of us. We have family time, regular groups, time away. It’s less stressful, which is very important, isn’t it?
Michael and Tracyann – SPACE Pilot service user
Looking to the future…
After being named one of six services in the country to receive a grant from NHS Charities Together’s Innovation Fund, SPACE Pilot is now being expanded.
We’re delighted that SPACE Pilot is one of six projects that have been awarded grants, in this case £200,000, to support it over the next three years. We know that sadly where someone is born can affect their long-term health, and this and other projects across the UK are aimed at tackling unfair health inequalities and giving every young person the support they need.
Jon Goodwin, Head of Grants at NHS Charities Together
The project has also been awarded a further grant towards the delivery and evaluation of the service from the Legal and General Health Equity fund. This will be held by Newcastle Hospitals Charity.
As the only recipient of the fund from the North East region, it’s hoped that the work will help at least 150 more families with non-medical support that will give them the confidence and space to focus on what matters to them. The initiative is just one of several currently operating in the North East and North Cumbria Integrated Care Board (NENC ICB) region to be hosted by Ways to Wellness.
If SPACE Pilot was widely available, I think it would be such an asset to the whole population that we support. It’s made such an impact, I know, for the families who’ve already been involved. And for me myself, as a physiotherapist, it certainly makes me feel like I’m delivering better quality and more compassionate care.
Jemma Bell - Children’s Physiotherapist
Furthermore, while SPACE Pilot is based at the Great North Children’s hospital, the team behind the project have developed a model that can be adopted by other hospitals and health services across the UK.
Hopes are that families will one day benefit everywhere, not just in the North East.
You might also like…
- read more about the SPACE Pilot project
- explore the in-depth report on the project: ‘Hospital in-reach family-centred social prescribing pilot for children with neurodisability: mixed methods evaluation with social return on investment analysis’
- read more about Legal & General's Health Equity Fund's £3m awarded to tackle inequalities across the UK, and the full awardee list
- discover more about the Great North Children’s Hospital
- explore the work done by Ways to Wellness
- read the press release on SPACE Pilot’s grant success: Six figures for hospital project taking a whole family approach
- find out more about SPACE Pilot creator, Dr Anna Basu, Honorary Consultant Paediatric Neurologist and Clinical Senior Lecturer at the Great North Children’s Hospital and Newcastle University
- watch the professionals and staff discuss the origins and aims of SPACE Pilot
- listen to Kathryn and Freya’s story as SPACE Pilot service users
- listen to Michael, Tracyann, and Ava’s story as SPACE Pilot service users
References:
* Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med. 2011;165:1020–6.
