SPACE Pilot
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Background
SPACE CYP (Social Prescribing And Community rEsources for Children and Young People) - otherwise known as the ‘SPACE Pilot’ - is a partnership project between Ways to Wellness and the Great North Children’s Hospital.
More than half of families with a child with complex healthcare needs, such as those arising from neurodevelopmental impairments and conditions, have financial difficulties; nearly half express unmet non-medical service needs, and a third express difficulty accessing non-medical services (Kuo D.Z. et al, 2011). The SPACE Pilot explores social prescribing for children with complex chronic conditions - integrating the hospital and community settings.
This is the first project of its kind. The majority of social prescribing services are based in primary care and focus on adults. This project explores how social prescribing approaches can be adapted to support children and their families, when they are accessing hospital services.
We offer non-medical support to complement the work of clinicians in the Great North Children’s Hospital. We support the whole family, helping them to feel more confident to manage their own health and wellbeing. Our link workers focus on “what matters to you”, so action planning and goal setting is guided by the child and their family. Where appropriate, we link families to support and services in the community that help the family to achieve their goals.
SPACE Pilot link workers can support families in a number of ways, including:
Getting involved in community groups and activities
Accessing emotional and practical support, including specialist services
Arranging assistance with school/education
Signposting to advice about benefits and grants
Identifying appropriate support groups
Making lifestyle choices
Help with gaining confidence
Getting more active
Help with healthy eating and cooking
Help developing positive relationships.
Support is provided for up to six months.
2. Who We Help
The service is for people who fit the following eligibility criteria:
✅ GNCH inpatients and day patients
✅ Aged 0-15 years old
✅ With a long term complex medical condition (Eligible children will have multiple healthcare professionals involved in their long term follow up)
✅ Living in the Newcastle/Gateshead/North Tyneside/Northumberland area (signposting can be offered to those living further afield).
We also support the families of eligible children, including siblings who have additional unmet non-medical needs.
Who is not eligible?
✅ Children considered too medically unwell for Link Worker referral to be appropriate (e.g. in PICU)
✅Currently going through active social services investigation e.g. Section 47
✅Acute severe mental health presentation requiring e.g. CRISIS team or other acute psychiatric support
✅ Children who are receiving similar support from a different organisation, e.g. The Teenage Cancer Trust.
If you would like to learn more about the project or refer a patient, please email nuth.spacepilot@nhs.net.
If you are unsure about eligibility, please get in touch. Even if a child is not eligible we may be able to offer advice around other support services.
3. Impact
This set of videos tell some of the stories from the professionals and clients we have worked with.
This video explains the project from the perspective of some of the professionals that have been involved.
This video explains the project from the perspective of one of the families that we've helped.
This video explains the project from the perspective of one of the families that we've helped.
This video explains the project from the perspective of one of the voluntary sector organisations that we've worked with.
4. Evaluation and Evidence
The first phase of the pilot was completed in February 2024. Phase 2 is now underway, and will run to March 2025.
Phase 1: Project Evaluation
Project monitoring and evaluation was undertaken throughout phase one of the project, to help us better understand the impact we were having.
The support we provided
Wellbeing Improvements
A key part of our evaluation was our use of the Support Star™ from Triangle, which is a validated tool for assessing the needs of children and young people facing serious illness. Support Star data was available from 18 families at the final time point and these scores were compared with the same families at baseline. There was a mean increase in total scores of 3.94 (median increase 4 points).
As well as the Support Star™ we used the following questionnaires to assess and monitor outcomes:
Quality of life (EQ-5D for adults; CHU-9D for children including proxy version)
Warwick-Edinburgh Mental Wellbeing Scale (parents)
Three questions to gauge financial strain on the family
Exploring social prescribing for children and young people in community and hospital settings
We were also part of a project looking at social prescribing for children and young people in community and hospital settings. The project was funded by NIHR Applied Research Collaboration North East and North Cumbria. The research was led by Newcastle University, and aimed to identify the components of effective social prescribing for children and young people. The results are currently being written up.
Our objectives were to:
Obtain in-depth understanding of social prescribing for children and young people through a mixed methods evaluation
Identify and disseminate practical recommendations for optimal social prescribing service provision
Understand how policy can support wider adoption of social prescribing for children and your people.
Research papers will be shared here as they are published:
Gordon K, Gordon L, Basu AP. Social prescribing for children and young people with neurodisability and their families initiated in a hospital setting: a systematic review. BMJ Open 2023;13(12):e078097.
5. Partners and Funders
Delivery of the project is funded by The Great North Children’s Hospital Foundation (part of the Newcastle Hospitals Charity) and Ways to Wellness.
Evaluation of phase one of the project was part-funded by the National Institute for Health Research (NIHR) Applied Research Collaboration North East and North Cumbria (NIHR200173). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
6. Patient Information
If you are eligible for the project and you would like to join it, please speak to the clinician at the Great North Children’s Hospital who is supporting you. If appropriate, they can then refer you to the project.
7. Testimonials
Kathryn, parent and SPACE pilot client
“Lauren’s helped us with a lot….things that probably we wouldn’t even think about either…..you’ll have a conversation, and the good thing is you can tell that you’re being listened to because they’ll pick up on stuff I’m not even asking for and go ‘well actually this might help.’”
SPACE Pilot client
“It opened my eyes to what is actually out there. It’s given me a bit more confidence that in the future when things come up that I know there is stuff that I can turn to.”
Paediatric Rheumatologist, Great North Children’s Hospital
