Innovation hub to improve support for children at critical life transitions

The SPROCKET Hub was awarded £6.2m funding by a UKRI Engineering and Physical Sciences Research Council (EPSRC) and National Institute for Health and Care Research (NIHR) partnership to redesign how health, education, social care, housing and transport services work together over the next 4.5 years. The hub focuses on transitions that families consistently identify as the most stressful and where support breaks down: starting school, moving between schools, and leaving hospital.

This work comes at a critical moment, as reforms to SEND systems in England bring renewed attention to improving support for children with special educational needs and disabilities.

SPROCKET stand for Systems and Process Redesign and Optimisation at Childhood Key Events and Transitions. Working with the NHS, education leaders, local councils and local and national, and placing the voices of children, young people and families at the centre, the hub will identify where systems break down and co‑design practical innovations that make support faster, fairer and easier to navigate.

Professor Monica Lakhanpaul (UCL Great Ormond Street Institute of Child Health and Consultant at Nottingham University NHS Trust), project co‑lead, said: “Children with complex needs face many challenges as they grow up. There can be delays or obstacles to getting the support they need, meaning their lives and the lives of their families can feel disjointed, disrupted and unfair.

“Times of transition, like starting or moving school or leaving hospital, are points where a child’s needs are more likely to be unmet for a period of time. This can lead to increased family stress and worse outcomes for the child. If children are living in poverty, this can make matters worse.

“This is why we need to develop a fairer and more responsive system of support for these children, that works across different public services like health, social care, education and housing.”

SPROCKET is an innovation hub combining systems science, engineering, data analysis and lived experience to redesign services in real time. The team will use approaches including soft systems methods, systems dynamics, simulation, epidemiology, health economics and educational psychology to identify which changes would have the biggest impact, before co‑developing and testing new solutions directly with families and professionals.

Professor Lakhanpaul added: “We have known for some time the system isn’t working for many of these families and their children. As a paediatrician I see this in my day-to-day practice. Parents feel frustrated and re-traumatised at having to repeat their story and fight for their children’s needs. Delays can mean children growing up without the support they need. For instance, a child may need a wheelchair, but by the time the family has done the assessment they might be too big for it. Or a family might wait for an education plan for six months or a year – a long time in a child’s life.

“There is a recognition that we need to do things differently. Our aim is to make it easier for professionals to give families what they need – to identify the fragile points in the system where things are more likely to go wrong and, together with children, families and professionals, to work together to strengthen them.”

Parent co‑investigator Meaghan Kall, who works in public health for the NHS, brings lived experience to the core team. Her son Luther, eight, has ATR-X syndrome. She said: “When we received the diagnosis, it was a huge shock. We not only had to come to terms with the fact that Luther’s life would be very different from what we had envisaged, but we were also thrown into a system we didn’t understand. There were appointments for occupational health, physiotherapy, speech and language therapy, feeding and seating, plus his many specialist doctors. We deal with wheelchair services, continence service, housing adaptation service, respite care service, school transport, and more. There is no road map and no guidebook. A lot of the parts of the system don’t talk to each other or link up very well.

“As a parent, you have to chase all the referrals, fight for benefits and the support he needs. It is a big emotional and logistical challenge. So many parts of the system are broken. It took us a year and a half to be approved for a place at a specialist school, which doesn’t make sense given how clear Luther’s needs are.

“I hope that this project, by looking at the puzzle as a whole rather than only pieces of it, can bring services together and streamline the process, making it easier for parents and children to navigate, leading ultimately to better outcomes for children.”

Over the next five years, SPROCKET will develop and test up to five innovations informed by systems mapping and creative engagement and workshops with children and young people, families, charities and service providers. These innovations will aim to reduce delays, improve coordination and make transitions smoother and more equitable.

To reach a wide audience, the team will share learning through comics, films, animations, infographics and interactive events, alongside national talks and policy engagement.

The project builds on 18 months of NIHR-funded work to understand families’ experiences and ensure children, siblings, parents and carers are fully embedded as partners.

SPROCKET is led by Professor Monica Lakhanpaul alongside Professor Christina Pagel, Professor Sonya Crowe and Professor Jenny Shand, spanning three UCL faculties (Population Health Sciences, Mathematical & Physical Sciences, and Brain Sciences) and involving researchers across five more (Bartlett, Brain Sciences, Social and Historical Sciences, Engineering, and the Institute of Education).

Partners include Great Ormond Street Hospital, the Global Disability Innovation Hub, UCL Partners, Henley Business School, the Mighty Creatives charity, SEND Power in Haringey, the North Central London Integrated Care Board and the boroughs of Barnet, Camden, Enfield, Haringey and Islington.

Links

• SPROCKET Hub
• Professor Monica Lakhanpaul’s academic profile
• Professor Christina Pagel’s academic profile
• Professor Sonya Crowe’s academic profile
• Professor Jenny Shand’s academic profile
• UCL Population Health Sciences
• UCL Mathematical & Physical Sciences
• UCL Brain Sciences

Image

• Credit: CC Animation Studio, funded by The Commonwealth Fund. 

Media contact

Mark Greaves

m.greaves [at] ucl.ac.uk

+44 (0)20 3108 9485