UCL researchers receive funding to prepare a bid for a full multi-million-pound hub

The project development phase, funded by the National Institute for Health and Care Research (NIHR) and the UK Research and Innovation Engineering and Physical Sciences Research Council (EPSRC), will take 18 months and will focus on a comprehensive plan for the full SPROCKET hub together with children, young people, and families. 

Children with complex health needs and their families often need to access several services, from their GP to specialist hospital care, to physiotherapy, specialist dental care, speech and language therapists, social care, special educational needs, respite care and so on. 

The process of accessing these multiple services can often place a heavy burden on families, particularly those from deprived communities, families for whom English is a second language, families on insecure income or families with less support such as single parents, those without family nearby or those without transport.

Project co-applicant and parent of a son with complex health needs Meaghan Kall explains: “Parenting is difficult at the best of times, so parenting a child with complex health needs adds extra layers of challenges on top. These challenges are often invisible to the outside world which is isolating and scary. Life can be turned upside down by lengthy diagnosis odysseys and the stress of navigating multiple different services. 

“We rearrange our lives around appointments, drop everything when they go into hospital, spend hours advocating for our child with professionals, and in the evenings we catch up on endless paperwork. It can take a toll on the whole family’s mental health, physical health, relationships and family dynamics. With so much to deal with, we need a system which enables our families thrive, rather than set us up to fail.”

SPROCKET aims to streamline and improve the complex system of existing, often fragmented, services making them work more effectively together and easier to access and navigate for children, young people, and families. SPROCKET partners include Mencap, WellChild, The Mighty Creatives, Great Ormond Street Hospital for Children, UCL Partners, and the North Central London Integrated Care Board.

The project’s co-principal investigator Professor Christina Pagel (UCL Mathematics / UCL Clinical Operational Research Unit) says: “Often services are run by different organisations, from the local authority, social care, community, and hospital care to charities. The bureaucracy can change suddenly too: e.g., at different ages, as medical needs change or if you move house. 

“We are excited to work with children, young people, families, and service providers to develop a hub focused on making the whole system work better for children and young people with complex health needs.”

Co-principal investigator Professor Monica Lakhanpaul (UCL Great Ormond Street Institute of Child Health) comments: “Children and families living with complex needs often encounter many challenges whilst engaging with services that aim to support them. The most underserved are also often the most unheard. 

“We look forward to ensuring that those whose voices need to be heard will be at the centre of directing and guiding our diverse team of experts to develop our hub proposal that is truly and meaningfully child and family centred”.

If approved, the full SPROCKET hub will operate for five years from 2025.

The mission of the National Institute for Health and Care Research (NIHR) is to improve the health and wealth of the nation through research by:

• Funding high quality, timely research that benefits the NHS, public health and social care;
• Investing in world-class expertise, facilities and a skilled delivery workforce to translate discoveries into improved treatments and services;
• Partnering with patients, service users, carers and communities, improving the relevance, quality and impact of our research;
• Attracting, training and supporting the best researchers to tackle complex health and social care challenges;
• Collaborating with other public funders, charities and industry to help shape a cohesive and globally competitive research system;
• Funding applied global health research and training to meet the needs of the poorest people in low and middle income countries.

SPROCKET is jointly funded by the NIHR Health and Social Care Delivery Research (HSDR) programme (Project ID: NIHR156988) and EPSRC. The views expressed are those of the researchers and not necessarily those of the NIHR or the Department of Health and Social Care. 

NIHR is funded by the Department of Health and Social Care. Its work in low and middle income countries is principally funded through UK Aid from the UK government.

EPSRC is the main funding body for engineering and physical sciences research in the UK. Its diverse portfolio ranges from digital technologies to clean energy, manufacturing to mathematics, advanced materials to chemistry.
 
EPSRC invests in world-leading research and skills to advance knowledge and deliver a sustainable, resilient and prosperous UK. It supports new ideas and transformative technologies which are the foundations of innovations that improve the economy, environment and society. In partnership and co-investing with industry, it works to deliver both national and global priorities.

Links

• SPROCKET website  
• NIHR website 
• EPSRC website
• Easy read version of the article
• Professor Christina Pagel’s academic profile  
• Professor Monica Lakhanpaul’s academic profile  
• UCL Mathematics  
• UCL Clinical Operational Research Unit  
• UCL Great Ormond Street Institute of Child Health  

Image

• Co-applicant Meaghan Kall and her son Luther, who has ATRX syndrome. Credit: Meaghan Kall.

Media contact

Ingrida Bertasiute
i.bertasiute [at] ucl.ac.uk