by Guest author Tim van Hasselt, University of Leicester
SNJ intro: For many parents, the challenges of caring for their children with SEND is made more complex because of co-morbidities. That is, they have one or more health conditions at the same time, for example, autism and ADHD, or Down syndrome and autism, and so on. Each condition has its own issues, and the interplay of one on another can bring additional difficulties. They can also bring multiple appointments, doctors, hospitals and medications. It’s an under-researched area, but one doctor is working to change that. Read our article today to find out more…
My name is Tim van Hasselt, I’m a paediatric doctor working in neonatal units in Leicester, and also a researcher into child health at the University of Leicester.
I’ve been invited to write for Special Needs Jungle to share our plans for a research project at the University of Leicester looking at children with more than one long-term condition (‘multiple long-term conditions’), and their health and education needs, using national data already collected from the NHS and from schools.
We would like to talk to families of children with multiple long-term conditions, many of whom have special educational needs, to find out what they think is important for research.
Multiple long-term conditions
With advances in medical science, we can provide treatments for more children, and more children are living with medical conditions who may not have survived in the past. For example, we provide care for smaller and smaller preterm babies in neonatal units.
Existing research studies suggest that between 2% and 10% of children have more than one long-term health condition, depending on which conditions are included and whether studies look at data from GP surgeries or hospitals.
Long-term conditions include health problems like asthma, constipation, or epilepsy, as well as conditions like autism, learning disabilities, or Down syndrome.
This is against a background of increasing numbers of children with registered special educational needs (SEN), which may be for varied and complex reasons that are not completely understood.
Impact on children and families
We have had one meeting with families so far whose children were cared for in neonatal units as babies. Some families of children who went on to have multiple long-term conditions told us they spend a lot of time taking their children to different appointments to see various specialists. Some parents give up work to be full-time carers, and children may need additional support in education, as well as time out of school when they are at hospital or clinics.
Families told us it can be challenging going between all the different services, and they feel like they have to be experts themselves.
The planned research study
We are approaching national research funders to ask for money to fund our five-year study. It will use national data from England and Wales, which is already collected by the NHS and schools. This data is anonymous, and we would not be able to identify any child or their families. It is also kept safe and only available to trained researchers through secure computers. Use of this data to benefit children and families has been approved by ethics committees.
We want to understand how events around the time of birth, such as health conditions in a mother’s pregnancy, the birth weight of the baby, and deprivation or poverty in the area the family lives in, could affect the chance of children developing multiple long-term conditions.
We then want to understand how children with multiple long-term conditions use healthcare such as A&E, GP, and hospital services, and look at their education including their attendance, achievements at exams, and SEN registration with schools, education health and care plans, and special school placement.
Finally, we want to use ‘machine learning’, or computer-assisted analysis of the healthcare data, to see if there are groups of similar children who use certain services (such seeing the asthma team, and ear nose and throat surgeons), where perhaps we could group different services together to offer families of these children a ‘one stop’ clinic rather than travelling to multiple different clinics all the time.
Family involvement in research
While we want to use existing data from the NHS and schools, it’s important to talk to families who have experience of looking after children with multiple long-term conditions and also young adults who grew up with multiple long-term conditions.
We want to make sure we plan our research to answer the right questions in the right way, but also we need to understand how to interpret the results of our study – what results are important, and what do they mean for children and families?
We would like to speak to more families, throughout our research, with a range of different backgrounds and experiences.
This usually involves one or more hour-long meetings with the research team and several families, usually online and in the evenings to make it easier for families in terms of school, work, and bedtimes. However, often we have children in the online meetings who have not gone to bed yet, which is fine!
If you would like to help with our study, please email me on tim.vanhasselt@leicester.ac.uk with a few short details about your experiences with long-term conditions in children, health and/or education. Your details will be stored securely, and we will contact you with more information.
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Also read:
- Research informs policy: Bringing the lives of people with profound learning disabilities into the academic space
- Cut neurodiversity assessment waiting lists in one easy step: Create more barriers to NHS referrals
- How will Ofsted’s inspection overhaul affect children with SEND? And why you need to respond to the consultation
- Inquiries and injustice: the SEND Inquiry hears the parental perspective
- Invest in early specialist therapy for all deaf children, teenager, Hope, tells the Government
- Big ideas belong to everyone: Education, rights and lifelong learning for people with learning disabilities
- As The Guardian prints our joint campaign’s open letter, it’s clear people with lived experience don’t want to lose SEND rights
- How do you ensure pathways to education, health, and social care support, meet both diagnosis and needs?
- Researching flexi-schooling: How beneficial is it for children with SEND?
- Oops, we did it again… The Government must now listen to more than 100,000 people who do not want to lose SEND rights
- Experts at Hand: When is an occupational therapist also a SEND expert?
- Could using AI to filter Government consultation responses lead to “algorithmic silencing” of neurodivergent voices?
- A council’s “improvement journey”? How determined SEND parents catalogued the trail of their LA’s unlawful behaviour
- Research: Social networks in special schools. Friendships, bullying and play
What kind of government is “bold” enough to scrap statutory EHCPs from vulnerable children?May 16, 2025
The SEND reforms in the Schools White Paper reveal rights given, and rights stripped awayFebruary 24, 2026
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- Big ideas belong to everyone: Education, rights and lifelong learning for people with learning disabilities - October 12, 2026
- As The Guardian prints our joint campaign’s open letter, it’s clear people with lived experience don’t want to lose SEND rights - October 9, 2026
- How do you ensure pathways to education, health, and social care support, meet both diagnosis and needs? - October 7, 2026
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