We met with a group of 12 parents of secondary school students with Down syndrome in Hertfordshire.

What did we learn?

What factors influence secondary school enrolment for children with Down syndrome?

• Parents conducted personal research and sought input from other parents and the local council.

• Some parents chose based on whether the secondary school had a sixth form attached.

• Parents chose schools based on available activities and the cohort of students their children would have as peers.

• Location was a major factor in choice.

What were children’s experiences with mainstream secondary school?

• Some parents tried mainstream secondary school, but they found their child was socially isolated, so moved to special school.

• Some parents tried mainstream school, but they found the SENCO at the school tailored all resources to children with autism.

• Some parents who enrolled their children in mainstream school were encouraged by the headteacher and SENCO to move their child to a special school.

What went well about special school?

• Social relationships,

• Specialist teaching,

• Small classes,

• Compassionate teaching staff,

• Children enjoy school,

• Children can learn at their own pace, and

• Wide range of curricula offered.

• What didn’t go well about special school?

• Some parents felt their children failed to make academic progress in special secondary school.

• One family would have liked to send their child to a nearer special school, but because it was across the county line, the local authority would not allow it. The school the local authority allowed was twice the distance away and required a 90-minute car ride each way.

Some parents had concerns about the teaching quality:

• The quality of provision often depended on the individual teacher, rather than the school itself.

• Some teachers would not get along well with certain pupils.

• Some staff did not have specialist training.

• Parents felt teaching staff were unsupported to meet their children’s needs.

• Some teachers failed to consult children’s EHCPs.

• Some teachers failed to target teaching to children’s needs.

• There was a lack of speech and language therapy.

• Children did not receive one-to-one support.

• Parents felt that teaching assistants did all the teaching, rather than the teachers.

• Some schools put children who had different learning styles in the same room, which led to problems. For example, children with sensitive hearing or cochlear implants spent significant time alone in the hallway because the other children in the classroom were so loud.

Some parents had concerns about school administration:

• Schools failed to communicate with families.

• Schools lacked extracurricular activities.

• Some parents had to persistently call schools or even take the school to court to get them to grant their child a placement in a school.

• Some special sixth forms and colleges do not provide full-time, five-day per week education, so parents must find other activities for their children on two or more days each week.

• Parents felt the facilities of special schools were not maintained as well as mainstream schools.

What was the experience of getting an EHCP?

• Some parents reported having to pay hundreds of pounds and going to tribunal to get an appropriate EHCP.

• Once financial resources were made available, the money wasn’t set aside for their child, instead it was absorbed by the school.

• Parents who used the wrong vocabulary or weren’t intimately familiar with national and local laws were dismissed by the local authority.

• Sometimes getting a diagnosis of autism, in addition to Down syndrome, gave a child access to more resources.

What was transportation to school like?

• Some parents reported long rides (1.5 hours each way) in a taxi or a bus.

• Some children were bullied by their escort during transport.

How did schooling influence the health of adolescents with Down syndrome?

• Some children experienced anxiety, sleep apnoea, eczema and hair-pulling during times of stress.

Public engagement at the New Scientist Live Weekend, with a highly diverse audience, interacting with approximately 150–200 members of the public over four days, including school children. Led by Laura Horsfall from IHI-UCL who showcased ECHILD work on school lockdowns during the COVID-19 pandemic and children’s mental health. The sessions presented a case study based on Dr Ruth Blackburn’s research paper “COVID-19-related school closures and patterns of hospital admissions with stress-related presentations in secondary school-aged adolescents: weekly time series”.

In this online session, the NIHR Children and Families PRU (CPRU) parent panel gave their insight into the factors that facilitate and impede access to mental health support for adolescents. They also offered some ideas on what else we should consider in our research on this topic.

What did we learn?

·       Barriers stem from health and educational services, but can be compounded by family circumstances and pressures from their wider community

·       Key factors that can lead to differences in access to support among different populations include:

1. the school the young person attends

2. the background and attitudes of teachers and health professionals

3. feeling judged or misunderstood by professionals

4. fear (by families) of being reported to social services

·       The impact of these numerous barriers is that some young people cannot seek help for mental health difficulties through formal pathways

·       The presence of trusted adults (such as a family member, mentor or teacher) and trusted third sector organisations in the local community can enable young people to seek support

What else should we consider in our research?

·       Early life risk factors such as the mental health of parents

·       Additional groups of marginalised young people such as those in alternative provision

·       Characteristics of professionals including their ethnic background and gender

·       Characteristics of mental health services such as whether they are run by the third sector

We met twice with the young persons group facilitated by the Young Lives vs Cancer charity. The first session took place in April 2025 where 8 young people attended. The second meeting took place in July 2025 where 7 young people attended.

The aim of the first session was to introduce everyone and hear about what research priorities are important for the lives of young people. We briefly introduced the study entitled Education and longer-term health outcomes for childhood cancer survivors. Based on session 1, we focused our research on key educational outcome time-points. This lead to the aim of session 2 to explain the ECHILD linked education and health data and to get input into our research plans.

From the two sessions, we learnt:

•            Depending on stage of education for the young person, return to education was challenging due to the system viewing their treatment period as coming to an end and expecting them to continue with education without much support.  

•            Support was dependent on teachers and individuals, rather than standard practice in how to support someone returning to education post cancer diagnosis and treatment.

•            The young people inputted into our analysis plan.