Young people's views on epilepsy care

We wanted to find out young people’s views on the transition from paediatric to adult epilepsy care, as well as how their care equipped them to be more involved in managing their condition. We heard from over 200 young people across the UK, ranging in age from 11 to 25.

When we asked about the transition process, we found that most young people moved from paediatric to adult epilepsy care at age 16, 17 or 18 (35% at age 16, 27% at age 18). The largest proportion of young people (40%) said they had no joint appointments with children’s and adults’ epilepsy services, however 27% had more than three joint appointments.

Paediatric care was amazing but there wasn’t a transition period. One day I was just handed off to a new service with no idea who I was seeing or what these people were like.

Nearly half the young people (45%) said their treatment or diagnosis changed when they moved to adults’ epilepsy services. Around 1 in 3 (32%) also said their experience of transitioning from children’s to adult epilepsy care had a negative impact on their mental health.

It wasn’t a successful transition, which caused a lot of anxiety and stress.

Most young people (72%) felt listened to by their epilepsy nurse in paediatric care, although this was slightly less in adult care (58%). More young people also said their epilepsy nurse explained things clearly (66 %), in comparison to their epilepsy doctor (60%).

As a child I was listened to, as an adult they try and tell me what to do.

In children’s epilepsy care, only 39% of young people said their doctor or nurse spent more time talking to them directly as they got older. Also, only 1 in 3 (29%) said they had more opportunities to speak with their paediatric epilepsy doctor or nurse on their own as they got older.

I have been able to speak privately about things with my doctor / nurse rather than have a parent present.

Only 1 in 2 young people (51%) said their epilepsy doctor or nurse helped them to understand and self-manage their epilepsy more as they got older. Nearly 1 in 3 young people (30%) said their paediatric epilepsy doctor or nurse didn’t speak to them about how epilepsy might impact on a range of life issues, including mental health, exams and driving.

I don’t think there is much support as I would like to talk to someone as I get upset as I am not the same as my friends.

Thank you to all the young people who shared their experiences. We’ll share the survey findings with epilepsy healthcare professionals and use the findings to develop more information and support for young people.

Read the survey results

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