Communication & information sharing

Who should be involved in communication and information sharing? 

Communication and information sharing should involve: 

• The young person with epilepsy
• Parents, carers and families of the young person
• School staff
• Healthcare professionals
• Designated Medical/Clinical Officer
• Other pupils

The young person with epilepsy 

You should seek the young person’s views and take them into account when arranging support at the school. It’s important that you create a supportive environment in the school where the young person feels able to share with staff how their condition is affecting them. For example, they may feel as though they are about to have a seizure. 

One of the frustrations faced by young people with epilepsy is needing to tell their ‘story’ repeatedly. You can alleviate these frustrations by making sure that the young person’s individual healthcare plan is up to date and has been shared with school staff. Other helpful tools, such as a ‘communication passport’ for the young person to carry, may also help. 

Parents, carers and families 

Your school will benefit from cultivating positive relationships with parents and carers through effective and ongoing two-way communication. This is vital to providing the young person with the right support because epilepsy is a changing condition. 

Parents and carers will need to be confident that their child is well supported and treated equally to their peers. They have invaluable insights into their child’s condition and how it affects them.

Schools will need regular updates from parents or carers on any changes in the child’s condition that might affect them at school. 

Shared information might include: 

• Seizure patterns 
• Changes in behaviour 
• Changes in anti-seizure medication

The school can also communicate information to the young person’s healthcare team via their family. This may help inform their ongoing treatment. You may also find it useful to have a communication book that goes back and forth between the school and the family, allowing both staff and parents or carers to provide information and ask questions. 

You might also consider having a key person on staff whom the parents can contact by email, text or phone. 

Things to keep in mind 

There are a number of things it’s good to keep in mind when communicating with the family of a young person with epilepsy. 

When a young person and their family receive a diagnosis of epilepsy, they may go through periods of stress, denial, sadness, grief, anger and even relief at being given a correct diagnosis. Families often feel alone and experience high levels of anxiety. The unpredictable nature of epilepsy can leave them feeling a lack of control. Having a child with epilepsy can have a significant impact on parents’ or carers’ working patterns. 

They may, for example, feel they need to be ‘close by’ or ‘on call’ in case their child has a seizure. 

This can have a negative impact on household income, adding to the stress and anxiety, and restricting leisure activities for the whole family. 

School staff 

An individual such as a special educational needs co-ordinator (SENCO), inclusion leader or other role may be responsible for overseeing the young person’s support at school. But it’s important to remember that all school staff have a role to play.

Information sharing and consistently implementing support strategies are vital for the young person’s safety and inclusion. The young person's Individual Healthcare Plan should be shared with all staff who work with the young person, including supply staff, those running extra-curricular activities and staff on school trips. 

Any information about a young person’s medical condition must be handled sensitively and in line with the school’s data-protection and safeguarding processes. 

Healthcare professionals 

Schools should involve healthcare professionals, such as school nurses and epilepsy specialist nurses, where possible. These professionals may be able to provide the school with information, advice and support. 

Discover the who's who of paediatric epilepsy healthcare

Epilepsy specialist nurse 

Young people with epilepsy may have an epilepsy specialist nurse who supports them. Many epilepsy specialist nurses are happy to meet with school staff to: 

• Discuss the young person’s needs 
• Make sure that their individual healthcare plan includes all relevant information 
• Deliver emergency medication training

School nurse 

School nurses are part of the public health nursing team and are usually linked to a number of schools in their area. They work across education and health, providing a link between school, home and the community. 

They work with the family and the school to enable the young person to make the most of their education. They support young people with specific medical needs and can provide advice and relevant training for school staff to manage those needs. 

Designated Medical/Clinical Officer

Each local area in England should have a Designated Medical/Clinical Officer (DMO/DCO). Their role is to support the Integrated Care Board (ICB) in meeting its legal responsibilities for children and young people with special educational needs and disabilities.

The DMO/DCO is a point of contact for schools to access local healthcare partners. Part of the DMO/DCO’s role is to assist schools with their duties to support pupils with medical conditions. The DMO would not routinely be involved in assessments or planning for individuals, but would be responsible for ensuring that assessment, planning and health support is carried out.

Find out more about UK legal frameworks, guidance and support systems

Other pupils 

Explaining to the young person’s friends about their epilepsy can help them feel more confident about spending time together. Agree with the young person and their family how other pupils should be made aware of the young person’s condition. Find out more about raising awareness of epilepsy among pupils with our epilepsy resources for schools here.