Communication and information sharing

Communication and information sharing

Regular two-way communication between the school and the young person’s parents - as well as the young person themselves - is central to ensuring the young person gets the support they need to be safe and included.

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

The school should discuss information sharing arrangements with the young person and their parents. These arrangements, for example, might include how staff members, volunteers and other pupils might be informed about the young person’s condition, and should be recorded on the young person's Individual Healthcare Plan (IHP). 

Parents will need to be confident that their child is well supported and treated equally to their peers. Schools will also need regular updates from parents on changes in the child’s condition which might affect them at school.

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 the condition can leave them feeling a lack of control.

Having a child with epilepsy can have a significant impact on parents’ working patterns. Parents may feel they need to be ‘close by’ or ‘on call’, for example, in case their child has a seizure. This can have a negative impact on household income, adding to the parents’ stress and anxiety, and restricting the leisure activities of the whole family. These additional stresses need to be considered when communicating with the family.

Young Epilepsy have a helpline for further information and support.  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.  Call: 01342 831342  Text: 07860 023789

The young person

The young person’s views should be sought and taken into consideration when arranging support at school. Schools should create a supportive environment where the young person feels able to share with staff how their condition is affecting them (e.g. if they 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. Ensuring that an up-to-date IHP is shared with staff will alleviate these frustrations. Other helpful tools such as a ‘communication passport’ for the young person to carry may also help.


Parents have invaluable insights into their child’s condition and how it affects them. Schools will benefit from cultivating positive relationships with parents through effective, ongoing two-way communication. This will be vital to providing the right support for the young person.

Ongoing communication between parents and the school is essential as epilepsy is a fluctuating condition. This might include information on seizure patterns, changes in behaviour or other factors such as changes in medication. Information from school can be fed back to the young person’s healthcare team via the family. This may help inform treatment considerations.

Schools may find it useful to have a communication book which goes home, where both staff and parents can provide information or ask questions. Schools might also consider having a key person who the parents can contact via email or phone.


Whilst an individual such as the SENCO (Special Educational Needs Co-ordinator) or inclusion leader may be responsible for overseeing the young person’s support at school, all staff have a role to play. Information sharing and consistent implementation of support strategies are vital for the young person’s safety and inclusion.

The young person's IHP 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 done sensitively and in line with the school’s data protection and safeguarding processes.

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.

Healthcare professionals

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 needs of the young person, ensure that the relevant information is included in the IHP and 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 their 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 Clinical Commissioning Group (CCG) 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.

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Guide for schools

Young Epilepsy helpline: email / call 01342 831342



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