Better futures for young lives with epilepsy and associated conditions

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Rules 4 Schools

Rules 4 Schools

Schools need to make sure that children with epilepsy have the support they need to be safe, included and achieve their potential.

Since 2014, all state schools in England have been legally required to have a policy on supporting children with medical conditions. This means that all children with epilepsy should have an individual healthcare plan (IHP) and school staff should be trained to meet their needs. Schools also need to take into account how a young person’s condition might affect their learning.

In 2017 we conducted a survey of young people with epilepsy, and their parents and carers, to find out whether they were getting support that met Government standards. The results, published in October 2017, showed that many young people were still receiving inadequate support.

We’re now relaunching our survey to see whether support for young people with epilepsy at school has changed. These results will help us provide up-to-date evidence to campaign for better support. Please take a few minutes to share your experiences (all responses will be anonymous):

survey button

Key findings from 2017's survey

  • Less than half the families responding to our survey (45%) said their school had a medical conditions policy
  •  1 in 3 young people with epilepsy still do not have an individual healthcare plan (IHP) at school (36%)
  •  For those IHPs that are in place for young people with epilepsy:
    - 1 in 6 do not include information on current medication/treatment (16%)
    - 1 in 9 do not include what to do in an emergency (11%)
    - 1 in 13 do not include what to do when a seizure happens (8%)
  •  2 out of 3 IHPs do not include how epilepsy might affect learning (67%)
  • Only half the families (51%) said that school staff had been trained to support a young person with epilepsy
  •  1 in 6 young people with epilepsy (18%) are excluded from activities at school

We want all children with epilepsy to get the support they need at school.

We are asking families to contact their local MP to make sure schools in their area have the right support in place.

Take action now

Young Epilepsy is calling for 4 things as part of our Rules 4 Schools campaign:

  1. Schools to ensure that all young people with epilepsy have an individual healthcare plan.
  2. Schools to ensure they have a policy on supporting pupils with medical conditions.
  3. A requirement on schools to publish medical conditions policies on their websites.
  4. School inspections to include a routine check for support for pupils with medical conditions.

The findings

Read the full report

See how Veriton are helping with this campaign

Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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