We exist to improve the lives
of everyone affected by epilepsy

 

Living with epilepsy and a learning disability

These pages are for carers of people with epilepsy and a learning disability

Safety and risks

Safety

There are many different things to help a person with epilepsy and a learning disability stay safe. These include ways to avoid injury inside and outside the home, seizure alarms and helmets.

Epilepsy Action has information about safety and about daily living aids.

SUDEP

People with epilepsy and a learning disability are more likely to die early than other people. So it’s especially important, for you as a carer, to know about sudden unexpected death in epilepsy (SUDEP).

Here is the NICE guideline that underlines that: 1.16.3.7 Healthcare professionals should be aware of the higher risks of mortality for children, young people and adults with learning disabilities and epilepsy and discuss these with them, their families and/or carers.

The most important thing to know about SUDEP is how to reduce risks. One of the biggest causes of SUDEP is night time convulsive seizures. If the person you care for has these types of seizure make sure the doctor knows. Reducing the number of night time seizures is one of the ways to reduce the risk of SUDEP. If the person you look after is still having night time seizures you might also consider getting some sort of bed alarm or listening device so you know when the seizures are happening.

Epilepsy Action has information on bed alarms and SUDEP and how to reduce the risks. SUDEP Action has SUDEP information in Easy Read.

Website: sudep.org

Education

Schools now have a legal responsibility to support children with medical conditions. This includes making sure that:

  • Everyone is able to participate fully in the life of the school
  • The staff understand epilepsy and are able to support students with the condition
  • All students who need one, have an individual healthcare plan (IHP)

Epilepsy Action has information on the responsibilities of schools, an IHP template and information on support for children with special needs

Mencap, an organisation that supports people with learning disabilities, has a range of information on education.

Website: mencap.org.uk 

The equality laws

The person you are caring for is protected under the equality laws. You are also protected because you’re caring for someone covered by the equality laws.

If the person you are looking after is being refused access to a place or a service, you will need to check if the organisation has done an individual risk assessment. If they haven’t, they need to do one. And then if they do identify any actual risks, they will need to consider what reasonable adjustment they may be able to put in place to make it possible for the person to access the service. They can only refuse access if they cannot identify any possible reasonable adjustments.

Epilepsy Action has more information on the equality laws.

Social care

As a full time carer it’s not always easy to find the time or the energy to look for the information and resources you may need. Your Community Learning Disability Team could be a good first local point of support for you. Your local council should be able to tell you how to get in touch with them.

Below is a list of topics on the NHS website. It’s a good source of information on social care. We are sorry there isn’t enough space to print it all out here. But if you don’t have access to the internet your local library may be able to help.

Website: nhs.uk/conditions/social-care-and-support-guide

This information includes:

  • Getting the right social care for adults
  • Getting the right social care for children
  • Help with challenging behaviour
  • How to get adaptations and daily living aids in your home
  • Finding respite care
  • Finding the right accommodation
  • Finding residential care

Financial support

The NHS website is a good source of information on financial support for a carer of a person with a learning disability.

Website: nhs.uk/conditions/social-care-and-support-guide

This information includes:

  • Carers allowance
  • PIP
  • Direct payments
  • Personal health budgets
  • Continuing care

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
B010.06

Epilepsy Action would like to thank Dr Lance Watkins Consultant Psychiatrist, Neath Port Talbot Community Learning Disability Team for his contribution to this information.

He has no conflict of interest to declare.

This information has been produced under the terms of The Information Standard.

  • Updated November 2018
    To be reviewed November 2021

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