Epilepsy treatment and care
This information is for carers of people with epilepsy and a learning disability

Epilepsy medicines
For most people epilepsy medicine is the best and often only option for controlling seizures. For many people, being on the right dose of the right epilepsy medicine or medicines can mean their seizures stop completely.

It can be difficult or upsetting for some people with a learning disability to swallow tablets. There are usually a variety of forms of the medicines, such as liquids and granules, available. So it’s worth getting the one that is most manageable to help the person take their medicine exactly as prescribed.

For someone who is likely to have trouble remembering to take their epilepsy medicine, there are a variety of reminder devices available. For more information on medicine reminders see the Disabled Living Foundation website.

Website: livingmadeeasy.org.uk

There are small differences between versions of epilepsy medicine which can affect the way the medicine works. If you notice a change in seizures following a version change it is important to tell your doctor or pharmacist. Some people may need to stay on the same version of their epilepsy medicine.

For everyone with epilepsy the aim is to get the best possible seizure control with as few side-effects as possible. For a person with a learning disability it’s especially important that seizure control isn’t the only thing the doctor considers when prescribing epilepsy medicine. They should be helping the person reach the best quality of life possible for them.

Possible seizure triggers
Knowing the possible seizure triggers for the person you look after, can help to limit the number of seizures they have. It can also mean that the dose of their epilepsy medicine isn’t increased unnecessarily. These are the things people say trigger seizures:

Not taking epilepsy medicine as prescribed
Feeling tired
Not getting enough sleep
Stress
Alcohol
Flashing or flickering lights
Menstruation (periods)
Missing meals
Fever can also make it more likely that someone will have a seizure.

Changes in any other medicines they take, especially stopping sedating medicines, can also trigger seizures.

Side-effects of epilepsy medicine
As a carer you are likely to notice changes in emotional and physical health and behaviour of the person you are looking after. This information may help with what to look out for. And what you notice will be important to share with the doctor.

A person with a severe learning disability is more likely to have side-effects than someone with a milder learning disability
Small side-effects may be missed by a doctor who doesn’t know the person you look after very well. They may think that a problem the person has with understanding, co-ordination or behaviour may be because of the learning disability, when it could be a side-effect of an epilepsy medicine
People with epilepsy and a learning disability may well have side-effects that are different from the general population
Side-effects could explain someone’s reluctance to take epilepsy medicine
Side-effects could result in behaviour problems
Having too much of an epilepsy medicine could result in behaviour problems
Taking a number of epilepsy medicines can often result in significant side-effects
Side-effects could reduce the person’s ability to understand things
A number of the older epilepsy medicines can cause osteoporosis. If the person you care for is taking one of the older medicines you may want to ask the GP to give them a bone density test. If necessary the doctor may then give a particular medicine or supplement for the condition.

Epilepsy Action has more information about osteoporosis.

Interactions
Always check with the doctor or pharmacist before giving someone over-the-counter medicines. Some epilepsy medicines will interact with these as well as prescribed medicines.

Other ways of treating epilepsy
For some people who are still having seizures despite trying a number of epilepsy medicines, epilepsy surgery may be an option. The assessment for surgery is complex but it should be offered where it is believed epilepsy is coming from one part of the brain. Even so, not everyone will be suitable for surgery. However when a person with a learning disability is suitable for surgery the results can be very good.

If surgery isn’t a treatment option, the doctor may discuss the possibility of vagus nerve stimulation (VNS) or the ketogenic diet.

VNS is a treatment for epilepsy where a small device is implanted under the skin below the left collar bone. This device, similar to a pace-maker, is called a generator. The generator is connected to a thin wire, which stimulates the vagus nerve in the person’s neck at regular times throughout the day. This sends impulses to the brain, which helps to prevent electrical activity that causes seizures.

There are 2 modified ketogenic diets. These are the Modified Atkins diet (MAD) and the low glycemic index treatment (LGIT) diet. The MAD involves restricting carbohydrates and encouraging fat. Protein is not restricted. On the LGIT diet carbohydrates and protein are both restricted and fat is encouraged.

These 2 modified diets are less strict than the ketogenic diet and weighing of food is not needed. The MAD is increasingly being chosen for children.

They are sometimes used to try and help people whose seizures cannot be reduced or stopped with epilepsy medicine or other treatments.

Epilepsy Action has more information about epilepsy medicines, surgery, VNS and the ketogenic diet.

Seizure diaries
Keeping a seizure diary is a good way of having a record of someone’s health day by day. It’s also an efficient way of showing a neurologist possible connections between changes in someone’s seizure control, general health, dose changes and side-effects.

Epilepsy Action has seizure diaries.

You might also want to look at Myhealthguide: myhealthguideapp.com

First aid
Epilepsy Action has information on first aid, including what to do if someone is in a wheelchair.

Care plans
Everyone with epilepsy should have a care plan. This is especially important if the person may need emergency treatment for their seizures. The plan should be drawn up by a medical professional, the person the care plan is about and their carers.

Epilepsy Action has care plans. These are not in Easy Read but you could use one alongside an Easy Read healthcare passport.

Website: ekhuft.nhs.uk/patients-and-visitors/about-us/people-with-learning-disabilities/my-healthcare-passport

Emergency treatment for seizures that last a long time
Many people have seizures that last for less than 5 minutes and stop without any treatment. But some people have seizures that last too long. These are known as status epilepticus and need treating urgently. This is to try and stop them before they cause long-term damage. The sooner the seizure is treated the easier it will be to get it to stop.

By the time a seizure is lasting for 30 minutes or more, it is much more difficult to stop. If a tonic-clonic or cluster of tonic-clonic seizures last longer than 30 minutes, this can cause damage to the brain, or even death.

What type of seizures turn into status epilepticus?
Any type of seizure can become status epilepticus.

Tonic-clonic (convulsive) status epilepticus
During a long convulsive tonic-clonic seizure, the body struggles to circulate oxygen. When this happens, the brain doesn’t get enough oxygen. Over a long period, this can lead to brain damage and death.

Non-convulsive status epilepticus
Some people with epilepsy, particularly people with learning disabilities or an epilepsy syndrome, have a different type of status epilepticus. They may just appear to be vacant. Or they might have some minor twitches in their face or rolling of their eyes. These can be symptoms of non-convulsive status epilepticus. The only clues to this will be changes in their brainwave patterns that can be seen on an electroencephalogram (EEG). It’s important that you are aware of this, as it can last for weeks, if not treated. If you think this may be happening for the person you care for, you may want to speak to your consultant who can arrange for them to have an EEG in hospital. If this process would be too slow, you may want to take the person you care for to A and E.

Rectal diazepam and buccal midazolam are both used as an emergency treatment. Buccal midazolam has the advantage of not causing the person concerned embarrassment. The issue of consent to emergency treatment can be a challenging one for the person involved and their carer. The NHS website has some helpful information on definitions of consent and what to do if that is difficult to get.

Website: nhs.uk/conditions/consent-to-treatment

Epilepsy Action has more information on emergency treatment for seizures that last a long time.

In hospital
The NHS website has a range of useful guidance about getting the person you look after the best care and treatment when they are in hospital.

Website: nhs.uk/nhs-services/hospitals/going-into-hospital/

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

Source Epilepsy Action

Employment
What’s the issue?
Figures from the Office of National Statistics show that in 2018 just 29.7% (nearly 1 in 3) of people with epilepsy living in the UK were employed. This is not because people with epilepsy are unable to work. There are very few jobs someone with epilepsy cannot do, depending on how their epilepsy affects their daily life. Many people with epilepsy can carry out a job with slight adjustments.

Despite this, there are many people with epilepsy who are unable to find a job. Epilepsy Action asked the Institute of Employment Studies (IES) to research this area. This would help us understand why people with epilepsy are struggling to find jobs. Finding the reasons why people are struggling will also help us to address these issues.

The IES research found that one of the biggest barriers to employment was a lack of understanding of epilepsy. Many employers were unaware that not everyone with epilepsy has tonic-clonic seizures. They also not aware of the different ways that epilepsy can affect different people or that many people’s seizures can be controlled with medication. They also didn’t know that not everyone’s seizures are triggered by flashing lights. Employers also worried about the impact seeing a colleague having a seizure could have on other members of staff.

The government has committed to increasing the number of disabled people in work. The number of disabled people in work has risen by 930,000 (31%) in the last 3 years. The number of disabled people who are out of work, however, remained roughly the same at around 3.7 million. Programmes designed to help disabled people into work are not meeting the current demand. Since 2011-12, DWP spending on employment support for disabled people has fallen in real terms by £50m.

What we are doing
Epilepsy Action has already taken steps to support people with epilepsy looking for work. The charity offers a range of advice and information materials about epilepsy and work. We also regularly train employers about epilepsy and the adjustments that can be made for employees with epilepsy.

Plans for other resources, including online tools to help employers support people with epilepsy in the workplace, are being developed. Epilepsy Action also has the ‘Epilepsy and you’ online self-management tool. This was designed to help people live better with epilepsy and become an expert in their own condition. The IES research stated that self-management tools are a key way people with epilepsy can improve their chances of finding and staying in a job.

There are a number of government programmes aimed at helping disabled people to find a job. However, these do not always work. Together with other charities, we regularly meet with the

Department of Work and Pensions. We highlight problems with the government’s employment support programmes and suggest solutions to improve what they provide.

It is clear, however, that more needs to be done. We will continue working with MPs, charities and others to push the government to provide more support for people with epilepsy to find, and stay in a job.

The research from IES found that people with a higher knowledge of epilepsy had a more positive perception of someone with epilepsy as an employee. Improving knowledge and understanding of the condition should help improve the employment chances of people with epilepsy. We will therefore continue working with employers to improve their understanding of epilepsy, through our awareness training.

How you can be involved
We would be interested to hear from you if have had any problems with your employer, or in finding a job and staying in work, due to epilepsy.

We would also like to hear of your experience of trying to access employment support through government schemes such as Access to Work or Specialist Employability Support.

Please get in touch on 0113 210 8866, or email campaigns@epilepsy.org.uk

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Source Epilepsy Action

Cost-of-living with epilepsy
Employment
Only 42% of working-age people with epilepsy are currently in employment. This is among the lowest employment rates for disabled people in the UK. Research by the Trade Union Congress (TUC) has also highlighted that people with epilepsy in work are paid on average 11.8% less than non-disabled workers. This means that not only are people with epilepsy less likely to have a paid job, but when they do, they earn less than their non-disabled peers.

Welfare
Many people with epilepsy have struggled to successfully apply for Personal Independence Payments (PIP). The current PIP assessment process is not working for people with epilepsy. The process does not properly assess the impact epilepsy has on an individual’s daily life. The assessment is not able to capture and reflect the nature of epilepsy. Too many people with epilepsy are not successful in their initial assessment for PIP and have to go through the appeals system to get the support they should be entitled to.

And while people on Universal Credit received an extra £20 per week during the pandemic, people on disability benefits such as PIP received no such help. This is despite research showing that extra costs faced by disabled people add up to £583 a month on average.

Cost-of-living
The combination of people with epilepsy struggling to find employment, and the problems they face trying to get sufficient support through the welfare system, means that they are particularly vulnerable to the impact of the cost-of-living crisis.

Inflation is now at 9% and is predicted to hit 10% later in the year, as energy bills rocket and food prices shoot up. This is on top of the extra costs that many disabled people already faced. However, despite this, benefit payments have only increased by 3.1%. Many people were already struggling but these factors will make their situations much worse.

What we are doing
In order to ensure that people with epilepsy aren’t disadvantaged by the cost-of-living crisis we are calling on the government make the following improvements:

Employment
Introduce mandatory disability employment and pay gap reporting for employers, including reporting on the employment gap for specific impairment groups
Introduce a duty on employers to produce targeted action plans identifying the steps they will take to address any gaps identified, including ensuring disabled workers with invisible impairments feel confident in completing workplace equality monitoring
Ensure there is more focused employment support for people with hidden and fluctuating conditions and better support for people with epilepsy from Jobcentre Plus Disability Employment Advisers. This should include ensuring that job coaches with training and understanding of epilepsy, and the employment barriers they face, are available to people with the condition
Reform the current Access to Work system to ensure that people with epilepsy get the support they need to find and stay in a job
Access to Work support should also be made available during the job search to help people find work, and ensure that support is in place for the start of employment
Welfare
Uprate disability benefits and Carer’s Allowance to rise in line with inflation
Increase the length of PIP awards to avoid frequent re-assessments. The DWP should also look to use information provided during previous assessments, which would allow assessors to make a paper-based decision, without the need for repeat assessments
People with epilepsy should be assessed by someone who has a proven understanding of the condition
Reform the activities and descriptors in the PIP assessment and Universal Credit Work Capability Assessment to properly capture the impact of living with a fluctuating and invisible condition like epilepsy
End of the use of informal observations as part of the assessment process
Cost-of-living
Provide targeted support to help disabled people with the rising cost of living
Ensure better access to the Warm Home Discount Scheme which currently excludes around 210,000 people on disability benefits from applying. Currently Disability Living Allowance, Personal Independence Payments and Attendance Allowance claimants will no longer benefit
Introduce social tariffs for disabled people so they pay no more than a supplier’s cheapest plan
Get involved
We are looking for MPs to support our work to ensure that these recommendations are implemented. We would like people to raise this issue with their MP.
Source Epilepsy Action

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