Support for carers
Being a carer
Caring for someone can be a real joy. And it can be really demanding.
It can be hard to find your way around all of the different services on offer, and to look after your own wellbeing at the same time.
As a carer you should be listened to and involved in making decisions alongside the person you are caring for. You should also be offered a carer’s assessment.
Having a learning disability
People with a learning disability are all different. There will be differences between the experiences of people with mild, moderate, severe and profound learning disabilities, as well as many other differences that will be unique to each person.
People with a learning disability often have worse health than people without a learning disability. A number of barriers can stop people with a learning disability from getting good quality healthcare, such as:
• Not having the correct diagnosis, or not getting it soon enough
• Carers not feeling listened to
• Not adjusting treatment in response to the person’s needs, or changes in their health
• Different care providers not working together in a joined up way
The National Institute for Health and Care Excellence (NICE) say that people with learning disabilities should be on a learning disabilities register with their doctor. This helps doctors and healthcare staff to offer extra support.
As well as an annual review with their doctor to look at general health issues, they should also have an annual review of their epilepsy with an epilepsy specialist.
The link between epilepsy and learning disabilities
Out of every 100 people with a learning disability, around 22 also have epilepsy. This means epilepsy affects about one in five people with a learning disability.
The more severe the learning disability, the higher the possibility that the person will also have epilepsy.
A smaller number of people with Down’s syndrome have epilepsy (two out of every 100). But if someone with Down’s syndrome also has dementia, they are then much more likely to develop epilepsy.
It is often harder to support someone when they have two or more health conditions.
Epilepsy and learning disabilities
Safety and risks
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.
Doing a safety check
A safety check helps you decide whether something is safe for the person you care for. If there are risks, it helps you work out what could be done to make that activity safe enough for them to do.
1. Think about their seizures – what happens, how often they happen, specific triggers. Keep a seizure diary or download an app to help get any information about patterns or triggers. Knowing about triggers and patterns can offer some useful information about how to make an activity safe
2. Think about what the risks would be if they had a seizure
3. Make a plan to do things that reduce those risks
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).
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.
SUDEP Action has SUDEP information in Easy Read.
Schools 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.
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.
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.
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
A quick guide to epilepsy
What is epilepsy?
Epilepsy is a condition that affects the brain, causing repeated seizures. In the UK, there are around 630,000 people living with epilepsy.
Electrical activity is happening in our brain all the time. An epileptic seizure happens when there is a sudden burst of intense electrical activity in the brain. The epileptic activity causes a temporary disruption to the way the brain normally works, so the brain’s messages become mixed up. The brain is responsible for all the functions of the body. What happens during a seizure will depend on where in the brain the epileptic activity begins, and how widely and quickly it spreads.
Epilepsy can start at any age and there are many different types. Some types of epilepsy last for a limited time and the person eventually stops having seizures. But for many people epilepsy is a life-long condition.
Different seizure types and triggers
There are a lot of different seizure types. How a seizure affects someone with epilepsy depends on what area of the brain is involved.
Some people only have one type of seizure, whilst others have more than one type.
Knowing the possible seizure triggers for the person you look after can help to limit the number of seizures they have. It can also help with getting the dose of their epilepsy medicine right.
Keeping a seizure diary is a good way to try and find out what might trigger seizures.
Causes of epilepsy
There are many possible causes of epilepsy, but in over one third of all people with epilepsy, doctors don’t know the cause.
For people with a learning disability, the cause of their learning disability can also be the cause of their epilepsy.
As doctors understand the causes of learning disability better, it is becoming clear that certain genetic causes are linked with particular patterns of epilepsy. A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition.
A doctor can sometimes find it difficult to recognise when someone with a learning disability is having seizures. This is where your knowledge as a carer of the person will be valuable.
Here are some things to bear in mind:
• It is not always easy for doctors to find the right diagnosis, as there are a number of conditions that can cause symptoms similar to epilepsy
• Some behaviours that are related to a learning disability can look similar to seizures, for example absence seizures
• People with a learning disability might find it difficult to describe their symptoms
• A video recording of the person having a seizure can really help with accurate diagnosis
• A number of people with learning disabilities and epilepsy also have dissociative (non-epileptic) seizures
For some people with a learning disability, having an EEG or MRI may feel really difficult. You may want to discuss with the doctor or epilepsy nurse any ways they can suggest to help with this.
You can ask for information to be adapted so that the person you are caring for can understand and prepare for the tests. One example of this is Easy Read information.
Epilepsy treatment and care
People with epilepsy and a learning disability should be offered the same treatments for their epilepsy as everyone else. They should also:
• Have a review of their epilepsy treatment at least once a year
• Be offered a general health check every year (for adults and children 14 years old and over)
• Be given clear information about their epilepsy in a way they can understand, such as Easy Read (taking time to explain it to them as well)
• Have ‘reasonable adjustments’ so that they can use health services the same as everyone else, such as more time for appointments
• Be given support to make their own decisions where possible
All of the different professionals involved in the person’s care should try to work in a joined-up way. If the person you care for has more than one health condition, this can be hard to manage.
NICE have a document on this summarising these recommendations.
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. It can be helpful to take this care plan to doctors and hospital appointments, even if the appointment is not related to epilepsy.
This is because the doctors may have a question about the epilepsy treatment or seizures. It is a good idea to keep the care plan somewhere you can quickly find it, so that you can take it with you in an emergency.
Consent to treatment
Consent to treatment means a person must give permission before they receive any type of medical treatment, test or examination. Before someone can give their consent to treatment, they must be given all of the information about what the treatment involves, and have the capacity to understand the information given to them.
They should also be able to use the information to make an informed decision, without being influenced by other people such as doctors, friends or family.
The NHS website has some helpful information on consent to treatment and how capacity is assessed.
The main treatment for epilepsy is with epilepsy medicines. 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 for some people with a learning disability to swallow tablets. You can usually ask to have the medicine in a more manageable form, such as liquid or powder, 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.
There are small differences between versions, or brands, 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.
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.
• Some 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 other people
• Side effects could cause someone to be reluctant to take epilepsy medicine
• Side effects could result in behaviour problems
• Having too much of an epilepsy medicine could result in behaviour problems
• Taking more than one epilepsy medicine lead to more side effects
• Side effects could reduce the person’s ability to understand things
Epilepsy medicines and problems with bone health
People taking epilepsy medicines for a long time have an increased risk of osteoporosis. This is a condition that weakens bones, making them more likely to break. Your doctor may give the person you look after medication and vitamins to maintain the health of their bones. You can ask their epilepsy specialist to review their level of risk and discuss tests that are available.
Taking other medicines
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. This can make them less effective or causing unwanted side effects.
Other treatment options
Epilepsy surgery is a treatment option for some people with seizures that can’t be controlled by taking epilepsy medicines. The assessment for surgery is complex, but it should be offered where it is believed that the person is suitable, and the benefits of surgery outweigh the risks. The aim of brain surgery is to try to stop or reduce the number of seizures, and improve the person’s quality of life.
Vagus Nerve Stimulation
If surgery isn’t a treatment option, the doctor may discuss the possibility of vagus nerve stimulation (VNS). This involves a small electrical device, like a pacemaker, which is implanted under the skin of the person’s chest. The device sends electrical impulses to your brain through a nerve in your neck called the vagus nerve. The aim is to reduce the number of seizures you have and make them less severe.
The Ketogenic diet
The ketogenic diet is a specialist medical diet which is much higher in fats and lower in carbohydrates than a typical diet. The diet is a treatment option for some people whose seizures are difficult to control. This includes people with certain epilepsy syndromes, such as Lennox-Gastaut and Dravet syndrome.
There are a number of other conditions that can go with having a learning disability and epilepsy. It is just as important that these get diagnosed and treated as well as the learning disability and the epilepsy. Here are some of the conditions:
Sleep disorders and metabolic conditions
Between 3 and 6 out of every 10 people with a learning disability will have a sleep disorder. This is often undiagnosed. It’s important to get this treated, as it may well be making the person have more seizures.
It is also important that the person you look after is screened for metabolic disorders. These happen because of abnormal chemical reactions in the body. They are responsible for a range of different health conditions. Having one of these conditions untreated could make it more difficult for a doctor to understand why someone’s seizures are happening.
It could also make it difficult to know what side-effects of epilepsy medicines someone might be experiencing. The best thing to do is to ask the epilepsy doctor or GP if they think screening for metabolic disorders is needed. Many people will have been tested in childhood or have causes that make it clear there is no metabolic disorder.
People with learning disabilities and epilepsy are more likely to develop psychiatric disorders than people with learning disabilities alone. Some doctors may be cautious in treating psychiatric disorders, such as depression, with medicine, because they think that it will trigger seizures.
Evidence shows they can be safe and effective, but your doctor may need advice from a specialist in this area. It is important to bear in mind that epilepsy medicines can be a cause of psychiatric disturbances. It could be possible to change them so that the disturbances no longer happen. It is a good idea to talk this through with the doctor.
Some doctors have seen that barbiturates, benzodiazepines, and some epilepsy medicines can cause psychiatric disturbance, especially in someone with a family history of psychiatric disorder. But it is important never to stop taking prescribed medicines without medical guidance.
As well as the side-effects of epilepsy medicines already listed, there are many other possible reasons for behavioural disturbance in a person with a learning disability and epilepsy. Here are some possible causes:
- Heartburn or acid reflux. This is a burning feeling in the chest caused by stomach acid travelling up towards the throat. If it keeps happening, it’s called gastro-oesophageal reflux disease (GORD)
- Sleep disturbance
- ADHD (Attention deficit hyperactive disorder)
Diagnosing seizures in someone who already has a learning disability and autism can be complex. A video of the person’s seizures can be particularly helpful in this situation.
If the person you look after has all three conditions it is vital for the various professionals involved to communicate with each other. This is to make sure the person gets the best possible treatment overall.
Being given too much medicine
People with a learning disability, behaviour problems and/or autism are sometimes over-prescribed medication. There is a project called STOMP which aims to help stop the overuse of medicines for these conditions. STOMP stands for stopping over medication of people with a learning disability, autism or both.
The NHS and the Challenging Behaviour Foundation both have more information about this. It includes information on what to do (and not do) if you think this might be happening for the person you care for.
Telephone: 0300 123 1053
Helpline: 0808 808 7777
Supporting organisations which provide services for people with learning disabilities
Telephone: 0121 415 6960
Supporting people with a learning disability
Helpline: 0808 808 1111
Making the country a better place for disabled people
Helpline: 0808 800 3333
Easy Read publications
Influencing policies and services
Tel: 020 7803 1100
Supporting people with disabilities in Northern Ireland
Tel: 028 9046 1834
Download our epilepsy information
Epilepsy Action easy read resources
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