Wales: getting the right treatment and care

Below we describe the treatment and care standards you should be able to expect if you have epilepsy and you live in Wales.

We know that people in Wales are struggling to access the health care and support they need. Epilepsy Action Cymru have been campaiging for more funding and resources and have written a report outlining the available epilepsy services across the health boards in Wales. We have shared this report with the Welsh Government and will be working to ensure that they implement the report’s recommendations.

We list some different organisations and guidelines that can help you get the right treatment and care and have more information about your rights.

The information on this page applies to people who live in Wales. We have separate pages for people in England, Scotland and Northern Ireland.

What should happen if I’ve had a suspected first seizure?

If you go to A&E (Accident and Emergency) after your first seizure, they might do some tests to try and work out what caused it. It can help diagnosis to have an account of what happened when you had your seizure.

Anyone can have a one-off seizure, but this doesn’t always mean they have epilepsy. You will usually only be diagnosed with epilepsy if:

• You have had two or more seizures or
• You have had one seizure and the doctor thinks there is a high chance you could have more

If the doctors at A&E think you might have epilepsy, they should arrange for you to have an outpatient appointment with an epilepsy specialist. They might ask your GP to arrange this.

Doctors who have extra training and expertise in diagnosing and treating brain conditions are called neurologists.
Neurologists who specialise in epilepsy are also sometimes called epileptologists.

You may not need to go to A&E after a suspected first seizure, but you might go to your GP. If they think you’ve had an epileptic seizure, they should arrange an appointment for you with an epilepsy specialist.

The hospital or your GP should give you advice on what to do if you have another seizure while you are waiting for your appointment with the specialist.

How long will I wait to see a specialist for the first time?

The National Institute for Health and Care Excellence (NICE) guidelines on epilepsy apply to Wales, England and Northern Ireland. They say that after a first suspected seizure, you should see an epilepsy specialist within 2 weeks of your referral.

The NICE guidelines are recommendations, and not law. The actual length of time it takes to see a neurologist for the first time is likely to depend on how many appointments are available. It will also depend on how many people are on the waiting list. But you should be seen within NHS maximum waiting times. In Wales, NHS targets say you should be able to start treatment within 26 weeks.

What should happen when I see the specialist for the first time?

The epilepsy specialist should use information about what happened before, during and after your seizure, and any other symptoms you have, to help them make a diagnosis.

If you have a video of the seizures that could be really helpful. If you can, you may find it helpful to take a family member or friend with you to your appointment. They may be able to describe what happens when you have a seizure.

Sometimes they will be able to tell you there and then if they think you have epilepsy. Sometimes they may ask you to have tests to help them make a diagnosis. They should explain what will happen during the tests, and why they want you to have them.

I have more questions. Who can I ask?

Ideally your epilepsy specialist can answer questions you may have, including those on safety and lifestyle. They may arrange for you to see an epilepsy specialist nurse if there is one at your hospital who can help to answer your questions. Your epilepsy nurse may not be available on the same day. Sometimes you may be able to contact the nurse by phone. See Questions to ask your doctor for some suggestions of things to ask.

You can also contact the free Epilepsy Action Helpline.

Who will I see about my epilepsy treatment and care in Wales?

Your epilepsy will be treated by the neurologist or GP. NICE says that all children, young people and adults with epilepsy should also have access to an epilepsy specialist nurse, but we know this is not yet the case for everyone. Your GP or neurologist might arrange for you to see an epilepsy specialist nurse, if there is one in your area.

These are nurses with training and expertise in epilepsy. They can help with:

• Answering questions about your treatment and living with epilepsy
• Offering you an information and care-planning session that includes looking at your emotional wellbeing and ways of managing your epilepsy
• Supporting you to reach your goals, achieve independence and improve confidence
• Helping you to become an expert in your own epilepsy
• Guiding you through shared decision-making
• Being a link between you and your neurologist
• In some areas, epilepsy specialist nurses have extra training so that they can prescribe epilepsy medicines

How often should I have a review of my epilepsy treatment and care?

NICE recommends that children and young people should have a regular epilepsy review with a doctor or nurse at least once a year.

If you are an adult, NICE says you should have a review at least once a year if any of these things apply:

• You have a learning disability
• You have drug-resistant epilepsy. This means you have tried 2 or more epilepsy medicines and are still having seizures
• You are at high risk of sudden unexpected death in epilepsy (SUDEP)
• You have another serious health problem alongside your epilepsy, such as a complex mental health problem
• You are taking epilepsy medicine that has a risk of long-term side effects or interactions with other medicines
• You are able to get pregnant and are taking sodium valproate or another medicine that has a high risk of causing problems if taken during pregnancy

If you are still having seizures, NICE also says you should be offered an appointment with an epilepsy specialist nurse at least twice a year, and after any visits to A&E.

Even if none of these things apply to you, you can still ask for a review of your epilepsy if you have any concerns. Examples of times you might ask for a review include if you:

• Want to discuss stopping or changing your medicine
• Are planning to get pregnant
• Have had any change in your seizures. For example, the seizure type or how often they happen

Referral to specialist epilepsy services

NICE says that all children, young people and adults who have, or might have, epilepsy should have access to a specialist epilepsy service if needed. This is sometimes called a tertiary centre or tertiary service. Your specialist should refer you to a specialist centre if any of these things apply:

• They are not sure about what type of epilepsy, epilepsy syndrome or seizures you have
• You have tried 2 or more epilepsy medicines, but are still having seizures
• You have a particular epilepsy syndrome that is linked to a high risk of difficult to control seizures
• You have, or are at risk of, severe side effects from your epilepsy medicine
• You might benefit from further tests that are not available at your usual hospital
• Specialist treatments may help you, such as certain epilepsy medicines. Or, other treatments like the ketogenic diet, epilepsy surgery or vagus nerve stimulation (VNS)
• You have a learning disability, physical disability or mental health problem that means you need extra specialist support to manage your epilepsy
• You would like to take part in a clinical trial or research study that you are eligible for

NICE also says that certain children who have, or might have, epilepsy should be referred to a specialist centre. They should be seen within 2 weeks if any of these things apply:

• They are under 3 years old
• They are under 4 years old and have myoclonic seizures
• They have some damage or other problem affecting one side of their brain
• Their behaviour, speech or learning are getting worse

A regional children’s neurology centre may also refer cases to the Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS). This service discusses people who have very complex epilepsy and gives advice to the doctor who made the referral.

Can I get a second opinion from a different specialist?

If you’re not happy with the diagnosis or treatment recommended by your specialist, you might consider asking for a second opinion. You don’t have a legal right to a second opinion, but if you ask for one your GP or specialist should consider your request.

There are 2 ways you can ask for a second opinion:

• Ask your current specialist to arrange for you to see someone else
• Ask your GP to refer you to a different specialist

Getting a second opinion from a different specialist doesn’t automatically mean they’ll take over your care. If you want to be treated by the new specialist you’ll need to arrange this with the hospital. The Patient Advice and Liaison Service (PALS) may be able to help. See useful organisations for more information about PALS.

What if I need extra care and support?

If your epilepsy means that you need extra care and support, you may qualify for help from your local Adult Services. You have the right to ask your local authority for a needs assessment to see if this is the case. A carer, friend, family member or your GP can also ask for a needs assessment for you.

During a needs assessment, your local Adult Services team will look at how you cope with day-to-day living. They will identify if you might need support from social care services. The type of support you get will depend on your individual needs, but can include things like:

• Getting you a seizure alarm
• Making adaptations to your home to make it safer for you
• Getting you some help with household tasks, such as cooking and cleaning
• Moving you to more suitable accommodation

Carers UK has more information about needs assessments.

Local authorities are legally obliged to carry out a needs assessment for anyone who might need extra care and support. If they decide you are eligible to get help through Adult Services, they also have a duty to provide this help to you. How much of this help they pay for and how much you have to pay towards it is based on your individual circumstances.

If you need extra care and support, you may also be entitled to some benefits.

Epilepsy Action has information on Carer’s Allowance.

Complaints about social care services

If you are not happy with your needs assessment, you can complain to your local authority. They have a duty to investigate your complaint. If they can’t resolve your complaint, you can ask the Local Government Ombudsman to investigate.

Useful guidelines and organisations

National Institute for Health and Care Excellence (NICE)

NICE gives advice to the NHS on caring for people with specific conditions or diseases and the treatments they should receive. NICE’s advice about epilepsy is set out in its guideline: Epilepsies in children, young people and adults. The advice in this guideline applies to England, Wales and Northern Ireland.

Patient Advice and Liaison Service (PALS)

Each health board in Wales has a PALS office. PALS gives free, impartial advice to help you resolve any issues with your NHS treatment or care. They can also give you information on how to complain and tell you where to get help with making a complaint.

You can find your nearest PALS office on the NHS website.

Advocacy services

An advocate is someone who can speak up for you if you find it difficult to do so yourself. This could involve them talking to the healthcare professionals involved in your care. They may also attend meetings and appointments with you or help you to make a complaint. Advocate services are free and independent of the NHS and social services.

Contact your local council to find an advocacy service near you.

Community Health Councils in Wales

If you want to make a complaint about an NHS service in Wales, the Community Health Council (CHC) in your area can give you advice and support. Find your local CHC on the CHC website.

Citizens Advice

Citizens Advice provides advice to everyone on their rights and responsibilities. They have information about your rights as an NHS patient and how to complain about NHS or social care services.