Northern Ireland: getting the right treatment and care

Epilepsy services in Northern Ireland are currently affected by a shortage of neurologists and epilepsy specialist nurses (ESNs). This might cause delays to your treatment and care, such as waiting to being seen in a first seizure clinic.  This page explains what you should be able to expect. If you feel services are falling short, we have information about your rights.

We list links to organisations and guidelines below that can help you get the right treatment and care.

There are specific pages for epilepsy services in Wales, Scotland and England.

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 a neurologist. Or they might ask your GP to arrange this.

If you have attended A&E within the Belfast Trust, you may be referred to the first seizure clinic.

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

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 neurologist.

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.

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

The National Institute for Health and Care Excellence (NICE) guidelines on epilepsy apply to Northern Ireland, England and Wales. They say that after a first suspected seizure, you should see an epilepsy specialist within 2 weeks of your GP making the 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 and how many people are on the waiting list. But you should be seen within NHS maximum waiting times.

The Public Health Agency Health and Social Care Board sets out targets for waiting times. Currently the actual waiting times for first appointments and reviews are much longer than the their target. The neurology services are working hard to see how they can improve this.

At first you are likely to see a neurologist. If you need a more specialist doctor and there isn’t one within your trust you may be referred to the Regional Services in Belfast.

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

The neurologist should talk to you about what happened before, during and after your seizure, plus any other symptoms you have. They will use this 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 some 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 about things to ask.

You can also contact the free Epilepsy Action Helpline.

Who will I see about my epilepsy treatment?

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 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 to manage 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 treatment?

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 the regional epilepsy specialist services in Belfast, to be seen within 4 weeks, 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
• You might benefit from specialist treatments, such as certain epilepsy medicines, 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 children who have or might have epilepsy should be referred to a specialist centre to 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 treatment for my epilepsy outside Northern Ireland?

If your consultant thinks you may need assessment or treatment which is not available in Northern Ireland, they can make an application to the Health and Social Care Board (HSCB) for this service. If the HSCB agrees, this is called an Extra Contractual Referral (ECR). You would need to go outside Northern Ireland for any epilepsy surgery apart from vagus nerve stimulation.

More information on travelling outside of Northern Ireland for treatment can be found here.

What can I do if I’m not happy with my treatment or care?

If you are unhappy with any part of your epilepsy treatment or care, you could:

Can I get a second opinion?

If you’re not happy with the diagnosis or treatment recommended by your current neurologist, 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 neurologist should consider your request.

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

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

Getting a second opinion from a different neurologist doesn’t automatically mean they’ll take over your care. If you want to be treated by the new neurologist you’ll need to arrange this with the hospital. The Patient and Client Council can help you with this. See organisations and guidelines for more information about them.

If you need a service that is not available in Northern Ireland it may sometimes be possible to refer you elsewhere, such as the National Hospital for Neurology and Neurosurgery in London.

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 social services. You have the right to ask the social services department of your local trust 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 social services team will look at how you cope with day-to-day living, and 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

The Neurological Care Advice Service can also offer advice and support.

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 social care 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 Northern Ireland Public Services 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.

Department of Health, Social Services and Public Safety

The Department of Health, Social Services and Public Safety has overall authority for health and social care services. The services are commissioned by the Health and Social Care Board and provided by five Health and Social Care Trusts.

Health and Social Care Boards

Each Health and Social Care Board is responsible for commissioning services, managing resources and performance improvement.

NI Direct

The government website with a range of information including for people with disabilities.

Patient and Client Council

The Patient and Client Council provides advice and information and support on making complaints about the health service in Northern Ireland.

Citizens Advice

Citizens Advice provides advice to everyone on their rights and responsibilities. They have information about your rights as an NHS patient.

Neurological Care Advice Service

The Neurological Care Advice Service offers information, advice and support to adults with any neurological condition, their families and carers in Northern Ireland. Their telephone number is 028 9063 5855. They are not a medical organisation.