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On this page we explain what should happen at each stage of your epilepsy treatment and care. We explain what your rights are, and what standards you should be able to expect from health and care services.
We also talk about the different organisations, guidelines and initiatives that can help you get the right treatment and care. You can find out more about them at the bottom of the page.
The information on this page applies to people in 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 suspect you may 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.
How long should I have to 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. The current targets are that, by March 2021, 5 out of 10 patients should be seen within 9 weeks for a first appointment. And that no-one should have to wait more than 52 weeks. At present the actual waiting times for first appointments and reviews are much longer than this. 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 use information about what happened before, during and after your seizure, and any other symptoms you have, to help them make a diagnosis. 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 their diagnosis. They should explain what will happen during the tests, and why they want you to have them.
Epilepsy Action has a list of suggested questions to ask your doctor.
How should epilepsy be treated?
If the neurologist diagnoses you with epilepsy, they should tell you about possible treatment options. They should also agree an epilepsy care plan with you. This should cover your treatment, what to do if you have a seizure, and any preferences or lifestyle issues you have discussed. A care plan is especially useful for people who have long seizures or status epilepticus.
See our information about care plans to download or order a template care plan. Sometimes a care plan will be in the form of a letter to the GP, so you are likely to want a copy of this.
The main way to control your seizures is with epilepsy medicine. The British National Formulary has a list of epilepsy medicines. Epilepsy medicine is available in different versions made by different companies. NICE says that while you are taking an epilepsy medicine, you should be able to stay on the same manufacturer’s version of it. This is unless you and your doctor don’t feel that switching versions would cause any problems.
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 help in the following ways:
- Answer questions about your treatment and living with epilepsy
- Offer you an information and care-planning session that includes looking at your emotional wellbeing and ways of managing your epilepsy
- Support you to reach your goals, achieve independence and improve confidence Support you to become an expert in your own epilepsy
- Guide you through shared decision-making
- Provide a link between you and your neurologist
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 (meaning 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
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 an epilepsy syndrome which means your seizures are likely to be difficult to control with epilepsy medicines
- 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
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 procedure and costs.
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:
- Talk to the people involved
- See a different healthcare professional
- Make a complaint
Talk to the people involved
Talking to the people involved can sometimes be the easiest way to resolve any problems. You could talk to your GP, the GP practice manager, your neurologist or epilepsy nurse. They may be able to reassure you, or make sure that the problem doesn’t happen again. Your neurologist should be able to explain why they have made their diagnosis, or why they think the treatment they are recommending is right for you.
See a different healthcare professional
If you’re not happy with your treatment from a GP, you could book an appointment with a different GP at the same surgery. If you don’t feel happy seeing any of the GPs at your current surgery, you have the right to leave and register with a different surgery.
Make a complaint
You have the right to complain about any aspect of NHS care or treatment, and to have your complaint dealt with properly. NI Direct has information about making a complaint about the health service in Northern Ireland. They also have contact details for the people who deal with complaints depending on which service you are complaining about and where that service is.
If at all possible it is always best to try and resolve the complaint with the organisation concerned. If this doesn’t work or doesn’t feel possible then you will need to be in touch with the Health and Social Care Board’s Complaints Officers:
Tel: 028 9536 3893
For the Western area:
Tel: 028 9536 1093
For more specific contacts see the NI direct website.
For help making a complaint you can also contact the Patient and Client Council. They give free and confidential advice and information about making a complaint.
Tel: 0800 917 0222
When you have been through this complaints procedure, if you are still not happy, you can ask the Northern Ireland Public Services Ombudsman to look at your complaint.
Tel: 0800 343 424
Can I get a second opinion from a different neurologist or epilepsy specialist?
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 Useful Organisations 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 to an English hospital 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.
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.
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.
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 provides advice to everyone on their rights and responsibilities. They have advice about health services.
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 9504 2270. They are not a medical organisation.
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