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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’s unlikely you’ll be diagnosed with epilepsy after a single seizure.
If the doctors at A&E suspect you may have epilepsy they should arrange for you to have an outpatient appointment with an epilepsy specialist. They might ask your GP to arrange this. An epilepsy specialist is a neurologist with training and expertise in diagnosing and treating epilepsy.
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 should I have to wait to see a specialist for the first time?
The National Institute for Health and Care Excellence (NICE) guidelines on epilepsy 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. 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. 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. The nurse may have more time 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.
How should my epilepsy should be treated?
If the specialist 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. See our information about care plans to download or order a template care plan.
The main way to control your seizures is with epilepsy medicine. NICE has a list of medicines it recommends for treating epilepsy. The NHS in Wales follows NICE’s recommendations of which medicines to prescribe.
Sometimes an epilepsy medicine comes onto the market in the UK, but NICE doesn’t look at it straight away. When this happens your specialist may still be able to prescribe the medicine for you, but only if the NHS in your local area has decided it will pay for it. In Wales, the All Wales Medicines Strategy Group makes these decisions.
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 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 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
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 epilepsy specialist or epilepsy nurse. They may be able to reassure you, or make sure that the problem doesn’t happen again.
Your specialist 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.
If you want to see a different specialist, see Can I get a second opinion from a different specialist?
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. See the end of this page for details of organisations that can help if you want to make a complaint. The NHS website has more information about how to complain about an NHS service.
Can I get access to my health records?
Healthcare professionals are legally required to show you your health records if you ask for them. This should be done for free. There are a few different records. It may take a little while for you to be able to see them.
The NHS website gives more information about accessing your health records.
Can I get a second opinion from a different specialist?
If you’re not happy with the diagnosis or treatment recommended by your current 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.
How can I help myself get the right treatment and care?
There are things you can do to be actively involved in getting the treatment and care you need:
- Registering with a GP practice
- Treating NHS staff and other patients with respect. Abusive or violent behaviour could mean you’re refused access to NHS services
- Keeping appointments, or if you need to cancel, doing so in reasonable time
- Following the course of treatment you’ve agreed, and talking to your doctor or nurse if you find this difficult
- Giving feedback, both positive and negative, about your treatment and care
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, 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
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.
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 to investigate. . If they can’t resolve your complaint, you can ask the Public services Ombudsman for Wales to investigate.
Guidelines, initiatives and useful 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.
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, attending meetings and appointments with you, or helping 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.
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