Scotland: getting the right treatment and care

The information on this page applies to adults in Scotland.

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 guidelines for treatment are covered by the Scottish Intercollegiate Guidelines Network (SIGN).

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. Or 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 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?

NHS Scotland has recommended that all NHS Boards use a patient focused booking practice. This means that your doctor should talk to you about the best date and time when making a referral. The timing should follow the Treatment Time Guarantee Waiting Time guidance. This says that you should be able to have an appointment within 12 weeks of the referral.

Once you have a diagnosis the Scottish government states that there should be no more than 18 weeks between being referred to an epilepsy clinic and receiving treatment if appropriate. This means that your tests and diagnosis should all have been done during this time.

For more information on hospital waiting lists see the Citizens Advice Scotland website.

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.

The specialist may 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 freephone Epilepsy Action Helpline.

How should my epilepsy be treated?

Care plans

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.

Epilepsy medicines

The main way to control your seizures is with epilepsy medicine. The decision about starting epilepsy medicine should be a joint one between you and your epilepsy specialist.

The specialist will choose epilepsy medicines that match your seizure type. Sometimes taking more than one epilepsy medicine at once can offer you better seizure control than a single medicine. The recommendation is, wherever possible, to limit the number of epilepsy medicines you take to 2 or at the most 3.

The SIGN guidelines have more information about medicines they recommend for treating epilepsy.

When a new epilepsy medicine comes on the market, the Scottish Medicines Consortium has to accept it before the NHS Boards can prescribe it.

Epilepsy medicine is available in different versions made by different companies. The SIGN guidelines say that while you are taking an epilepsy medicine, you should be able to stay on the same manufacturer’s version of it. The Medicines and Healthcare products Regulatory Agency guidance on switching epilepsy medicines also applies to Scotland.

Will I be prescribed medicine after a single seizure?

After a single seizure the epilepsy specialist won’t necessarily prescribe you epilepsy medicine. This is because many people have a single seizure in their lives but do not have epilepsy. The SIGN guidelines recommend that you shouldn’t be given epilepsy medicine until you have a confirmed diagnosis of epilepsy.

If the epilepsy specialist is unsure about your diagnosis, the guidelines say it’s better to wait and see before they decide on treatment. However, there may be times when it is appropriate to prescribe after a single seizure. This should include your preferences and should be discussed with you.

Who will I see about my epilepsy treatment?

Your epilepsy will be treated by the neurologist or GP. 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.

The nurse can answer questions about your treatment and living with epilepsy. They can support you to reach your goals, achieve independence and confidence. They can also help you become an expert in your own epilepsy and help you through shared decision-making.

They can provide a link between you and your neurologist. Some epilepsy specialist nurses may be nurse prescribers. This means they are qualified to write prescriptions. This role is described in the NICE guidelines: ‘Who will provide your care?’

How often should I have a review of my treatment?

The SIGN guidelines says you should have a review of your epilepsy treatment at least once a year. For adults, this is usually with your GP, but sometimes it should be with an epilepsy specialist. Examples of times you might need to see a specialist for your review include:

• If you continue to have seizures
• If you have side-effects from your epilepsy medicines
• If you are planning a pregnancy
• If you want to stop taking epilepsy medicine
• If you are able to get pregnant and are taking sodium valproate

Children and young people should have their review with a specialist at least once a year. This can be more often if needed.

What if my seizures are difficult to control?

If you have had a few different epilepsy medicines and they haven’t been able to give you seizure control, you may need to have your diagnosis reviewed. The epilepsy specialist is also likely to check that you are taking your epilepsy medicine as prescribed. If you continue to have seizures, the epilepsy specialist may consider reducing some of your epilepsy medicines.

If you’re struggling with side-effects of your epilepsy medicines you may want to talk to your epilepsy specialist about a reduction of your epilepsy medicines. This could mean you have a few more seizures but that the side-effects from the epilepsy medicines are more bearable. But it’s important only to do this with the advice and guidance of a specialist.

If your epilepsy is difficult to control, your specialist might refer you to a more specialised epilepsy consultant or specialist epilepsy centre. They should do this:

• If you are still having seizures (especially tonic-clonic ones) and
• If you have tried two different epilepsy medicines at the right dose

People with epilepsy and learning disabilities

The SIGN guidelines say that all NHS Boards should make sure that people with learning disabilities who have complex epilepsy have access to specialist neurological services.

This should include access to learning disabilities epilepsy specialist nurses and learning disabilities psychiatrists (where appropriate).

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

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 the information under the heading ‘Can I get a second opinion from a different specialist.’

Extra support or care

If you have had a few different epilepsy medicines and they haven’t been able to give you seizure control, you may need to have your diagnosis reviewed. The epilepsy specialist is also likely to check that you are taking your epilepsy medicine as prescribed. If you continue to have seizures, the epilepsy specialist may consider reducing some of your epilepsy medicines.

If you’re struggling with side-effects of your epilepsy medicines you may want to talk to your epilepsy specialist about a reduction of your epilepsy medicines. This could mean you have a few more seizures but that the side-effects from the epilepsy medicines are more bearable. But it’s important only to do this with the advice and guidance of a specialist.

If your epilepsy is difficult to control, your specialist might refer you to a more specialised epilepsy consultant or specialist epilepsy centre. They should do this:

• If you are still having seizures (especially tonic-clonic ones) and
• If you have tried two different epilepsy medicines at the right dose

The SIGN guidelines say that all NHS Boards should make sure that people with learning disabilities who have complex epilepsy have access to specialist neurological services. This should include access to learning disabilities epilepsy specialist nurses and learning disabilities psychiatrists (where appropriate).

Getting support with making a complaint

You have the right to complain about any aspect of NHS care or treatment, and to have your complaint dealt with properly. The Patient Advice & Support Service (PASS) can help you with making a complaint.

PASS is a free, confidential information, advice and support organisation for anyone wanting to give feedback, make comments, raise concerns or make a complaint about treatment and care provided by the NHS in Scotland. You access this service through Citizens Advice Scotland. In June 2019 NHS Scotland published a new complaints procedure.

Citizens Advice also has information about your rights as an NHS patient.

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 or
• 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 & Support Service (PASS) may be able to help you with this.

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.

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 council. You have the right to ask them 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 council care 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 Scotland has more information about needs assessments.

Local councils 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, 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 circumstances.

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

How can I complain about my local council?

If you’re not happy with your needs assessment, you can complain to your local council. They have a duty to investigate your complaint. If they can’t resolve your complaint, you can ask the Scottish Public Services Ombudsman to investigate.

Useful websites and organisations

Scottish Intercollegiate Guidelines Network (SIGN)

SIGN develops evidence-based clinical practice guidelines for the National Health Service (NHS) in Scotland.

Patients Rights Act 2011

The Patients Rights Act 2011 lists your basic rights as a patient.

NHS Boards

NHS Boards are responsible for the protection and the improvement of healthcare services.  Find your local NHS Board.

Health Improvement Scotland-Community engagement

Previously known as the Scottish Health Council, Health Improvement Scotland aims to engage with individuals and communities to shape local services and influence national policy.

NHS Inform

NHS Inform offers a range of health information.

Public Health Scotland

This is an organisation aiming to improve and protect the health and wellbeing of all Scotland’s people.

NHS 24

The NHS 24 111 service provides urgent health advice out of hours, when your GP practice or dentist is closed.

Citizens Advice

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

Patient Advice & Support Service

Patient Advice & Support Service is a free, confidential information, advice and support for anyone wanting to give feedback, make comments, raise concerns or make a complaint about treatment and care provided by the NHS in Scotland. You access this service through Citizens Advice.

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, 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.
Find an advocacy service in Scotland.

Epilepsy Scotland

Epilepsy Scotland provides information and support for people with epilepsy in Scotland.