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of everyone affected by epilepsy

Getting the right treatment and care for your epilepsy

These pages are about getting treatment in England. If you are looking for information in another country, please contact your local epilepsy organisation.

Being able to get the right treatment for your epilepsy is related to various guidelines and initiatives. 

Follow these links to find a summary of the guidelines and initiatives on our web pages:

Follow these links to find full information on the guidelines and initiatives:

In this section 

Introduction
After a first seizure
Getting a first or new referral to an epilepsy specialist team – Choose and Book
How to manage your treatment
Epilepsy medicines
Free prescriptions
Annual review
Specialist epilepsy centres
Getting another opinion
Being a partner in your healthcare
Your responsibilities
What to do if you are unhappy with your treatment
Support in the community
Complaints about community care services

Introduction

The NHS Constitution

The NHS Constitution sets out your rights as an NHS patient. These rights include access to health and community care services, and to quality care and treatment. They also cover your right to confidentiality, information, and the right to complain if things go wrong.

The NHS Constitution says that you have a right to the best treatment and care available in England for your epilepsy.This information tells you what services are available if you have had a first seizure and are waiting for a diagnosis of epilepsy. It is also for you if you have had epilepsy for some time, but still have unmet care or treatment needs. It is organised in the form of a journey.

The first part is about what services you should expect when you have had a first seizure.

The next part is about what you can do if your seizures are not controlled over time, or your care or treatment needs change.

The final part tells you what you can do if your care or treatment doesn’t meet the expected standards. 

For full information follow these links:

After a first seizure

NICE (the National Institute for Health and Care Excellence) recommends that all children, young people and adults are referred to an epilepsy specialist within two weeks of having a first seizure. For adults this specialist is a doctor with training and expertise in epilepsy. For children, this is usually a paediatrician (children’s doctor) with training and expertise in epilepsy.

If you go to A&E (Accident and Emergency) after your first seizure, you might see an epilepsy specialist there, and have some tests done. If you do, and are diagnosed with epilepsy at this point, that specialist might continue caring for your epilepsy in the future. If you do not see an epilepsy specialist at A&E, once they are sure you are all right, they should ask your GP (family doctor) to refer you to an epilepsy specialist.

You may not need to go to A&E after your first seizure, but might go to your GP. NICE says you should be referred to an epilepsy specialist within two weeks. It’s important to get the right diagnosis so that you can get the best treatment for you and your epilepsy.

More information on what to do if you're unhappy with your treatment

Getting a first or a new referral to an epilepsy specialist team – Choose and Book

In England, where it is available, the Choose and Book service lets you choose and book your first appointment with a consultant-led epilepsy specialist team.  A consultant-led team is where a consultant has overall clinical responsibility for the service, team or treatment. The consultant will not always be at your appointment, but they will take overall responsibility for your care.

You might need an appointment with a named consultant-led epilepsy specialist team because of any of the following:

  • You and your doctor think you need a second opinion
  • You already have a diagnosis of epilepsy but have never seen an epilepsy specialist
  • You already have a diagnosis but haven’t seen an epilepsy specialist for many years
  • You already have a diagnosis of epilepsy but have been discharged from your epilepsy specialist and now need a specialist review of your epilepsy

Choose and Book gives you some choice about the place, time and date of your appointment.

How Choose and Book works

Firstly, you and your GP should agree that you need a referral to a specialist team. Your GP will then be able to see, through the Choose and Book system, which hospitals or clinics are available for your referral. Your GP can help you decide which team will be best for you.

If you know where and when you would like to be seen, you may be able to book your appointment before you leave your GP surgery. At that time, you will get confirmation of the place, date and time of your appointment.

If you want more time to consider your choices, your GP will give you an Appointment Request letter to take away with you. You can then book your appointment later. Your Appointment Request letter lists:

  • Your unique booking reference number, given to you by your GP
  • Your NHS number
  • A list of hospitals or clinics for you to choose from

Your GP practice will also give you a password with your Appointment Request letter. You can then book your appointment by telephone, or online.

More information about Choose and Book is available on the Choose and Book website.
Website: chooseandbook.nhs.uk

Information about how different hospitals are rated is available at the Care Quality Commission website.
Website: cqc.org.uk

Waiting times

The average waiting time using Choose and Book is around eight weeks. The longest you should wait is 18 weeks. You can find more information about hospital waiting times on the NHS Choices website: nhs.uk. Or they will give information over the phone at the Choose and Book telephone line: 0345 608 8888.

The benefits of Choose and Book

  • You can choose any hospital that treats your condition in England and is funded by the NHS. This includes NHS hospitals and some independent hospitals. More information about hospitals is available on the NHS Choices website: nhs.uk/servicedirectories

  • From the appointments available, you can choose the date and time of your appointment

  • There is less chance that information will get lost in the post because more correspondence takes place through computers

What people say about Choose and Book

You can read about the experience of people who have used Choose and Book on the Choose and Book website: chooseandbook.nhs.uk

If you do not use the internet, you can telephone the Choose and Book appointment line, tel. 0345 608 8888.

Exceptions to Choose and Book

NICE (the National Institute for Health and Care Excellence) says that people who have had a possible first seizure should be seen ‘urgently’. This means within two weeks.

If it is recommended that you are seen urgently, and this is what you decide to do, it’s unlikely you will have a choice of where to go. This is because there may not be a choice of hospitals who can see you within that time.  In this case, it’s likely your doctor will refer you wherever an urgent appointment is available.

However, if you and your doctor decide that you could be seen at a hospital of your choice, it’s likely you will go on a waiting list.

Epilepsy Action has more information about NICE.

You can also find information on the NICE website: nice.org.uk

How to manage your treatment for epilepsy

Epilepsy medicines

Once you have a diagnosis of epilepsy, the best way to stop your seizures is usually with epilepsy medicines. NICE recommends particular drugs for particular types of epilepsy. The NHS Constitution says you have a right to drugs and treatment that have been recommended by NICE (the National Institute for Health and Care Excellence), if your doctor says they are the best ones for you.

With the right dose of the right epilepsy medicine, around seven out of every 10 people with epilepsy can become seizure free. If you don’t get control of your seizures with one epilepsy medicine, you doctor might suggest adding another one. 

Free prescriptions

If you have epilepsy and take epilepsy medicines, you are entitled to free prescriptions. This is for all your prescription medicines, not just your epilepsy medicines.

Epilepsy Action has more information on free prescriptions

Annual review

NICE (the National Institute for Health and Care Excellence) recommends that you should have a regular review of your epilepsy and treatment. If you are an adult, this could be with your epilepsy specialist, specialist nurse or GP. For children, a review should take place at least once a year, usually with a paediatrician. The review should offer an opportunity to discuss any epilepsy related issues that you feel are important to you at that time. This could include pre-conception counselling, if you are a woman considering becoming pregnant.

For a woman with epilepsy, pre-conception counselling is an appointment with a doctor or nurse who knows about pregnancy and epilepsy. The aim is to make your future pregnancies as healthy as possible. It is also a chance to talk about any risks that your epilepsy or epilepsy medicine may pose to your baby. Some epilepsy medicines, taken at low doses, carry very little extra risk. Other epilepsy medicines carry a higher risk.

Specialist epilepsy centres

If your seizures are not controlled after you have tried two epilepsy medicines, or after two years, NICE (the National Institute for Health and Care Excellence) recommends that you are referred to an epilepsy specialist centre. The specialist centre should see you within four weeks. They will look again at your diagnosis of epilepsy, and epilepsy medicines, to make sure you are getting the best treatment. Apart from epilepsy medicines, they may offer you different treatments, including different types of epilepsy surgery, if appropriate. Some children with difficult to control epilepsy might be offered the chance to try a special diet to control seizures, called the ketogenic diet. 

Getting another opinion

If you are unhappy with your diagnosis or treatment, you have a right to ask to see another epilepsy specialist. Although you don’t have a legal right to see another specialist, your current specialist or GP will consider your request. The Choose and Book service can be used for getting another opinion. But, as you have already seen a specialist for your epilepsy, the two week rule will not apply, and you will usually be added to the new specialist’s waiting list.

Being a partner in your healthcare

The NHS Constitution says you have a right to be involved in your healthcare.

To be involved in your healthcare, you should be given the information to manage your condition as well as possible. You should be involved in all decisions about your healthcare and lifestyle. Your healthcare provider should copy you into any letters they write about you and your treatment. And they should provide information in a format that is useful to you about a range of issues such as:

  • Epilepsy as a condition
  • Treatment options
  • Risk management
  • First aid
  • Driving
  • Work
  • Education

You should also have an individual care plan agreed between you, your family or carers if appropriate, and your epilepsy specialist or specialist nurse.

Epilepsy Action has a patient care plan that you could use

Your responsibilities

Being a partner in your care and treatment means you also have some responsibilities.

The NHS Constitution says your responsibilities include:

  • Recognising that you can make a significant contribution to your good health and wellbeing
  • Registering with a GP practice
  • Following courses of treatment you’ve agreed to
  • Always treating NHS staff and other patients with respect
  • Keeping GP and hospital appointments – or if you have to cancel, doing so in good time
  • Giving feedback – both positive and negative – about treatment you’ve received

What to do if you are unhappy with your treatment from your GP or hospital

The NHS Constitution says you have a right to complain about any NHS Services you receive, and to have your complaint dealt with properly. 

If you are unhappy with the care or treatment from your GP, talk to your GP or the practice manager. You could also consider seeing a different GP, or changing to another practice. Information about making a complaint about your GP can be found on the NHS Choices
Website: nhs.uk

If you are unhappy with your care or treatment from your hospital, talk to your epilepsy specialist or epilepsy nurse. They may be able to reassure you, or make sure that the problem doesn’t happen again. If you are still unhappy, talk to your GP about your concerns and ask about other options for your treatment. This may include getting an opinion from a different epilepsy specialist.

If you wish to make a complaint about your care and treatment from your hospital, contact the Patient Advice and Liaison Service (PALS) or the NHS Trust responsible for that hospital.

You can find details of these organisations through the NHS Choices
Website: nhs.uk

Support in the community

If your epilepsy means that you need care or support, you are entitled to ask for a community care assessment. A community care assessment is a review of your personal circumstances and needs. It is carried out by adult social care, or social services from your local authority, who have a duty to carry out assessments for anyone who needs one. 

During a community care assessment, a social worker will look at how you cope with day-to-day living.

They should take into account:

  • Your wishes, as the person being assessed
  • Whether you have any particular difficulties, such as walking or climbing stairs
  • Whether you have any particular health or housing needs
  • What sources of support you have, such as carers, family or nearby friends, and how willing they are to care for you
  • Any needs the people who provide care may have

They could recommend such things as: 

  • Getting you a seizure alarm, or a shower
  • Getting you some help with household tasks, such as cooking and cleaning
  • Moving you to more suitable accommodation

You can contact your local authority direct, or ask your GP to refer you for a community care assessment. However, having a community care assessment does not automatically mean you are entitled to these services.

Complaints about community care services

If you are not happy with your community care assessment, contact your local authority for a copy of their complaints procedure. They have a duty to investigate your complaint. If they can’t resolve your complaint, you can ask the Local Government Ombudsman to investigate.

For more information see the Ombudsman website.
Website: ombudsman.org.uk 

Also see information on Epilepsy Action's 2014 Seize Control campaign.

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Helplineon 0808 800 5050.

Code: 
F148.01

Epilepsy Action would like to thank Carole Rushworth, Practice Manager and Dr Withers, GP, at Grange Practice, Allerton, Bradford, UK and Jo Geldard, Epilepsy Specialist Nurse, Leeds, UK for their help in producing this information.

Carole Rushworth, Dr Withers and Jo Geldard have no conflict of interest to declare.

This information has been produced under the terms of The Information Standard.

  • Updated August 2014
    To be reviewed August 2017

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