Epilepsy care - your rights

After a first seizure, or a seizure after a period of being seizure free, you should see a specialist within two weeks. You have a right to be treated by appropriately qualified and experienced staff.  

“People presenting with a suspected first seizure should be referred urgently to ensure that a specialist is involved early in diagnosing epilepsy. Diagnosing epilepsy can be complex and involving a specialist can help avoid misdiagnosis and ensure that the person receives the right care and support.” NICE clinical guideline 

“Refer children, young people and adults urgently (for an appointment within 2 weeks) for an assessment after a first suspected seizure.” NICE clinical guideline 

“The staff who provide NHS services must be appropriately qualified and have the experience needed to do their jobs well.” Handbook to the NHS Constitution 

You have the right to be treated by qualified and experienced NHS staff. Where epilepsy is suspected, adults should be referred to a specialist and children and young people should be referred to a paediatrician (children's doctor). Both should have expertise in assessing first seizures and diagnosing epilepsy. 

You should be referred for any necessary diagnostic tests (such as an Electroencephalogram – EEG or Magnetic Resonance Imaging – MRI) which should be done within six weeks. There is no single test to diagnose epilepsy but an MRI or EEG can be a useful part of the diagnostic process. The two week referral and six week referral times are guidelines and it can take longer. You might get an earlier appointment if you tell the hospital you can take a cancellation at short notice.

If you have been seen after one seizure, you should be given an individual assessment of your risk of having another seizure. You should be given information about how to recognise another seizure, first aid and safety, how to minimise any risk, and what to do if another seizure happens. 

The sooner epilepsy is diagnosed, the quicker you and your specialist can start making decisions about your treatment and management. Trying to get your seizures under control as soon as possible means that hopefully, you will have fewer, and they will have less impact on you physically and emotionally. 

You should also have access to an epilepsy specialist nurse (ESN) who can provide you with information, education, and support.

You have a right to choose who provides your care

“You have the right to make choices about the services commissioned by NHS bodies and to information to support these choices.”  NHS Constitution 

When you are referred to a consultant, you have the right to choose where you go (such as the hospital you go to). This does not include going to Accident & Emergency. You can find information to help you decide where you would like to go, on the NHS website. This includes information on the services offered by different hospitals and sometimes has reviews of the quality of those services. 

Most GPs offer the NHS e-Referral Service. This is an electronic referral system which allows you to choose which hospital you want to go to from any NHS hospital in England (including some private hospitals). You can see information about each hospital and book the date and time of your appointment online. 

You can ask for a second or ‘further’ opinion

Although you do not have a legal right to receive a second (or ‘further’) opinion, you can ask your GP or hospital doctor or consultant to be referred to another doctor for their opinion on your health condition. Healthcare professionals will rarely refuse to refer you for a second opinion if they think it is in your best interest. 

You might want a second opinion about your health condition, your diagnosis, or your treatment options. If you talk to your current doctor about why you feel a second opinion would be helpful, they may be able to answer any questions you have or explain anything you are not sure about. If you still feel that you want a second opinion, you can ask your GP to refer you either to another GP, or for a re-referral to another hospital doctor. 

The person you are referred to will know that you have been referred for a second opinion and will usually have access to any results from tests that you have already had. You might also find that your GP or doctor asks a colleague to give a second opinion if they feel it would be helpful.

If your epilepsy is difficult to diagnose or manage, you should be referred to a tertiary service for specialist care and treatment

“Children, young people and adults may need access to tertiary services at certain times during their care and these services should be available to everyone who needs them.” NICE clinical guideline 

Tertiary care is provided by specialist hospitals or units that focus on specific care for different conditions. You will need a referral from either your GP (primary care) or your local hospital or clinic (secondary care). Anyone referred to tertiary services should be seen within four weeks. You should be referred to tertiary services or ‘tertiary care’ if:

• the diagnosis or cause of your epilepsy is unclear, or if there is uncertainty about your seizure type or epilepsy syndrome;
• your seizures are not controlled with medication or if you are having problems with side effects, or if you or a child has a syndrome that is unlikely to be controlled with medication;
• you need further assessment, tests, or specialist treatments (such as the ketogenic diet or epilepsy surgery); or
• you are eligible to participate in a clinical trial or research study and wish to do so. 

Particular groups of children should be prioritised for more urgent referral within 2 weeks. 

In tertiary care, you should be seen by someone with expertise in epilepsy and have access to investigations to help you. This might include reviewing your diagnosis to see what kind of epilepsy and seizures you have, looking at what treatment you have already tried and how it worked for you, and to plan your treatment and management for the future. The aim of managing epilepsy is to fully control your seizures (so that you don’t have any), with the best treatment option for you and the least impact on your life.

If you have a learning disability, physical disability, or mental health problem you should be offered additional support to access a tertiary epilepsy service if needed. This may include having a family member or carer accompany you. 

You have a right to access NHS services and to treatment options that are appropriate for you 

“You have the right to access NHS services. You will not be refused access on unreasonable grounds. NHS services will always be available for the people who need them. No one can deny you the right to access these services because of your age, disability, race, gender or gender reassignment, sexual orientation, pregnancy and maternity, religion or belief, or marital or civil partnership status.”  Handbook to the NHS Constitution 

“You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you.”  NHS Constitution 

If your treatment is available on the NHS, you have a right to access this treatment. No one can deny you this right on unreasonable or discriminatory grounds. If the drug that is most suitable for your epilepsy is recommended by NICE and by your doctor, you have a right to receive it. This depends on:
•    the drug being ‘clinically appropriate’ (that it is the right drug for your epilepsy, seizures, and for you); and
•    the drug has been through a health technology appraisal.

The NICE guideline lists anti-seizure medications (ASMs), previously known as anti-epileptic drugs or AEDs, that are recommended for different types of epilepsy and seizures, which have been recommended through health technology appraisals. 

In addition to the guideline on epilepsy, NICE also publishes ‘technology appraisal’ guidance (TAs). This type of guidance evaluates the clinical and cost effectiveness of different medicines, tests, or devices, so that patients receive the best treatments, and the NHS makes the best use of its resources. They are often done for new treatments so that these can be recommended within the NHS. NICE uses evidence for the appraisal, which is reviewed and evaluated by an independent review group to look at the benefits and costs. 

There may be other drugs that have not been through an appraisal (for example, newer drugs), which may be useful for you.

For more information visit: 
epilepsysociety.org.uk/generic-branded
gov.uk/drug-safety-update/antiepileptic-drugs-updated-advice-on-switching-between-different-manufacturers-products

Most ASMs have two names, a generic name (for example carbamazepine) and a brand name given by the manufacturer (for example Tegretol). Some ASMs have more than one generic version, each of which can be given its own name. These are called branded generics. For some ASMs, different versions of the drug can vary slightly, and this could affect seizure control. 

The Medicines and Healthcare products Regulatory Agency (MHRA) has issued guidance on prescribing ASM, and has split ASMs into three categories. They say that ASMs in category 1 must be prescribed with the same version (consistency of supply), and that for other ASMs, in categories 2 and 3, this is less important. This aims to help doctors decide whether they should prescribe a particular version.

However, your doctor should look at your individual circumstances to see what will be best for you. The MHRA also advises that ‘patient perception’ should be considered. So if you are worried about being switched from one drug to another, this should be considered.

For more information visit: 
epilepsysociety.org.uk/generic-branded
gov.uk/drug-safety-update/antiepileptic-drugs-updated-advice-on-switching-between-different-manufacturers-products

You have a right to be involved in your health and care and to be given enough information to make informed decisions. Women and girls with epilepsy should be given information and support that is tailored to their needs.

“You have the right to be involved in planning and making decisions about your health and care with your care provider or providers....and to be given information and support to enable you to do this.”  NHS Constitution 

You should be as actively involved as you want to be in all discussions and decisions about your health and epilepsy management. Your healthcare professionals should make sure you have the information you need at the time you need it, and that it is given in a way that is useful for you so that you can understand how it affects you individually. 

See our page for further information on involvement in your own healthcare, including your right to information and information specific to women and girls.

You should have a care plan agreed with your healthcare professionals, which should include details of your care and support. You should also be able to have reviews of your epilepsy 

Your specialist should “develop an individualised antiseizure medication treatment strategy with the person, and their family and carers if appropriate” NICE clinical guideline 

“Make a joint decision or plan about treatment or care, and agree together when this will be reviewed.” NICE clinical guideline 

See our page for further information on your care plan/review.

You have a right to access your own health records

“You have the right of access to your own health records.” Handbook to the NHS Constitution 
 
“The NHS pledges to share with you any correspondence sent between clinicians about your care.” Handbook to the NHS Constitution 

Since 2016, your GP has been able to give you electronic access to your own GP records.  If, for some reason, you are unable to access your records, you can write to your GP to ask to see them.

Your doctors might already copy you in on letters (such as letters after your appointments or referral letters), or you can ask them to if they don’t already do this. Being able to see your health records might help you to understand more about your health. It might also help when making decisions about your healthcare. Although you have a legal right to access your health records, sometimes you may be charged for this.

The NHS Constitution says that all confidential information in healthcare records must be kept safe and secure, and only used appropriately. It also means that health records are shared appropriately with professionals who might be involved in your care.   

For more information visit:
nhs.uk/nhs-services/gps/using-online-services

You have a right to access NHS dental care

“The NHS will provide any clinically necessary treatment needed to keep your mouth, teeth and gums healthy and free of pain.” nhs.uk/nhs-services/dentists

Anyone whose dentist thinks they need dental treatment that is clinically necessary, has the right to have this treatment done on the NHS.

You may have to pay a charge for your dental treatment and there are three bands of charges, but for some people, such as those on a low income, NHS dental treatment is free.

You should be informed about the treatment options and your dentist must make clear what will be paid for by the NHS and what you must pay for privately. 

Find a dental surgery that’s convenient for you and contact them to see what appointments are available. If you cannot find a dentist accepting NHS patients, contact your local integrated care board (ICB). See below.

If you are unhappy with the service your dentist is providing, you can complain to your dental practice manager or to your ICB. See below.

For more about NHS dental treatment visit nhs.uk/nhs-services/dentists
 

You are entitled to free prescriptions

You are entitled to free prescriptions for your anti-seizure medication (ASM) and for any other prescriptions you have. This is referred to as ‘medical exemption’ from paying prescription charges.

To apply for a medical exemption certificate, ask your GP or doctor for an application form. This needs to be signed by your GP or hospital doctor. 

The certificate lasts for five years and will need to be renewed every five years until your 60th birthday, when prescriptions are free anyway.

A medical exemption certificate form is not needed in Scotland, Wales and Northern Ireland as all prescriptions are free in these countries.

You and your carer, if you have one, are entitled to ask for a health and social care assessment. You may both be entitled to welfare benefits

You can ask your local social services for a health and social care assessment (sometimes called a ‘needs assessment’) to see if you are eligible for help with care or support. This assessment looks at what difficulties or challenges you have due to your condition, and what help or support might be useful to overcome these. 

Under the Care Act 2014, local authorities in England have a duty to provide assessments to people who need them and produce a care and support plan where necessary. Scotland, Wales, and Northern Ireland all have their own legislation.

See our page for further information on health and social care assessment/benefits.

You have a right to be treated with dignity and respect and to not be discriminated against

“You have the right to be treated with dignity and respect, in accordance with your human rights.” NHS Constitution 
 
“You have the right not to be unlawfully discriminated against in the provision of NHS services including on grounds of gender, race, disability, age, sexual orientation, religion, belief, gender reassignment, pregnancy and maternity or marital or civil partnership status.” NHS Constitution

As well as the above rights, and professional codes in NHS services, the Equality Act 2010 protects people from discrimination, including on the basis of disability. Under the Equality Act, someone has a disability if they have: 
“a physical or mental impairment which has a substantial and long-term adverse effect on the ability to carry out normal day-to-day activities”. 

Epilepsy is a physical, long-term condition. People with epilepsy are protected under the Equality Act even if their seizures are controlled or if they don’t consider themselves to be ‘disabled’.

The Act covers healthcare and also education, employment, and access to goods and services, such as shops, banks and public transport. Under the Equality Act 2010, you do not have to disclose that you have a disability or that you are a carer for someone who does. However, if you do tell people this, for example an employer, they can make sure they treat you fairly, and avoid various different types of discrimination.

For more information visit:
equalityhumanrights.com/en/advice-and-guidance/equality-act-guidance

You have a right to complain about NHS services or treatment

“You have the right to have any complaint you make about NHS services acknowledged within three working days and to have it properly investigated......to be kept informed of progress, and to know the outcome of the complaint”. NHS Constitution 

It may be quicker and less stressful for you to resolve any issues by speaking to the individual involved or to a manager related to the service.

If you do want to make a complaint about any NHS treatment or service, you can make your complaint to the NHS service involved (eg the hospital, GP practice, or dentist). Or you can complain to the organisation that arranged the service – the Integrated Care Board (ICB) for secondary care such as hospitals, or NHS England for primary care such as GPs or dentists.

You cannot complain to both the service provider and the organisation that arranged the service.

You can ask for help in making a complaint from the Complaints Advocacy Service or from the hospital’s Patient Advice and Liaison Service (PALS). If you are not happy with how your complaint is resolved, you can take it to the Parliamentary and Health Service Ombudsman.

If your complaint is about public health services (such as services that aim to prevent disease etc) or about services provided through local authorities or social care, you should raise this directly with either the local service provider, or the local authority, in the first instance. If, you are not happy with the outcome of your complaint, you can complain to the Local Government and Social Care Ombudsman.

The NHS website has more information about the NHS complaints procedure. 

You have responsibilities as well as rights

Along with your rights to services from the NHS, you have some responsibilities to the NHS too. These include the following:

• “please recognise that you can make a significant contribution to your own, and your family’s, good health and wellbeing, and take personal responsibility for it;
• please register with a GP practice – the main point of access to NHS care as commissioned by NHS bodies;
• please treat NHS staff and other patients with respect and recognise that violence or the causing of nuisance of disturbance on NHS premises could result in prosecution;
• please provide accurate information about your health, condition and status;
• please keep appointments, or cancel within reasonable time. Receiving treatment within the maximum waiting times may be compromised unless you do;
• please follow the course of treatment which you have agreed, and talk to your clinician if you find this difficult; 
• please participate in important public health programmes such as vaccinations;
• please ensure that those closest to you are aware of your wishes about organ donation; and
• please give feedback – both positive and negative – about your experiences and the treatment and care you have received, including any adverse reactions you may have had”. Handbook to the NHS Constitution