Care and treatment: your rights and choices
Our document, Care and treatment: your rights and choices explains your rights and the services that you can expect as someone with epilepsy.
In some cases, it lists your ‘rights’ – things that you are entitled to by law. In this case we say ‘you have a right to…’ In other cases, you may not have a legal right, but these are recommendations. In this case we say ‘you should…’
Terms used
Primary care – this means health services such as the GP or pharmacy. This is ‘primary care’ because it is usually the first place you will go to for help with anything medical.
Secondary care/ secondary services – this covers health services such as local hospitals and clinics, where you would see someone more specialised than the GP or pharmacist, such as a neurologist. This is ‘secondary care’ because you usually have to be referred by your GP. It also includes A&E departments.
Tertiary care/ tertiary services – this refers to specialist hospitals or units that focus on specific care for different conditions. For example, if someone is being considered for epilepsy surgery, they might be seen in tertiary care. You have to be referred to tertiary care from either primary or secondary care.
Where we refer to the NHS Constitution or the Information Strategy, this is not specific to your epilepsy, but applies to everyone. Where we refer to the NICE clinical guideline on epilepsy, this is specific to your epilepsy and its management.
Notes
This document includes information from the NHS Constitution, the NICE* clinical guideline on epilepsy the Equality Act 2010 and the Information strategy ‘The power of information'.
* NICE is the National Institute for Health and Clinical Excellence.
Find out more about the documents and organisations that have provided much of the basis for this document.
Content reviewed January 2019
Your responsibilities
Care and treatment: your rights and choices says: ‘You have responsibilities as well as rights.’ Along with your rights to services from the NHS, you have some responsibilities to the NHS too.
Early access to specialist diagnosis and care
Care and treatment: your rights and choices says: ‘After a suspected seizure, you should be seen by an epilepsy specialist within two weeks.’ This is recommended (and not a legal right) so that suspected epilepsy can be diagnosed and appropriate management can be considered without delay.
Referral to tertiary care
Care and treatment: your rights and choices says: ‘If your seizures are not controlled, or your diagnosis is not clear, you should be referred to tertiary care.’ This is so that you can be seen by someone with expertise in epilepsy, and have access to investigations to help you. This is a recommendation, not a legal right.
Appropriate treatment and consistent medication
Care and treatment: your rights and choices says: ‘You have a right to appropriate treatment options, and should have a consistent supply of medication.’ Your specialist should work out what is the best treatment for you, and you should have access to the drugs that they recommend.
NHS dental care and free prescriptions
Care and treatment: your rights and choices says: ‘You are entitled to NHS dental care and free prescriptions', for your anti-epileptic drugs and any other prescriptions you have.
Involvement in your own healthcare
Care and treatment: your rights and choices says: ‘You have a right to be involved in your healthcare and you should have enough information, and appropriate support, so that you can make informed decisions about your health and be an active participant in all decisions about your epilepsy treatment and management.’
Comprehensive care plan
Care and treatment: your rights and choices says: ‘You should have a comprehensive care plan agreed with your healthcare professionals, which should include both medical and lifestyle issues. You should also have an annual review of your epilepsy.’
Choice of care
Care and treatment: your rights and choices says: ‘You have a right to choose who provides your care.’ You can choose which hospital to go to, and can ask for a second opinion about your health condition or treatment.
Access to health records
Care and treatment: your rights and choices says: ‘You have a right to access your own health records.’ To help you understand more about your health, you can ask to see your health records.
Health and social care assessment
Care and treatment: your rights and choices says: "You are entitled to ask for a health and social care assessment". Unpaid carers are also entitled to their own assessment and people with epilepsy, and their carers, may be entitled to welfare benefits.
Freedom from discrimination
Care and treatment: your rights and choices says: ‘You have a right to be treated with dignity and respect and to not be discriminated against.’ People with epilepsy are protected under the Equality Act 2010, which makes discrimination unlawful. This includes discrimination on the basis of disability.
The right to complain
Care and treatment: your rights and choices says: ‘You have a right to complain about services or treatment.’ There are various procedures for doing this, and for taking your complaint further if it is not resolved.
The development of care and treatment: your rights and choices
Sources used to develop Care and treatment: your rights and choices.
Epilepsy Care Pathway
A clear care pathway to show you what to do from the first seizure to referrals and reviews.
Get a copy of Care and treatment: your rights and choices
Download Care and treatment: your rights and choices.
Alternatively, our quick guide Care and treatment: your rights and choices summarises the key points.