Referral to tertiary care
One of the 12 statements in our document, Care and treatment: your rights and choices, covering the rights and services that a person with epilepsy can expect.
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.
The NICE clinical guideline says:
"If seizures are not controlled and/or there is diagnostic uncertainty or treatment failure, children, young people and adults should be referred to tertiary services soon for further assessment."
‘Soon’ means being seen within four weeks.
You should be referred to tertiary services or 'tertiary care' if:
- your seizures are not fully controlled (that is, you are still having seizures)
- your medication is not controlling your seizures, or
- there is the possibility that your diagnosis might not be right.
Tertiary care is provided by specialist hospitals or units that focus on specific care for different conditions. You have to be referred to these services by either your GP (primary care) or your local hospital or clinic (secondary care).
In tertiary care you should be seen by someone with expertise in epilepsy. Tertiary care might include:
- reviewing your diagnosis to see what sort of epilepsy and seizures you have
- looking at what treatment you have already tried and how it worked for you
- planning 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 seizures), using the best treatment option for you, with the least impact on your life.
Information produced: January 2019
Our document, Care and treatment: your rights and choices explains your rights and the services that you can expect as someone with epilepsy.
Managing your treatment is an important part of managing your epilepsy, and seeing whether your medication is working. This might include having a care plan, including a treatment plan.
The decision whether to start taking anti-epileptic drugs (AEDs) can be difficult, and there is a lot to think about. Here we look at the benefits and risks of taking, or not taking, AEDs.