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of everyone affected by epilepsy

1.3 Roles in primary care

Shared care guidelines are developed when sophisticated or complex treatments that were initiated in specialist care are then managed by a GP. Successful shared care arrangements enable the combination of the best of both primary and secondary care for the benefit of the patient, allowing the seamless transfer of patient care.

Epilepsy is not a condition that should just be managed solely in primary care, rather it occurs in conjunction with secondary and tertiary care services. The NICE and SIGN guidelines emphasise the importance of shared care in epilepsy management. Among other things they recommend that:1-2

  • the primary care team can provide key information to aid diagnosis, as the GP is often the first to suspect epilepsy and is in the best position to obtain a first-hand witness account and record the diagnostic features
  • all patients with epilepsy should be identified and basic demographic data recorded
  • once a suspected epileptic seizure has been reported, appropriate information such as ‘Epilepsy: an introduction’ (available at www.epilepsy.org.uk) should be provided to the patient. Printer friendly fact sheets are available
  • patients should be directed to Epilepsy Action’s Helpline (freephone: 0808 800 5050)
  • a referral to an epilepsy specialist should be considered as soon as possible
  • seizures should be monitored, with the aim of improving control by adjustment of medication or re-referral to hospital services.

The following practitioners have an essential role in the system of managed care for patients with epilepsy.

General Practitioner

Models of structured care suggested by the Clinical Standards Advisory Group (CSAG) over ten years ago recommended that epilepsy management in general practices are headed by a ‘lead GP’.3

Epilepsy specialists, epilepsy specialist nurses, psychologists, social workers, community learning disability nurses and counsellors are all useful contacts, if available in the region.

They would also be responsible for organising annual review and recall systems, audit training and continuing education.

GP with a Special Interest

The role of GPs with a Special Interest (GPwSI) in epilepsy4 is seen as a beneficial development in improving care for people with epilepsy and improving communication between primary and secondary care. They can act as a source of information about local services, have up-to-date information on the condition and support practices to achieve the GMS quality indicators. They can also provide clinical leadership for developing epilepsy services and lead the development of shared care services.4 As federations of practices develop and Clinical Commissioning Groups redesign services, it may be that some ‘Lead GPs’ may develop their role as a GP with a Special Interest in Epilepsy. Competencies for GPwSIs can be found on the Royal College of General Practitioners (RCGP) website (www.rcgp.org.uk).

Practice manager

The lead administrative role is usually taken on by the practice manager who is responsible for the updating of a register of patients with epilepsy, inviting them for review, ensuring that the required data are entered onto the computer and carrying out quality control. If the practice manager does not carry out this role, he or she will assign this responsibility.

Practice nurses

Practice nurses can be trained to carry out the routine review of patients with epilepsy. They will then be in an excellent position to identify people with epilepsy who may have unmet needs and then refer them for more appropriate care.

Epilepsy specialist nurses

The role of the epilepsy specialist nurse is to work between secondary and primary care as agreed locally by commissioners, and take a major role in providing epilepsy services. These nurses can provide more tailored advice and information about epilepsy for patients, and act as an interface between primary and secondary care.2 These include nurses known as Sapphire Nurses, who are initially funded by Epilepsy Action.

Research has demonstrated the potential benefits of epilepsy specialist nurses in reducing the length of hospital stay and increasing patient satisfaction.4 The role of the epilepsy specialist nurse will vary from area to area. Their aim is to provide:

  • support and information for the patient, their family or carers2
  • up-to-date information and advice on epilepsy to the epilepsy team2
  • a contact point for GPs seeking advice3
  • a conduit for fast-track referral to secondary care3
  • information about the strengths and weaknesses of the range of services in the local community (medical, statutory, voluntary) for GPs and hospital clinicians3
  • training for primary care nurses and voluntary organisations.3

Epilepsy specialist nurses are considered to be such a valuable resource for primary care that the NICE and SIGN guidelines recommend that all epilepsy care teams should include an epilepsy specialist nurse.1,2


Pharmacists may be employed by a GP practice. Since community pharmacists dispense medication regularly to the patient, they are usually the healthcare professional that sees the patient most frequently.

  • Pharmacists can conduct medication reviews (practice pharmacists) or Medicines Use Reviews (MUR) (community pharmacists)
  • They can assist with compliance difficulties.
  • They can assist with drug titration.
  • They can advise on drug interactions including over the counter and herbal medication.


1 National Institute for Health and Clinical Excellence (NICE), 2012. The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care. [CG137]. London: NICE.

2 Scottish Intercollegiate Guidelines Network (SIGN), 2003. Diagnosis and management of epilepsy in adults. A national clinical guideline. Edinburgh: SIGN.

3 Shorvon S, Kitson A, 2000. Clinical standards advisory group. Services for patients with epilepsy: a report of a CSAG committee.London: Department of Health.

4 Royal College of General Practitioners/Department of Health, 2003. Guidelines for the appointment of general practitioners with special interests in the delivery of clinical services: Epilepsy. [online] (Accessed 03/04/2012).

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