Mapping the Threads: Building a Joined-Up Epilepsy Care Team in the UK

Epilepsy care in the UK is often described as a pathway, but most people experience it as a set of relationships. A GP may start the conversation, an epilepsy specialist nurse may stabilise treatment, a neurologist may review the diagnosis, and a pharmacist may notice an interaction that nobody else has seen. When those relationships are not connected, appointments can feel like starting again. A personal EpiNet—a simple map of who does what and how information travels—can make care feel more coherent.

A network, not a hierarchy

It helps to think of the care team as a network rather than a ladder. The GP is usually the long-term anchor: repeat prescriptions, annual reviews, referrals and general health. The epilepsy specialist nurse is often the most practical point of contact for medication changes, seizure diaries and safety advice, although availability varies across the UK. The neurologist, whether general or epilepsy specialist, usually holds responsibility for diagnosis and complex treatment decisions. A pharmacist—community or hospital—can be invaluable for interactions, formulations, adherence and repeat prescription problems.

Other members matter too. Schools and colleges may involve a SENCO, a named member of staff and an individual healthcare plan; in England, an education, health and care plan may be relevant. Employers may offer occupational health support, reasonable adjustments and Access to Work. Specialist epilepsy centres can provide tertiary review for complex cases, including presurgical assessment. Midwives, learning disability teams, mental health services and social care may also be part of the picture.

A one-page care-team template

A useful template does not need to be elaborate. Keep it to one page, review it at least annually, and share it with the people who need it. For each person in your network, record:

• Name, role and organisation.
• Best contact route, including hours and whether email or phone is preferred.
• What this person handles—and what they do not.
• What they need from you, such as a seizure diary or medication list.
• Who else is copied into letters or messages.
• Date of last contact and next planned review.
• Any agreed actions and who is responsible for them.

At EpiNet UK, we suggest adding a short section headed 'If I cannot reach my named contact'. This might include the GP practice reception team, an out-of-hours service, an epilepsy specialist nurse voicemail, or a hospital switchboard. It is not a substitute for emergency advice, but it reduces the risk of being left without a next step.

Questions to ask at handover points

Handovers are where information is most likely to slip. Whether you are moving from hospital to community care, from paediatric to adult services, or from one GP practice to another, ask focused questions:

• Who is responsible for this decision, and what is the timescale?
• How and when will I be told the outcome?
• Which information will be shared, with whom, and with my consent?
• What should I do if my seizures change before the next appointment?
• Is this change temporary or permanent, and when will it be reviewed?
• Who should I contact if I cannot reach the named person?

It is reasonable to ask for the plan in writing, whether by letter, email or a note in your NHS App record. A brief written summary is often more useful than a rushed conversation at the end of an appointment.

When a referral or medication review stalls

Delay is common in UK services, and it is rarely anyone's fault in particular. Still, a stalled referral or medication review needs a calm, documented response. First, confirm that the referral was sent, including the date, destination and any reference number. Ask the GP practice care coordinator whether further information is needed. If you have a named epilepsy specialist nurse, contact that service and ask for an expected review date.

If a medication review has stalled, do not change doses on your own. Ask your GP or pharmacist for an interim safety check, particularly if you have had side effects, missed doses or new interactions. Request a written plan that states what is being reviewed, by whom and when. Keep a simple log of calls and letters. If reasonable attempts fail, NHS patient advice and complaints services can help you understand the local route. Escalation is not confrontation; it is part of keeping the network connected.

Keeping the map alive

A care team map is only useful if it is updated. Review it after any hospital admission, medication change, pregnancy, house move or change of GP. Share it at appointments and ask for it to be filed with your records. The aim is not to create more administration, but to reduce repetition and make sure that the right person has the right information at the right time. A joined-up EpiNet is built one named contact at a time.