Due to the current circumstances, all nurse specialist clinics have been postponed. Appointments with your neurologist will be converted to a telephone clinic where possible or postponed.
We still offer a first seizure service for GPs and emergency service (A&E) referrals. The Epilepsy Society website has useful up-to-date information on coronavirus.
Patients with relatively well-controlled seizures
As long as no worsening of your seizures occurs, our advice is to continue with the current medication until your scheduled follow up appointment with your specialist. Please, do not stop any medication unless specifically told to do so by your clinical team. It is best to stay at home, minimise the alcohol you drink (if any) and sleep as well as you can. As most of you already know, good sleep is extremely important to keep seizures under control. The goal is to maintain good seizure control during the pandemic and avoid coming to the hospital for treatment of breakthrough seizures.
Patients with the following types of symptoms or conditions may need to contact us
- Frequent seizures or comorbidities that make you particularly vulnerable to (coronavirus) COVID-19.
- Generalised convulsions (grand mal seizures) that are not well-controlled. For instance, when they occur more frequently than once per month, or if they occur in clusters (groups) over a few days, or when you may have more than one grand mal on the same day.
- When you have suffered (any time in the past) a number of grand mal seizures on the same day, necessitating treatment at the emergency department. Such serial convulsions may result in convulsive status, which is a very serious, actually life threatening condition. Please keep in mind that convulsive status may sometimes follow an unusual clustering of 'small' seizures, such as epileptic jolts or jerks or vacant spells, or the focal seizures you usually have and are specific for each on (rising sensation in the stomach, disturbance of your speech etc), so you should contact us in this case too.
- Sudden worsening of your seizures, more frequent or more severe than usual. For instance this may be due to a concurrent infection unrelated to COVID-19, such as urinary tract infection.
- New symptoms that are possibly side-effects from a recently added anti-epileptic drug.
- Queries regarding important investigations or referrals (for instance to neurosurgery) or for an urgent scan. You should be aware of such circumstances from your last consultation with your specialist / medical team.
How to contact the epilepsy team
If you need urgent advice within 1-2 hours (for example when you have more than one convulsion on the same day) please email at firstname.lastname@example.org in the first instance. Please note that if you have not heard from us within 2 hours or if you have serious concerns about your health please call 999.
Please include in your email to us:
- Your hospital number. This will be in all clinical letters you have already received by your medical team. This will help us to look up your hospital records and give the best possible advice as soon as possible (don't forget that not all of you are known to the doctor who will reply).
- A brief description of what the problem is
- A contact number for us to call you back on
Please be aware that the doctor who responds to you may not be the doctor you are being reviewed by. Emails allow us to prioritise our response so we can support those in urgent need.
Book in for a telephone appointment:
For less urgent clinical issues, for example recent worsening of seizures, possible side effects etc, please book your epilepsy telephone appointment and an epilepsy specialist will call you back.
You should be able to book an appointment within a few days. These telephone appointments are for managing clinical issues. Please do not use it for issues that can wait until the end of this pandemic and/or will be addressed by your regular neurology consultant or medical team.
This service is only available for existing patients who are under general neurology that we have already seen in the clinic. If you have not been seen in the clinic before you will not be called back, so please do not use this service.
Please also do not use this for admin queries, such as outcome of recent referrals, appointments, non-urgent medical reports etc. For admin queries, please email us at email@example.com.
If you do not have access to email or access to the website to book an appointment, call 020 7188 8883. Please note this phone line is not answered by a clinician – it will be answered by an administrator who will then contact the clinician as necessary. If you are able to email or book an appointment in online please try and do this where possible to ensure the phone lines can be open for those who need it.
If your medication is running out please contact your GP if they usually prescribe it. If it is Guy's and St Thomas' that usually prescribe your medication, please contact us by email or by phone as detailed above.