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Coronavirus and neurology: frequently asked questions

Information for patients

Frequently asked questions

Please see some answers to common questions we have received during the coronavirus (COVID-19) pandemic.

  • I am worried that I might have coronavirus (COVID-19)

    Please call NHS 111 for advice.

  • I am unsure if my neurological condition increases my risk from coronavirus (COVID-19)

    Neurological conditions and their treatment may affect susceptibility to COVID-19 in a number of different ways. Most of the conditions or treatments that increase susceptibility to COVID-19 are those that suppress the immune system.

    Additionally, since COVID-19 is a disease of the lungs and airways, any condition that has affected swallowing or breathing might increase the severity of COVID-19 infection.

    A combination of risk factors will increase the chance of experiencing a severe form of COVID-19 infection. The greater the risk of experiencing a severe form of COVID-19, the more strongly we recommend social distancing. For individuals at the highest overall risk, we recommend self-isolation.

    For more information, visit the COVID-19 guidance page on the Association of British Neurologists website.

    Patients who have been identified as vulnerable by the NHS can register to get help, including with medication and food, by visiting the help for vulnerable people page on the gov.uk website

    If you are unsure about appropriate measures that you should take (for example, social distancing or shielding) then please get in touch via email or telephone.

    Email: gst-tr.neurocovid-19gstt@nhs.net

    Tel: 020 7188 8883

  • I am on medication prescribed by your team and I am not sure if I should stop taking them

    We strongly recommend continuing all medications as prescribed by your neurologist, unless advised otherwise.

  • How is the multiple sclerosis service affected and where can I find the most up to date advice?

    We are no longer able to offer routine face-to-face appointments, we are offering telephone consultations where possible and for urgent issues. 

    If you are a patient and need any neurology specific clinical advice, please email gst-tr.neurocovid-19gstt@nhs.net.

    Visit our multiple scelrosis service page if you need to contact an MS Nurse.

    Routine MRI scans and most blood monitoring tests have been suspended.  

    We recommend that you continue with your current MS therapy, however Cladribine and Ocrelizumab treatments are being delayed.

    If you are expecting treatment via Guy's and St Thomas' or King's and have not heard, please contact us.

    Email: gst-tr.neurologyadmin@nhs.net 

    Tel: 020 7188 8883

    Some patients with MS are considered highly vulnerable (those with breathing or swallowing problems, and people within three months of Alemtuzumab or Cladribine treatment, or following HSCT). Please contact your GP or us if you have not received information and believe you are in this category.

    Guidance may alter over time, please do look at the NHS and MS Society websites which are being regularly updated.

    Neuromyelitis Optica

    We recommend that people with NMO continue their regular treatment (Rituximab infusions may be paused briefly), people on combinations of immunosupressant drugs may be within the highly vulnerable category.

    If you have any concern about your health status or treatment, please contact us.

  • How is the epilepsy service affected and where can I find the most up to date advice?

    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 gst-tr.epilepsycovid-19@nhs.net 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 gst-tr.neurologyadmin@nhs.net.

    By phone:

    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.

    Epilepsy medication

    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.

  • How is the movement disorders service affected and where can I find the most up-to date information?

    As a consequence of COVID-19, we have a reduced staff levels and we are not running any to face-to-face clinics. We are hoping to continue to run telephone clinics.

    Our Parkinson's disease CNS will no longer be able to respond directly to queries.

    If you are a patient and you feel you need urgent advice please call your GP or use the NHS 111 online service. If you do not have internet access, call NHS 111. For a medical emergency dial 999.

    If you are a patient and need any neurology specific clinical advice, Monday-Friday, 9am-4.30pm, please call the department on 020 7188 8883 (or other designated number) or email gst-tr.neurocovid-19gstt@nhs.net.

    If you need to speak to us, visit the zesty website to book an appointment for a neurologist to call you. Please only use this service if you do not have access to email. This service is only available to existing patients and is not suitable for new referrals.

    The Parkinson's UK free, confidential helpline remains open and available to people with Parkinson's and their families on 0808 800 0303.

    Visit the Parkinson's UK website for useful information about coronavirus.

    Helpline Care Navigators (HCNs) from the PSP Association are available for people with PSP and CBD, should you want to speak to someone or need information.

    The helpline is open Monday-Friday, 9am-5pm on 0300 0110 122. Helpline volunteers also provide after-hours support on Monday, Wednesday and Friday evenings from 7-9pm.

  • How is the headache service affected?

    Our specialist nurses are being redeployed outside of the service and will no longer be able to respond to patient queries at this time. 

    Currently greater occipital nerve (GON) blocks and botox injections are limited to urgent cases only.

    For GPs:

    • We will be able to respond to GP queries through the e-RS advice and guidance service and Consultant Connect.
    • For up to date headache pathway advice documents, GPs can email gst-tr.neurologyadmin@nhs.net and they will be provided on request.

    If you are a patient and you feel you need urgent advice please call your GP or use the NHS 111 online service. If you do not have internet access, call NHS 111. For a medical emergency dial 999.

    If you are a patient and need any neurology specific clinical advice, Monday-Friday, 9am-4.30pm, please call the department on 020 7188 8883 (or other designated number) or email gst-tr.neurocovid-19gstt@nhs.net.

  • I have an appointment soon and I have not heard from you

    We are attempting to contact all patients in advance of your appointment. If you haven't heard from us and your appointment is less than three days away please contact us.

    Please do not come to the hospital unless you have spoken to us and have been told specifically that you should.

    Email: gst-tr.neurologyadmin@nhs.net 

    Tel: 020 7188 8883

  • I have symptoms that I am worried about

    If the symptoms are related to the neurological condition for which we are seeing and you need specific clinical advice from our team please contact us.

    Email: gst-tr.neurocovid-19gstt@nhs.net

    Tel: 020 7188 8883

  • My medication is running out and I need a prescription

    If the medication is usually prescribed by your GP contact the surgery. If we usually prescribe your medication, please contact us (please use email unless your request is urgent).

    Email: gst-tr.neurocovid-19gstt@nhs.net

    Tel: 020 7188 8883