The NHS is now resuming some outpatient services which have been closed due to the coronavirus (COVID-19) pandemic on a phased basis. This will include the reopening of some botulinum toxin clinics for dystonia patients in some areas.

Dystonia UK has contributed to the BNN’s (British Neurotoxin Network) guidance for clinicians on reopening clinics and participated in a webinar on managing botulinum toxin services through COVID-19 with over 250 clinicians. Following this we have provided some useful information below on what you might be able to expect as appointments resume.

Each clinic has its own local guidelines to follow. These will differ depending on a number of factors so not all clinics will open at the same time or in the same way. Therefore, the comments below will not necessarily apply to every clinic. Please ensure you follow the guidance provided by your clinical team.

We are not able to answer individual medical enquiries regarding your dystonia and botulinum toxin injections. If you have any questions of this nature, please pass these onto your primary medical team.

When will my clinic resume?

We recommend that for the latest information you contact your clinic if they have not contacted you. Your clinic will only open when it is safe and appropriate to do so.

Will the regularity of appointments change?

Your clinician will work with you to determine the best course of treatment for you going forwards. It is possible there may still be longer gaps in treatment than normal while there are still pressures in the NHS and while services return to normal.

How quickly will I be seen once my clinic reopens?

All of the clinicians we have interacted with are very keen to limit the time you have to manage without your normal injections and they will invite you in as soon as they can whilst adhering to government guidelines. Your clinic will only invite you in when it is safe and appropriate to do so.

Should I arrive early for my appointment?

To comply with social distancing measures you may not be allowed into the building until your exact appointment time. We suggest you plan to arrive on time, and are not early or late unless otherwise directed by your clinic.

Will there be anything different about the waiting room?

The waiting room will have social distancing measures in place. This may mean there are fewer chairs or that you are asked to wait outside before your exact appointment time. You may be asked to use hand sanitiser gel or to wash your hands when you arrive.

Do I need to wear a mask and gloves?

We recommend you follow the government and clinic advice on whether to wear any PPE (personal protective equipment) such as masks or gloves.

Will anything be different about my appointment?

Your clinician may phone you before the appointment to discuss your needs including whether you have seen a deterioration or improvement in your symptoms. They may ask you to complete some questions or write some feedback down before or during your appointment to help with their assessments.

There could be some other differences to your normal appointment to help keep you and your clinician safe. These will be communicated to you when your appointment is scheduled or in a pre-appointment phone call. For example:

  • Your appointment may last a little longer than normal so that new systems can be implemented. E.g. Cleaning the room.

  • You might be asked to talk while turned away from your clinician.

  • Your clinician might do your injection while standing behind you.

  • If you normally have your injections out of your wheelchair, you may be asked to remain in it for the duration of the appointment.

How do I get to my appointment?

While social distancing measures are still in place we advise you avoid public transport where possible and you may need to allow extra time to make your journey. You may be able to get a referral from your GP, local authority or hospital for transport to and from the hospital through the GoodSam scheme.

Can I bring someone with me to my appointment?

If you need assistance with travel, in line with government guidelines, it is best that you travel with a member of your household where possible. We also expect most clinics will recommend that you attend the actual appointment alone unless you need your carer with you.

What do I do if I am apprehensive about attending my appointment?

We recommend reading any information your clinic has sent you about your appointment and if following that you are apprehensive or have questions that you contact your clinic.

How long will I have to wait if I cancel my appointment?

This will depend on clinic to clinic. If you are not able to attend your appointment, we recommend that you inform the clinic as soon as possible. 

How do I cope without botulinum toxin injections while I wait for my appointment?

We recommend watching two recent webinars we hosted as part of our ‘Reach Out, Reach All’ series:

  • A presentation by Dr. Marion ‘Dystonia during the pandemic; How to cope with no botulinum toxin injections and isolation’
  • Presentations by Sally Glover, physiotherapist, and Richmond Stace, specialist pain physio and coach on ‘Taking Control of Your Dystonia – A physiotherapy focus’

They are both on our website:
There are also other useful videos on the following websites: Info Dystonia, Dystonia Europe and the National Spasmodic Dysphonia Association.

Will the injections put me more at risk of COVID-19?

Experts do not think the injections put you more at risk of COVID-19. They also do not think that having had coronavirus will affect your injections.

If you have any concerns about your injections and coronavirus you should discuss these with your clinician.

Coronavirus restrictions

It is especially important that you follow the advice of the government and your clinic on coronavirus. When attending an appointment:

  • Limit your contact with other people
  • Keep your distance (2 metres apart where possible)
  • Wash your hands regularly

Do not leave home and attend your appointment if you or anyone in your household has coronavirus symptoms.

Download the above information as a printable PDF here.

Published: 28th May 2020