This page was originally published on 11 March 2020. This page was last updated on 28th May 2020. Recently updated sections are:

  • 'What happens if my DBS device battery needs changing?' section added
  • 'Are there any exercises I can do to help while waiting for my normal treatment appointments?' section added
  • Update about the GoodSam scheme in 'Where can I get support?' section
  • 'Will my routine appointments be cancelled or postponed?' section replaced with 'Do you have information on botulinum clinics reopening?' section

No doubt, like us, you are concerned about the current situation with Coronavirus - for yourselves, your families and friends, and the many members and supporters of Dystonia UK. Whilst the most up to date news will continue to come from the Government and National broadcasting, we at Dystonia UK will endeavour to post anything specific to dystonia we learn below.


Coronavirus Information

You can find current information and guidance for the UK below:


Dystonia and coronavirus

We are not able to give specific advice regarding Coronavirus or its implications for people with dystonia. We have reached out to our medical advisors and will update you with any relevant responses.

If you have any questions regarding your dystonia and coronavirus please speak to your primary medical team or you can also contact your local PALS (Patient advice and liaison service).

The BPNA (British Paediatric Neurology Association) has recently emphasised the importance that paediatric neurology services are still available to patients at this difficult time and that patients and their families should not hesitate to contact their doctor or specialist nurse if they have concerns.


Am I at increased risk from coronavirus?

For guidance on who is vulnerable and what is regarded as an underlying health condition, please see the government website

Association of British Neurologists: coronavirus/COVID-19 guidelines

On 22nd March 2020 the ABN (Association of British Neurologists) have released guidelines on COVID-19 aimed at people with neurological conditions, their doctors and carers. The guidance covers assessment of risk, which conditions leave people more at risk, immunosuppression, and advice relating to specific neurological disease groups. The recommendation from the Chief Medical Officer is that high risk patients self-isolate for 3 months.

Experts in neurological subspecialties have attempted to estimate the risk associated with COVID-19 from each neurological condition or its treatment. It is difficult to accurately assess risk for every condition. The risk has been subdivided into three levels; low, moderate, and high:

  • We recommend social distancing for all people with any neurological condition, their carers and family.
  • We recommend self-isolation only for people in the high risk category.
  • People with a neurological condition with low or moderate risk might be considered high risk if they have additional risk associated with other conditions affecting the lungs, heart, kidneys etc.
  • Frailty is a risk factor for a poor response to treatment for COVID-19. People with neurological conditions resulting in frailty, or who are frail as a result of age or other conditions are at increased risk from COVID-19.

It is important to emphasise that we do not expect most patients in the high-risk groups to suffer severe complications of the virus. Treatments for complex COVID-19 are under development; however, the best advice for all people, and particularly for those at increased risk of complications, is to reduce or avoid the risk of catching the virus.

The guidance contains the following advice regarding Movement Disorders (for example, Parkinson’s disease, so-called atypical parkinsonism, dystonia). These conditions do not in themselves render the patient susceptible to infection, however disability, especially bulbar and respiratory failure, or the presence of co-morbidities increase the risk from COVID-19. Any disorder affecting swallowing or respiratory function may have higher risk. Risk may also be increased for patients in care homes, patients with significantly impaired bulbar or respiratory function, patients with additional cognitive impairment which may limit their ability to understand and follow healthcare advice.

The advice and guidance is developing from day to day and so the guidance from the ABN will be updated as new information becomes available. We will endeavour to pass on these updates to you.

Comments from our medical advisors

Professor Tom Warner has been clear that dystonia does not affect the immune system. The risk factors for covid-19 and dystonia are therefore surrounding other factors. He advised that: 

  • Focal dystonia is unlikely to have any impact on whether people get sicker or are at higher risk from covid-19 as most people are otherwise fit and active with focal dystonia.
  • Laryngeal dysphonia is also unlikely to have any impact on whether people get sicker or are at higher risk from covid-19 unless it affects the swallow.
  • Older age is a risk factor. 

He commented that “The only cases of dystonia who will be more vulnerable will be those with severe and generalized forms which limit mobility or secondary cases where there are additional features including swallowing problems. These people would be expected to isolate and reduce contact to minimum in the UK to reduce risk of picking up covid infection.”

BPNA

The BPNA (British Paediatric Neurology Association) have produced guidance for medical professionals. The document also identifies specific high-risk groups who may potentially have a more severe infection if they get covid-19. Dystonia was not independently listed here.


I am at increased risk but have not been contacted to get additional support.

If your dystonia does put you at increased risk of coronavirus and you have not been sent a letter from the NHS or contacted by your GP or hospital clinician you can register yourself here. You must click 'Yes' on the question 'Do you have a medical condition that makes you extremely vulnerable to coronavirus? for the registration to go through.


Do you have information on botulinum clinics reopening?

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 on what you might be able to expect as appointments resume: Information about the reopening of botulinum toxin clinics for patients with dystonia


What can I do if my routine botulinum appointment has been cancelled?

On the 2nd April we hosted a presentation with our medical advisor, Dr. Marie-Helene Marion, on the topic. You can watch the video below or view or print a general summary of the presentation and question & answer session here: Notes_on_botulinum_toxin_presentation_with_Dr._Marion.pdf



You can also watch the full length live stream of the video on our Facebook page here.


What happens if my DBS device battery needs changing?

The NHS released a 'Clinical guide to surgical prioritisation during the coronavirus pandemic' in which surgery for a battery change for deep brain stimulators is listed as 'Urgent' and should be treated within 72 hours.

If you are worried about anything relating to your DBS device please speak to your primary medical team. You can also contact your local PALS (Patient advice and liaison service).

If you have a Medtronic device you can also call their dedicated helpline +44 (0) 1923 205101 (Monday-Friday 9am-4pm).


Are there any exercises I can do to help while waiting for my normal treatment appointments?

We would recommend watching our webinar on physiotherapy that was filmed as part of the 'Reach Out, Reach All' series. The webinar explores the use of physiotherapy and pain management techniques with presentations from Richmond Stace, specialist pain physio and coach and Sally Glover, physiotherapist and botulinum toxin injector based at the Queen Elizabeth in Birmingham followed by a question and answer session. The session was planned to support patients who may be experiencing a prolonged gap in botulinum toxin appointments, however, the content is designed to be beneficial for dystonia patients at all times.

You can watch the video here:

There is also a worksheet with some massages here: Facial_Massage_QEHB_-_20.04.20.pdf


Where can I get support?

All group meetings are postponed until further notice, however, we would like to invite you to take this opportunity to join our virtual groups on Facebook and to reach out to people near you that you may not have met through your normal group meetings. There are individual pages for each UK region and you can find the groups here.

You can also follow us on Twitter or Instagram for latest updates on what other supporters and members are doing.

Our phone lines are currently closed, however, you can still leave a message by calling 0207 793 3651 or by sending your enquiries via email at [email protected] and someone will get back to you as soon as possible.

There are lots of ways to help yourself from home during the pandemic and especially during the lockdown period. Below we have listed websites with particular support for people with dystonia:

If you are aged 70 or over with dystonia, registered as disabled or in the 'extremely vulnerable' to covid-19 and have been sent a letter asking you to shield you can get help with collecting shopping, medication or other essential supplies, or if just want a telephone ‘check in and chat’ to help prevent loneliness. For any of these please call a volunteer signed up to the GoodSam Scheme on 0808 196 3646 (8am to 8pm) 7 days a week.


Other useful links and information: