This guidance is based on information from the lead neurologists at the London UCL/UCLH and Sheffield Ataxia Centres. We are monitoring the situation and will update our guidance accordingly.

Covid-19 is a new virus and there is much that we do not know/understand about it, however we do know that people with ataxia can experience a transitory worsening in their ataxia symptoms (balance, coordination, vision, speech, etc.) when they are suffering from any infections that cause flu-like symptoms or pneumonia. Therefore, we would expect that if a patient with ataxia develops symptoms from the coronavirus infection, their symptoms of ataxia might worsen while the flu-like symptoms or pneumonia persist.

People with long term neurological conditions such as ataxia are classified as vulnerable in terms of Covid-19 according to the guidelines set out by Public Health England. This does not mean that people with ataxia are more likely to acquire this infection, but would be expected to present with more severe symptoms due to a worsening of their underlying health problems. Information and advice is constantly changing, and we would recommend regularly reviewing the government website for updates on social distancing for vulnerable people. Find out more here.

Public Health England further outlines that people with a number of other health conditions should be classified as being extremely vulnerable, including people post organ transplant, certain cancer diagnoses, those who are immunosuppressed, or suffering from severe respiratory conditions such as COPD. People in this category should expect to be notified by the NHS from March 23 with specific instructions to stay at home and not leave for any reason for at least the next 12 weeks. We would suggest that anyone with an ataxia diagnosis plus any of the below should also be included in this category and follow the same shielding measures as this extremely vulnerable group:

- Over 70 years of age with ataxia

- Ataxia with any additional comorbidites including: diabetes, cardiac complications such as cardiomyopathy, or respiratory complications

- Ataxia with significantly reduced mobility i.e. wheelchair bound or living in a care home

- Ataxia with bulbar weakness i.e. difficulties swallowing

- Ataxia taking immunosuppressants for comorbidities

- Ataxia with pregnancy plus underlying cardiac complications

- Autoimmune ataxia receiving mycophenolate ** Please see the below additional advice for this patient group

If you think you are in this extremely vulnerable group you are strongly advised to shield yourself. For advice on shielding for the extremely vulnerable see the relevant government advice for:

England

Scotland

Wales

Northern Ireland

If you believe you fall into one of the above categories and have not been notified by the NHS via text or mail, you should contact your GP to discuss this further (using the information in this statement for guidance) and register on this site which will enable you to be recorded as extremely vulnerable and entitle you to receive support e.g. food deliveries. 

The WHO has also recommended vigilance in treating Vitamin D insufficiency, and we would therefore advise all ataxia patients to supplement with Vitamin D 1000 iu for the duration of this outbreak.

There has been concern about the use of ibuprofen with Covid-19. There is currently no strong evidence that ibuprofen can make Covid-19 worse. However, until we have more information, we would suggest if you have a fever to take paracetamol to treat the symptoms of coronavirus, unless your doctor has told you paracetamol is not suitable for you. If you are already taking ibuprofen or another non-steroidal anti-inflammatory drug (NSAID) or oral steroid on the advice of a doctor, do not stop taking it without checking first.

** Advice for people with autoimmune ataxia receiving mycophenolate **

  - Please continue to take your treatment if you feel well

  - If you have an appointment for a review or blood test and you feel unwell with a temperature or a new continuous cough or shortness of breath, please do not go to the hospital. Call 111 for advice

  - Do not stop taking your medication without speaking to your ataxia specialist team.

Advice for anyone admitted to hospital with Covid-19

We recommend that anyone with ataxia that is admitted to hospital with Covid-19 takes a written list of information related to their ataxia, including:

  • A statement saying that you have ataxia, e.g. a copy of your latest clinic letter
  • Any additional care needs you require (e.g. help with mobility or personal care)
  • A list of any medication you are taking, including dose and frequency
  • Neurologist details, and details for any other specialists involved in your care e.g. cardiologist, respiratory specialist
  • If you have an advanced care plan, please include that.

For more advice see the Webinar recording and Q&A session from 15 April 2020 with Prof Paola Giunti and Suzanne Booth from the London UCL/UCLH Ataxia Centre.

Disclaimer
Please understand that this advice is given on the basis of the limited information provided, and that neither Ataxia UK nor the Medical Advisor can accept responsibility for any actions arising from it.