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.
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 the extremely vulnerable group:
– Over 70 years of age
– Aadditional comorbidites including: diabetes, cardiac conditions such as cardiomyopathy, or respiratory conditions such as chronic lung diseases
– Wheelchair bound or living in a care home
– On medication such as drugs that suppress the immune system
– Autoimmune ataxia receiving mycophenolate ** Please see the below additional advice for this patient group
For advice on shielding for the extremely vulnerable see the relevant government advice for:
There may also be areas with local restrictions. For details of local restrictions please see the relevant government advice for:
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.
** 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 or your GP.
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 latest Webinar recording and Q&A session with Prof Paola Giunti and Suzanne Booth from the London UCL/UCLH Ataxia Centre.
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.
Updated on 08/10/2020