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PSP & CBD and Coronavirus

We are aware that many of you will be concerned about the developing Coronavirus and how it might impact on you, your health and in particular, any care provision you or a loved one might receive.


PSP & CBD have not been specifically mentioned in Government guidance, but people over 65 and those with a medical illness have been identified as being more at risk.  PSP & CBD fit these criteria and so extra care does need to be taken.

On 22 March the Association of British Neurologists published advice for people living with neurological conditions.

The guidance from the Association of British Neurologists indicates any neurological condition that affects swallowing or breathing might increase the severity of COVID-19 infection, therefore the following precautions should be taken:

  • Social distancing is recommended for all people with any neurological condition, their carers and family.
  • Self-isolation is recommended for people in the high-risk category.

Read the guidance in full here

Please follow NHS advice to:

  • Wash your hands often with soap and water for at least 20 seconds. Please use an alcohol-based hand sanitiser if soap and water is not available
  • Cover your cough or sneeze with a tissue or a sleeve
  • Clean and disinfect objects and surfaces that you regularly touch at work and at home
  • Don’t touch your eyes, nose and mouth with unwashed hands
  • Avoid close contact with people who have active symptoms
  • Stay home if you start to experience symptoms and avoid close contact with vulnerable people

To keep up to date with the latest advice, please keep an eye on the Government website: www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public

For information, NHS advice states that the symptoms of coronavirus are:

  • a cough
  • a high temperature
  • shortness of breath

Please note that these symptoms do not necessarily mean that you have the illness. The symptoms are similar to other illnesses that are much more common, such as cold and flu.

Care contingency planning

Advice provided by a leading neurologist and Carers UK supports the importance of having a ‘Plan B’ in place for any care provision for yourself or a loved one, in case illness should strike. If you care for a loved one, now is the time to establish a network of friends and family who could step in to help should you become ill. If you have paid-for-care, contact your provider to discuss how your care plan will continue should you get ill or your regular carer has to isolate suddenly.

If you need some help in planning care contingency, please contact our Helpline on 0300 0110 122 or helpline@pspassociation.org.uk

Advice is also available from Carers UK, here.

Clinic appointments

Medical appointments, specifically those related to your PSP & CBD, should still be attended if you are well. Please make use of handwashing facilities on arrival for your appointment, at regular intervals and again before you depart. If you are experiencing any of the publicised symptoms or have come into contact with someone who has been ill, please call 111 for further guidance.

Local Group Meetings

As of Monday 16 March, all Local Group meetings are being suspended for a two-month period. This will mean a recommended break in Local Group meetings until at least June. We know this may be disappointing for members who look forward to the get-together, however, we do recommend keeping in contact with group members using phone, webchat and other technology. Further information on Local Group meetings will follow.

Family and Friends Day

The Family and Friends Day planned for May in Leeds has now been postponed. We hope to hold the event around July at the same venue. Further updates on this will be released closer to the time.

Fundraising events

The London Marathon has been postponed until October 2020 – if you have any questions about this or any other events, please contact sarah.day@pspassociation.org.uk. PSPA will continue to monitor updates and consider how they may affect people living with PSP & CBD and our loyal event participants going forward.

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