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PSP & CBD and Coronavirus

We are aware that many of you will be concerned about the ongoing Coronavirus crisis 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

Most neurological units are still seeing newly referred patients face to face, if living in tier one or tier two areas. Follow ups continue to be done via phone or video call. Patients are being reviewed by the neurology teams to ensure anyone who needs in clinic assessments are being prioritised but safety of all patients is being put first, which has meant some waiting times have increased.

If attending an appointment in clinic, please wear a face mask if possible, maintain a space of two meters between you and the next patient and make use of handwashing facilities on arrival, 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.

PSPA Helpline

As the three tier rules take affect across England, Scotland, Wales and Northern Ireland, our Helpline Team will be reaching out to people living in areas as they move into tiers two and three, to offer support to those who may need it the most.

Companionship calls with volunteers are also available if you are feeling isolated during this difficult time.

PSPA Support Networks

PSPA Support Network meetings are now taking place via Zoom.

We have meetings for people who have been Newly Diagnosed in the last six months, Local Groups for people living with PSP & CBD as well as their family members and carers, and a Youth Support Group meeting regularly.

For more information, visit our Support Network pages or contact our Helpline on 0300 0110 122 or by emailing helpline@pspassociation.org.uk

Family and Friends Day

The Family and Friends Days planned for 2020 have been postponed. We hope to offer an online alternative during 2021.

Fundraising events

If you have any questions about fundraising events taking place in 2020 and 2021, please contact sarah.day@pspassociation.org.uk.

PSPA will continue to monitor updates and consider how they may affect people living with PSP & CBD.

Join the Fight against PSP & CBD

To aid earlier, accurate diagnosis of PSP & CBD, we’re launching the year-long #JointheFight campaign.

For Carers

You may not think of yourself as a carer as such, but simply as a caring partner, husband, wife, son, daughter or friend.