Understanding coronavirus and Parkinson’s

Although Parkinson’s is different for everyone, current UK government advice for people with Parkinson’s is still to stay at home as much as possible. Check the guidance for your local area as this may be different to the advice in the rest of your country.

This page was originally published on 3 March 2020. It was updated on 14 September 2020 at 12.09pm to reflect the latest guidance. This advice is updated as new information becomes available.

Due to the coronavirus (COVID-19) pandemic, our in-person events and activities were suspended. Some of our in-person events and activities are now restarting. We're phasing a gradual return.

We're here for you

We have a range of information and support to help you during this challenging time. Our friendly, expert helpline advisers are also available to take your call if you have any concerns or questions, or need further advice.

What should I do?

Stay at home as much as possible

Following recent briefings from governments in devolved countries, and from the UK government, guidance for people in England, Wales, Scotland and Northern Ireland is to stay at home as much as possible. The Prime Minister said, “There is one certainty: the fewer social contacts you have, the safer you will be.”

Local lockdowns continue to take place, and new guidelines for the wider population are also coming into place in parts of the UK. 

Nicola Sturgeon, First Minister of Scotland, recently said: “Life – at the moment – shouldn’t feel absolutely normal. I wish it could, but it can’t and it shouldn’t.”

Guidance for people who are clinically vulnerable, including people with Parkinson’s, says that it’s very important to stay at home as much as possible. Follow distancing and hygiene guidelines if you do go out. 

The UK government advises people to think ‘Hands. Face. Space’:

  • You should wash your hands regularly, for at least 20 seconds.
  • You should wear a face covering in enclosed spaces.
  • You should give people outside of your household space of at least 2 metres, or 1 metre where other measures are in place. 

During this pandemic, it's especially important to take extra care of your wellbeing and mental health. We've published an article on how to cope if you're feeling isolated. And the charity, Mind, have put together some helpful guidance on wellbeing and coronavirus.

Reasons to leave home, and distancing

If you leave the house you should try to avoid busy times and spaces. Keep a distance of 2 metres (6 feet) from people you do not live with.

In Northern Ireland, England and Scotland, where it's not possible to maintain a 2m distance, 1m is allowed. This is only where extra precautions are in place and may apply to places like offices, supermarkets, cafes. We recommend that you check what extra precautions are in place before you decide if this is safe for you. Extra precautions include proper ventilation, no face to face contact, face coverings, and plastic screens.

Continue to follow good hygiene practices, including regular hand-washing, not sharing crockery and cutlery, and wiping down surfaces. It's still safest not to go into other people’s homes.

Reasons you may leave your home include:

  • For work, where you cannot work from home.
  • Going to shops and other places that are permitted to be open, staying 2m apart.
  • To exercise or spend time outdoors, staying 2m apart.
  • To socialise outdoors, staying 2m apart (in groups of no more than 6 people in England, 30 people in Wales, 15 people in Northern Ireland, and 6 people in Scotland – from no more than 2 households).
  • To attend church services or places of worship.
  • Any medical need, including to donate blood, avoid injury or illness, escape risk of harm, or provide care or help to a vulnerable person.

How many people can I see at once?

It is best to stay at home as much as possible and avoid as much social contact as you can. If you leave your house you should try to avoid busy times and spaces, and keep a distance of 2 metres (6 feet) from people you do not live with.  

The 4 nations have different guidelines and laws. Your personal situation and circumstances may lead to exceptions, or extra precautions. As a guide, at the time of writing the social gathering rules for the general population are as follows:

 

England

Northern Ireland

Scotland*

Wales**

Indoors (meeting friends and family, including overnight stays)

Up to 6 people from different households

Up to 6 people from no more than 2 households

Up to 6 people from no more than 2 households

Up to 6 people from your extended household at one time

Outdoors (meeting friends and family)

Up to 6 people from different households

Up to 15 people from different households

Up to 6 people from no more than 2 households

Up to 30 people from different households 

 

*In Scotland, children under the age of 12 do not count towards the 6 people.
**In Wales, children under the age of 11 do not count towards the 6 people.

Wear a face covering

If you have to be in an indoor space, it’s best to wear a face covering. You may be asked to wear one in certain situations. You should be informed of this before you go. Face coverings on public transport, shops and other indoor places are compulsory in England, Scotland, and Northern Ireland. In Wales, face coverings are compulsory on public transport and are compulsory in shops and indoor public spaces.

You can see how to make and wear a face covering here. We also sell face coverings and filters in our shop here.

You do not need to wear a face covering if you have a good reason not to. If you have a physical or mental illness, or a disability that means you cannot put on, wear or remove a face covering, you do not have to wear one. You do not have to provide medical evidence of your reason for not wearing a face covering.

For exemptions and guidance in different parts of the UK you can refer to the specific guidance for the country you’re in.

If you feel more comfortable, you can carry a face covering exempt card. You can download and print one free of charge here. The second and third cards under the heading, 'Learning disability cards' are suitable for anyone with Parkinson's who cannot wear a face covering.

Can I form a support bubble, or extended household?

Support bubbles and extended households are intended to help you if you’re lonely and feeling isolated, or if you need to care for or support someone else. You should take particular care when deciding whether to form a support bubble, or extending your household, and any implications this may have on your health. 

Support bubbles or extended households must be exclusive. If you decide to form a bubble or extended household, you can only join one household. You and that household must not extend with anyone else. You must not change this arrangement. 

In England and Northern Ireland, if you live by yourself or are a single parent with dependent children, you can form a support bubble with one other household of any size. In England, if your support bubble takes you over 6 people, this is allowed.

In Scotland, if you live by yourself or are a single parent with dependent children, you can extend your household with one other person or single person with dependent children. If you have a partner who does not live with you, you can also form an extended household with them, even if neither of you lives alone or only with children under 18.

In Wales, any 4 households can join together to form a single extended household. But, only 6 people from the single extended household can meet indoors at one time. Children under the age of 11 do not count towards the 6 people.

If you meet the criteria and have Parkinson's, you can form a support bubble or extend your household.

Forming a support bubble, or extending with another household or households, means you can meet – indoors or out – and be closer than 2 metres apart. You can also stay overnight as if you lived with that household. 

    I live with, or care for someone with Parkinson’s - what should I do?

    If you’re caring for someone with Parkinson’s, there are some simple steps that you can take to protect them and reduce their risk. Ensure you follow advice including the following:

    Arrange a test, and self-isolate if you, or anyone in your household, has symptoms. This should be for a period of 10 days.

    The person you live with, or care for, might like a booklet with information and support about Parkinson's and coronavirus. You can order a copy of this booklet, free of charge, here.

    I volunteer with people with Parkinson’s - what should I do?

    We know that meeting others living with Parkinson's is important, and many people are telling us they’re ready to consider getting out in person again. Others have shared that staying connected through activities online or by phone is enough for now.

    Your health and wellbeing, and your support, is important. So, our priority at this stage is supporting you to restart only what is necessary and safe. While coronavirus remains a risk, we’re taking a phased approach to volunteering in person, and delivering in person activities.

    If you’re thinking about getting started, you’ll find all the information you need on our volunteer portal, Assemble. You can also get in touch with your staff contact. They’ll be able to guide you through resources co-designed by volunteers and staff, and start what is safe to do so.

    Want to keep things virtual? If you already know that you do not want to, or cannot yet, return to in person activities, we're committed to supporting you to explore new ways to bring people together and collaborate virtually.

    Find out more in the latest update on our approach to in person activities.

    Shielding measures for people who are extremely vulnerable

    Strict shielding measures for people in the UK classed as extremely vulnerable were introduced in March. Shielding is for people at very high risk of severe illness and hospital admission from coronavirus (COVID-19) because of an underlying health condition. Only people who were advised by the NHS had to take this precaution.

    Because disease levels are lower now than when shielding was first introduced, shielding advice is officially paused across the UK. You should have received a letter updating you on what this means for you. 

    You may choose to remain at home if you do not feel comfortable with contact with others. Though time outside in the fresh air, when it's very quiet, is likely to make you feel better in yourself. Parkinson’s is different for everyone and we know that it’s a challenge to balance your mental health, physical health and social wellbeing. If you’re unsure or need to talk to someone, we’re here. Call our advisers on 0808 800 0303. 

    Parkinson's and coronavirus (COVID-19)

    I have Parkinson’s - am I more at risk of coronavirus and what precautions should I take?

    If you have Parkinson's, you have no increased risk of getting coronavirus.

    While the government has said people with Parkinson’s are more at risk of complications if they get coronavirus, the advice for people with Parkinson’s is the same as for anyone who is not advised to shield.

    Why do people with Parkinson's have an increased risk of severe illness from coronavirus?

    Parkinson’s can cause respiratory issues for some people. If you have advanced Parkinson’s or have lived with the condition for a long time, you’re more likely to have breathing and respiratory difficulties. Coronavirus affects your lungs and airways. This is why people with Parkinson's are described as being at greater risk of severe illness if they get coronavirus.

    What are the symptoms?

    Coronavirus (COVID-19) affects your lungs and airways. Normally, it starts with a fever and dry cough which can lead to a shortness of breath.

    Be alert for the following symptoms

    • A high temperature – over 37.8 degrees. If you don’t have a thermometer, check if you feel hot to touch on your chest or back.
    • A new, continuous cough – this means coughing repeatedly for a long period.
    • Sudden loss of smell or taste – while loss of smell can be an early symptom of Parkinson’s, it’s important to rule out coronavirus (COVID-19) before exploring other diagnoses.

    If you, or someone you live with, experiences these symptoms, follow NHS guidance on how long you should stay at home and self-isolate for at least 10 days.

    How might coronavirus affect Parkinson’s medication?

    If you do become unwell with a virus of any kind, it’s important to keep taking the medication prescribed to you for Parkinson’s.

    Our Clinical Director, Dr Donald Grosset, advises: “You should not suddenly stop taking your prescribed medication for Parkinson’s, as that can cause additional problems. However, missing a small number of doses – because of vomiting, for example – will not cause you harm.

    “Follow the advice given to you by your health professional who might adjust your tablets or dose, depending on your condition.”

    Support and self-isolation

    I'm staying at home or isolating and I need practical help – what are you doing to support me?

    We can support you to find practical help - locally. Please call our helpline

    You can also read about how we’re fighting for you in this crisis, all over the UK.

      Staying up to date on coronavirus around the UK

      Coronavirus testing and contact tracing - what do I do?

      If you, or anyone in your household, has symptoms, you should isolate for at least 10 days.

      Each country in the UK has announced systems for coronavirus testing and contact tracing to control the spread of the virus.

      Testing and tracing means that, if you have symptoms, you can arrange a test. If your test comes back positive, you will be asked about who you’ve been in close contact with in the 2 days before, and 10 days after, developing symptoms. Close contact means: 

      • People you’ve spent 15 minutes or more with at a distance of less than 2 metres.
      • People you've had direct contact with - such as sexual partners, household members or people with whom you’ve had face-to-face conversations at a distance of less than 1 metre.

      Those people will be notified by phone, email, or text that they should isolate for 14 days. They won’t be told who they were in contact with who had the virus. 

      If you are notified that you may have been in contact with the virus, you must self-isolate for 14 days even if you do not have symptoms.

      How will I know if a notification is genuine?

      If you've been advised by one of the country testing and tracing services to isolate, please do so. Trace callers will never ask you for details that could put your privacy or finances at risk.

      The BBC has shared advice on how to avoid scams.

      Mobile phone tracing apps

      If you live in Northern Ireland or Scotland, you can download a free mobile phone app that will tell you if you have been in contact with someone who has coronavirus.

      Download the app for Northern Ireland

      Download the app for Scotland

      Apps for people living in England and Wales are due to be released on 24 September.

      Where can I find up to date information and guidance?

      These sources reflect the most up-to-date information and will be updated as the situation progresses.

      Join our Facebook group

      Many people are feeling concerned or more anxious because of coronavirus. We know that some of the government advice means a lifestyle change. This group is a place to connect while you're spending less time with others. You don't have to have Parkinson’s to be part of this community. It’s for friends and family too.

      We're here for you

      We’re here for you throughout the coronavirus (COVID-19) crisis. Using our support tool, choose the topics that are important to you. We’ll show you the information that matters to you.

      What we’re speaking out on during the coronavirus crisis

      We’re supporting and sticking up for people with Parkinson’s. Here are some of the things we’re fighting for right now.