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Caring for someone with a brain tumour during the coronavirus pandemic

If you look after someone with a brain tumour then you may have concerns about how to protect them, and what to do if you become unwell or unable to look after them during Coronavirus. UPDATED - 29 July 2021

Where to find official guidance

Guidance for those who provide unpaid care to friends or family 

Guidance on protecting people who are clinically extremely vulnerable from COVID-19 

International resources 

If you live outside the UK, we recommend you look at the list of international resources put together by the International Brain Tumour Alliance (IBTA). 


If you would like to talk through or clarify any of the information on this page, please contact our Support and Information Line by ringing 0808 800 0004, emailing us at support@thebraintumourcharity.org or starting a live chat. The Support and Information Line is open Monday to Friday, between 9.00am and 5.00pm.

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Is the person I care for at greater risk from COVID-19?

(Updated: 29 July 2021)

For most people who’ve been diagnosed with a brain tumour, there is no increased risk from COVID-19.

However, some cancer patients are classified as “clinically extremely vulnerable” to COVID-19. If the person you care for is in this category, your medical team should have already been in touch as they will have been added to the Shielded Patient List.

Our understanding is that somebody will only be added to the Shielded Patient List if they’re currently receiving chemotherapy or immunotherapy, or they’ve received these treatments in the last 6 months.

Find out more

If a loved one has recently been diagnosed with a brain tumour, you may want to ask your healthcare team if they’re going to be added to the Shielded Patient List.

Currently, people who are classified as “clinically extremely vulnerable” are instructed to follow the same guidance as everybody else. Although you may want to take extra precautions to protect them from the spread of COVID-19.

Learn more

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What should I do if I, or the person I care for, needs to self-isolate?

(Updated: 29 July 2021)

When should somebody self-isolate?

People should self-isolate immediately and get a PCR test if they’re told they need to self-isolate by an official Test and Trace programme or if they develop any of the following symptoms:

  • a new continuous cough - this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if they usually have a cough, it may be worse than usual)
  • a high temperature - this means they feel hot to touch on their chest or back (they do not need to measure their temperature)
  • a loss of, or change in, their normal sense of taste or smell - this means they've noticed they cannot smell or taste anything, or things smell or taste different to normal.

People should also self-isolate if somebody in their household develops the symptoms above.

People should self-isolate at home while they book the test and wait for the results. If they test positive, they must self-isolate for the day their symptoms started (or the day their test was taken if they do not have symptoms) and the next 10 full days.

Stay at home guidance

If you live with the person you care for and they aren’t considered “clinically extremely vulnerable”

If you develop symptoms or test positive for COVID-19, you should first see if somebody in your household who hasn’t developed symptoms or tested positive for COVID-19 can take over your caring responsibilities.

You should then follow the stay-at-home guidance and distance yourself from the other people in your household wherever possible.

If it’s the person who you care for that has developed symptoms or tested positive for COVID-19, you should distance yourself unless you are providing essential care. You may also want to wear additional PPE when providing care.

Stay at home guidance

If you live with the person you care for and they are considered “clinically extremely vulnerable”

If the person you care for is considered “clinically extremely vulnerable” to COVID-19 and you develop COVID-19 symptoms or test positive for COVID-19, you should make alternative arrangements for care.

Find out more

If you’re unable to arrange alternative care provisions, you should make sure you wear additional PPE when providing care and, wherever possible, distance yourself unless you are providing essential care.

Stay at home guidance

What to do if you don’t live with the person you care for

You should try to arrange for somebody else to perform your caring responsibilities if:

• you and the person you care for do not live together and either of you get symptoms or a notification of a positive test

• you and the person you care for do not live together and either of you are notified that you are a close contact of someone else with a positive test

• you and the person you care for do not live together and someone in either your household or their household gets symptoms or a positive test.

Find out more

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How can I protect the person I care for?

(Updated: 29 July 2021)

Despite many legal restrictions being lifted across the UK, there’s still a lot you can do to protect your loved one, including:

Making sure you’re both vaccinated

All adults in across the UK have now been offered at least one dose of a COVID-19 vaccine. The vaccines are safe and effective. They give you the best protection against COVID-19 and you need two doses of vaccine for maximum protection.

It’s likely that COVID-19 booster vaccines will be offered to the most vulnerable people to protect them over the winter months. This will most likely follow the same prioritisation as the initial vaccine rollout and it’s likely carers will also be able to get a COVID-19 booster vaccine.

Read more about the vaccines

Creating an Emergency Care Plan

An Emergency Care Plan is essentially a record of everything somebody would need know if they took over your caring responsibilities. It should include:

  • the name and address and any other contact details of the person you look after
  • who you and the person you look after would like to be contacted in an emergency
  • details of any medication the person you look after is taking
  • details of any ongoing treatment they need
  • details of any medical appointments they need to keep.

You may need to self-isolate suddenly, so you should make sure your Emergency Care Plan is in an easily shareable format.

Learn more about Emergency Care Plans

Use an official Test and Trace app

Using an official Test and Trace app helps stop the spread of the virus by informing you and the person you care for that you have been in close contact with someone who has since tested positive for COVID-19, even if you don’t know each other.

You must self-isolate if you are told to do so by an official Test and Trace app, for example if you have come into contact with someone who has tested positive.

If you or the person you care for are meeting people outside of your households, you may want to make sure the people you are meeting are also using an official Test and Trace app.

Depending on where you live in the UK, you will need to use a different Test and Trace app:

Continuing to wear a face covering in public spaces

Although face coverings are no longer mandatory in public spaces, you and the person you care for may want to continue wearing them.

You may also want to make sure anybody who visits the person you care for wears a face covering when they meet.

Asymptomatic testing

If you don’t live with the person who you provide care for, you may want to take a COVID-19 rapid lateral flow test before you visit them.

You may also want to ensure anybody else who visits the person you care for tests negative for COVID-19 before visiting them.

You can order free COVID-19 rapid lateral flow tests online.

Order free tests

Wear PPE when providing care

If you do not live with the person or people you care for, it is recommended that you wear PPE when delivering care.

The type of PPE you should wear will depend on the type of care you provide and you can find out more in the Government’s guidance for those providing unpaid care.

PPE must be worn correctly in order to reduce the risk of transmission. PPE should be put on and removed at least 2 metres away from the person you are caring for.

The Government are currently offering free PPE for COVID-19 needs to unpaid carers who do not live with the person or people they care for. This will be available until the end of March 2022 and can be accessed through local authorities (LAs) and local resilience forums (LRFs).

Get free PPE

Reducing social contact

Although there are no longer restrictions on the number of people you can meet with, it’s recommended that you minimise the number, proximity and duration of social contacts.

You should meet outdoors where possible and let fresh air into homes or other enclosed spaces.

You may want to take some of the additional precautions explained here when you or the person you care for meet people from outside your households.

Continue working from home

In some areas of the UK, the Government is no longer recommending that people work from home where possible. Even so, employers still have a legal responsibility to protect employees from the spread of COVID-19.

Your employer or the employer of the person you care for should be able to explain the measures they have in place to protect you from COVID-19. Employers may also be willing for employees to continue working from home if they have caring responsibilities or are more vulnerable to COVID-19.

The Health and Safety Executive (HSE) has published guidance on protecting vulnerable workers, including advice for employers and employees on how to talk about reducing risks in the workplace

Personal hygiene

Wash your hands with soap and water or use hand sanitiser regularly throughout the day. Regular hand washing is an effective way to reduce your risk of catching illnesses, including COVID-19.

It is particularly important to wash your hands:

  • after coughing, sneezing and blowing your nose
  • before you eat or handle food
  • after coming into contact with surfaces touched by many others, such as handles, handrails and light switches
  • after coming into contact with shared areas such as kitchens and bathrooms
  • when you return home

Where possible, avoid touching your eyes, nose and mouth. If you do need to touch your face (for example to put on or take off your face covering), wash or sanitise your hands before and after.

Hands touch many surfaces and can become contaminated with viruses, including COVID-19. You can transfer viruses to your eyes, nose or mouth from your hands if they are contaminated. Then viruses can enter your body and infect you. Washing or sanitising your hands removes viruses and other germs, so you’re less likely to become infected if you touch your face. Using soap and water is the most effective way to clean your hands, especially if they are visibly dirty. Use hand sanitiser if there isn’t soap and water available.

Coughing and sneezing increases the number of droplets and aerosols released by a person, the distance they travel and the time they stay in the air. A cough or sneeze of an infected person which is not covered will significantly increase the risk of infecting others around them.

These actions will reduce the spread of droplets and aerosols carrying COVID-19 and other viruses, including those that cause coughs and colds:

  • Cover your mouth and nose with disposable tissues when you cough or sneeze.
  • If you do not have a tissue, cough or sneeze into the crook of your elbow, not into your hand.
  • Dispose of tissues into a rubbish bag and immediately wash your hands.

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Who will look after the person I care for if I am unable to due to having to self-isolate or becoming seriously ill?

(Updated: 29 July 2021)

If you’re unable to provide care because either you’re having to self-isolate or are seriously unwell yourself, you should try to arrange alternative care.

You may be able to call on trusted neighbours, friends or family members to temporarily take over your caring responsibilities.

You could also contact your local authority or healthcare provider, as they may be able to help provide care temporarily.

Carers Trust is an organisation that may also be able to help you find support local to you.

Find local support

It is a great idea to develop an Emergency Care Plan so that anybody supporting you in providing care understands the care that is required.

Learn more about Emergency Care Plans

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Is it safe for a care workers to come into our home?

(Updated: 29 July 2021)

The government has issued guidance to home care providers to help ensure that the correct measures are put in place to prevent the spread of COVID-19, including:

  • making sure all front-line care workers are vaccinated
  • providing free PPE to health and social workers
  • reducing contact between care staff
  • regular testing of all front-line workers even if they haven’t developed COVID-19 symptoms
  • ensuring front-line care workers are able to self-isolate when necessary.

You can speak with your care provider about what protective measures they are taking and how they plan to respond if any of their staff are affected.

Find out more

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Should my loved one still attend medical appointments?

(Updated: 29 July 2021)

Your medical team will carefully consider whether it’s safe for the person you are caring for to attend their upcoming appointments and take the right steps to protect them.

So, unless instructed otherwise by their healthcare team, they should continue to attend their upcoming appointments – including appointments for treatments and scans.

The only exception is if they or someone close to them has any COVID-19 symptoms, have received a positive COVID-19 test or have been told to self-isolate by the NHS Track-and-Trace app.

Restrictions may mean that if the person you care for is able to attend appointments on their own, you may currently not be able to go with them.

It’s absolutely natural to be feeling a bit nervous about your loved one attending their appointment on their own, but the best thing you can do is contact their medical team, key worker or clinical nurse specialist. They can help to reassure you and talk you through the measures they’re taking to keep people safe, which may include:

  • holding appointments in separate areas of the hospital
  • restricting the number of people they’ll have contact with
  • disinfecting all medical equipment such as MRI scanners, waiting rooms and consultation rooms
  • asking people not to turn up early to appointments, to limit the amount of time spent at the hospital
  • texting them when the clinic or scan team are ready to see them, so they can wait safely in your car.

You can also ask whether there are other options for appointments, for example holding it over the phone or virtually.

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Making an Emergency Plan

(Updated: 29 July 2021)

An emergency plan makes provisions for occasions when you are unable to fulfil your caring role. Knowing that you have made an Emergency Care Plan can give you, and the person you care for, peace of mind that appropriate care will be in place for them.

Regardless of the current circumstances it is always a good idea if you are a carer to have an Emergency Care Plan. However, now more than ever, it is recommended that all carers create an Emergency Care Plan with the person that they care for. If you become unable to care for your loved one this plan will help you arrange help from other people to deliver the care that’s needed. This could be help from family or friends, or a care provider.

The government advice is that your Emergency Care Plan should include:

  • the name and address and any other contact details of the person you look after
  • who you and the person you look after would like to be contacted in an emergency
  • details of any medication the person you look after is taking
  • details of any ongoing treatment they need
  • details of any medical appointments they need to keep

You could also include the following information about the person you care for:

  • where any current medication is stored
  • details of any known allergies
  • details of their GP and pharmacy
  • any care and support services they receive
  • any continence products needed and who supplies them
  • any mobility challenges and mobility aids such as a wheelchair or hoist
  • anything behavioural that others need to be aware of.

An Emergency Care Plan should be in a format that can readily be shared with other people who will need to discuss the plan with the person you care for.

You may be able to arrange help and support from family and friends, but it can be reassuring to have the involvement of your local authority or healthcare provider in case informal arrangements fall through. It may also be helpful to contact your local carers support organisation who can help with contingency planning.

Carers UK have some information about setting up a contingency plan for care needs.

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Looking after yourself

(Updated: 29 July 2021)

Caring for someone with a brain tumour can be both physically and emotionally demanding at any time. However, there are additional pressures at the current time and the potential for reduced access to support such as respite care. It can be easy to put your own needs last; but you need to look after your own health and wellbeing.

You may find it helpful to stay in touch with friends and families, by phone, online or by post. Let people know how you would like to stay in touch and build that into your routine.

Physical activity is important for health and wellbeing, including managing stress, and encouraging positive feelings and sleep. If you are able to, and following government guidance, go for a walk once a day or find an activity that you can do in the home.

Learn more about support for carers

Useful contacts

It may also be helpful to contact your local carers support organisation who can help with contingency planning and support that may be available in your area. You can find out about local carer organisations at Carers UK.

A helpline has been set up for those who are struggling to get the supplies and support they need – call 0800 028 8327.

A number of local voluntary groups that may be able to help in practical ways, for example with home deliveries.

Taking time off work

Trying to juggle looking after your loved one and working can be really difficult and you might have to look at your working hours to find a different way to manage it all. But we also know that understanding your rights can be confusing, so we’ve put together some information to help you do what you need to.

As an employee, you have a statutory right to take a ‘reasonable’ amount of time off from work:

  • To see to an emergency or unforeseen matter involving your partner, child, parent, grandchild, or someone who relies on you for care.
  • There is no fixed amount of time you can take off.
  • The time off is unpaid unless your employer is willing to give paid time off as a contractual right.
  • If you aren’t given time off for dependants, your employer may allow you ‘compassionate leave’ - this can be paid or unpaid leave for emergency situations. Check your employment contract, company handbook or intranet for details about compassionate leave.

ACAS has more useful information about taking time about taking time off to look after someone that you care for, so do take a look.

Furlough leave

The Coronavirus Job Retention Scheme (also known as the Furlough Scheme) has been extended until 30 September 2021.

You can be on any type of employment contract, including full-time, part-time, agency, flexible or zero-hour contracts to be furloughed. Although you can’t claim through this scheme if you’re self-employed or get any income from self-employment.

If you want to be place on furlough so you’re able to dedicate more time to your caring responsibilities, you should speak to your employer. We know that this conversation isn’t always an easy one. Therefore you might want to have a look at information from Carers UK to prepare for this conversation.

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What is the latest update for schools?

(Updated: 29 July 2021)

Schools have reopened to all age groups in England, Scotland, Wales and Northern Ireland.

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About the author

I’m a member of the Children and Families Team at The Brain Tumour Charity and previously practised as a Speech and Language Therapist, working with children of all ages. I’m dedicated to supporting children, young people and families affected by a brain tumour by being there every step of the way to provide help, understanding and support, when it’s needed most.

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