We know that there will be a number of concerns from our community related to the coronavirus and how it can affect you following a brain tumour diagnosis. So we wanted to answer a few questions to help you worry a little less.
On this page:
- Where to find official guidance
- What are the latest restrictions?
- What can I do to avoid catching or spreading COVID-19?
- Are people who have been diagnosed with a brain tumour more at risk?
- Changes to shielding advice
- Who is considered "clinically extremely vulnerable"?
- Should I attend my upcoming appointments and continue with my regular medication and treatment?
- Will my upcoming treatment, appointments and scans be affected?
- Will my application to the DVLA be affected by delays caused by COVID-19?
Where to find official guidance
It is expected that the advice will change as the situation develops so it is essential to regularly review the up-to-date information and advice. We recommend that you take a look at:
Depending where you live in the UK, you should follow your Government’s guidelines:
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 email@example.com or starting a live chat. The Support and Information Line is open Monday to Friday, between 9.00am and 5.00pm.
What are the latest measures that I should be following?
(Updated: 29 July 2021)
Many legal restrictions to control COVID-19 have now been lifted across the UK. However, some specific protocols and guidance remain, including targeted asymptomatic testing in high-risk workplaces and border quarantines.
This guidance is different depending on where you live in the UK. We recommended that you make sure you understand the situation in your area by reading the official guidance below:
However, there are four key things you should be doing to prevent the spread of COVID-19, wherever you live in the UK.
All adults in 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.
You should self-isolate immediately and get a PCR test if you 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 you usually have a cough, it may be worse than usual)
- a high temperature - this means you feel hot to touch on your chest or back (you do not need to measure your temperature)
- a loss of, or change in, your normal sense of taste or smell - this means you've noticed you cannot smell or taste anything, or things smell or taste different to normal.
You should self-isolate at home while you book the test and wait for the results.
If you test positive, you must self-isolate for the day your symptoms started (or the day your test was taken if you do not have symptoms) and the next 10 full days.
If you don’t self-isolate after experiencing symptoms of COVID-19, you could be fined.
If somebody in your household develops the symptoms above, everybody in the household should self-isolate as well.
Using an official Test and Trace app helps stop the spread of the virus by informing you 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.
Depending on where you live in the UK, you will need to use a different Test and Trace app:
- if you live in England and Wales, use the NHS COVID-19 app
- if you live in Northern Ireland, use the StopCOVID NI app
- if you live in Scotland, use the Protect Scotland app
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 don’t self-isolate following a notification by an official Test and Trace app, you could be fined.
Currently, the biggest difference in the restrictions across the UK are restrictions around social distancing.
Some areas require mandatory face coverings in public spaces, while others areas don’t require them at all.
Some areas have restrictions on how many people you can meet with at once, while other areas have limits on the number of different households that can meet together and other areas have completely removed restrictions on how many people can meet at once.
We recommended that you make sure you understand the situation in your area by reading the official guidance below:
What can I do to avoid catching or spreading the COVID-19?
(Updated: 29 July 2021)
While many restrictions have now been lifted, the Government has emphasised the need to still follow some guidance to minimise the risk of spreading COVID-19.
Return to work gradually
In some areas of the UK, the Government is no longer instructing people to work from home if they can. However, it’s recommended that businesses empower employees to return to work gradually over the summer.
Wear a face covering
In some areas of the UK, it’s no longer mandatory for people to wear face coverings in public. Even in these areas, it’s still recommended that people wear face coverings in crowded areas such as public transport to help prevent the spread of COVID-19.
Continuing to wear face coverings in public spaces can also help make those who are vulnerable to COVID-19 feel safe about returning to those spaces.
Limit close contact with those outside your household
Although restrictions on the number of people you can meet with are being relaxed across the UK, it’s recommended that you minimise the number, proximity and duration of social contacts.
Where possible, you should meet outdoors and, if you are meeting inside, make sure you let fresh air into homes or other enclosed spaces.
If you work in care, education or other high-risk workplaces, Government is encouraging employers to put testing protocols in place to ensure the risk of spreading COVID-19 is minimised.
You may also want to ensure you test negative for COVID-19 before attending large events where you’re likely to be in close proximity to others outside your household.
If you’re visiting somebody who is classified as “extremely clinically vulnerable” to COVID-19, you may want to make sure you test negative for COVID-19 before meeting them
You can order free COVID-19 rapid lateral flow tests COVID-19 tests online.
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.
Are people who have been diagnosed with a brain tumour more at risk?
(Updated: 29 July 2021)
A brain tumour diagnosis is not thought to put you at greater risk from COVID-19.
However, some cancer patients are classified as “clinically extremely vulnerable” to COVID-19. If you’re in this category, your medical team should have been in touch as you would have been added to the Shielded Patient List.
If you’ve recently been diagnosed with a brain tumour, you may want to ask your healthcare team if they’re adding you to the Shielded Patient List.
Our understanding is that you’ll be added to the Shielded Patient List if you’re currently receiving chemotherapy or immunotherapy, or you’ve received these treatments in the last 6 months.
Changes to shielding advice
(Updated: 29 July 2021)
If you’re considered “clinically extremely vulnerable” and have been added to the Shielded Patient List, you’re now advised to follow the same guidance as everyone else.
However, as someone who is at a higher risk of becoming seriously ill if you were to catch COVID-19, you should think particularly carefully about precautions you can continue to take.
As well as following the guidance outlined above, you may also want to follow the additional guidance on protecting extremely vulnerable people.
Get a vaccine booster shot
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.
Be more careful when meeting others
Although social distancing restrictions are being relaxed across the UK, you want to:
- continue meeting people outside
- make sure inside spaces are well ventilated if you’re meeting inside
- wait until you’re fully vaccinated before meeting others and only meet people who are also fully vaccinated
- continue to wear a face covering when meeting others and asking them to also wear a face covering
- ask people to take a lateral flow test before meeting them
- continue to avoid close contact with people outside your household.
Continue working from home
In some areas of the UK, the Government is no longer recommending that people work from home where possible. However, your employer still has a legal responsibility to protect you from risks to health and safety – including COVID-19.
If your employer expects you to return to work, they should be able to explain the measures they have put in place to protect you from COVID-19. If you’re considered to be “clinically extremely vulnerable” to COVID-19, they may be willing for you to continue working from home.
Which groups of people are considered 'clinically extremely vulnerable'?
(Updated: 29 July 2021)
Although everyone is at risk of becoming seriously ill from coronavirus (COVID-19), there are some people who are at a higher risk than others. These people have been defined as "clinically extremely vulnerable".
If you fall into the category, you should have already been added to the Shielded Patient List.
Below we have outlined the groups of people that fall into these categories.
- Your clinician or GP has added you to the Shielded Patient List because, based on their clinical judgement, they deem you to be at high risk of serious illness if you catch the virus.
- You have been identified through the COVID-19 population risk assessment as potentially being at high risk of serious illness if you catch the virus.
- You have one or more of the conditions listed below (in which case you should have been previously included on the Shielded Patient List):
- solid organ transplant recipients
- people with specific cancers:
- people with cancer who are undergoing active chemotherapy
- people with lung cancer who are undergoing radical radiotherapy
- people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
- people having immunotherapy or other continuing antibody treatments for cancer
- people having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
- people who have had bone marrow or stem cell transplants in the last 6 months or who are still taking immunosuppression drugs
If you think there are good clinical reasons why you should be considered clinically extremely vulnerable, discuss your concerns with your GP or hospital clinician.
Should I attend my upcoming appointments and continue with my regular medication and treatment?
(Updated: 29 July 2021)
You should continue to take all of the medications, which have been prescribed by your healthcare team. This includes steroids (dexamethasone) and anti-epileptic medication.
Your medical team will carefully consider whether it’s safe for you to attend your upcoming appointments and take the right steps to protect you.
So, unless instructed otherwise by your healthcare team, you should continue to attend your upcoming appointments – including appointments for treatments and scans.
The only exception is if you or someone close to you 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.
If you have an upcoming hospital appointment, it can seem a bit scary to attend it, with everything happening at the moment. Measures have been put in place to make sure anyone attending an appointment is being kept safe.
This may include:
- holding appointments in separate areas of the hospital
- restricting the number of people you’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 you when the clinic or scan team are ready to see you, so you can wait safely in your car.
Will my upcoming treatment, appointments and scans be affected?
(Updated: 29 July 2021)
We know our community is thinking about the impact of COVID-19 on their treatment. Unfortunately, people’s appointments and treatments have changed during the pandemic, so we are providing information about what’s happening, the reasons for changes and some advice on how to cope.
The most important thing to remember is that if you should continue to attend hospital appointments unless:
- you develop symptoms of COVID-19
- you test positive for COVID-19
- you’re instructed to self-isolate by the NHS Track and Trace app
- your healthcare team tell you not to attend.
Some changes have been made to NHS hospital services, including:
- you must wear something that covers your nose and mouth when you go to a hospital
- some appointments may be online, by phone or by video call
- you may be asked to come to your appointment alone, if you can
- some appointments may be cancelled or rescheduled – but keep going to any appointments you usually have, unless you're told not to.
If you’re scheduled to have surgery or a procedure, your hospital will contact you with more information about what you need to do beforehand. This may include:
- you, the people you live with and anyone in your childcare or support bubble self-isolating before you go into hospital
- you needing to take a test to check if you have COVID-19 before you go into hospital.
If you need to contact a GP, please don’t go into the surgery in person. Instead, you should either call your GP surgery or contact them via their website.
Your GP surgery will then give you advice about what to do. They may book a phone or video call with a GP, nurse of other healthcare professional and you’ll only be asked to visit the surgery if absolutely necessary.
Be mindful that your GP surgery may be very busy at the moment and you may have to wait longer than usual to speak to someone if it's not urgent.
If you're registered with a GP surgery, you can use online services and apps that may allow you to:
- order repeat prescriptions
- see parts of your health record, including test results
- book, check or cancel appointments.
If you have a repeat prescription that you usually request at your GP surgery or pharmacy, please don’t visit your GP surgery or pharmacy to order them. Instead, you should order repeat prescriptions using:
- online services and apps linked to your GP surgery
- pharmacies that have an online repeat prescription service (you can search for these online).
If you can’t order your prescription online, you should call your GP surgery for assistance.
When you order your prescription, order it at the same time and in the same amount you usually would. There are no shortages of medicines as a result of the COVID-19 pandemic, but ordering more than you need may mean someone else will be unable to get their medicine.
DVLA and coronavirus
(Updated: 29 July 2021)
In response to the COVID-19 pandemic and industrial action, the DVLA is operating at a reduced capacity. This means that there are continuing delays with paper applications and it may be more difficult to reach their contact centre.
However, there are no delays for those applying online.
Currently, paper applications are likely to take 6 to 10 weeks to process, this includes online applications where you’ve sent any further information that’s been required by post.
The DVLA is currently processing all paper applications in the order it’s received them and is regularly updating its website with the date they are currently processing.
If you have a health condition requiring further information from your GP or consultant or you require a physical examination, NHS doctors, consultants and opticians are experiencing delays in providing the information or tests we need to be able to make a licensing decision. This means there may be further delays to these applications, even if they’re submitted online.
All drivers must tell the DVLA if they’re diagnosed with a brain tumour or if the effects of a brain tumour are getting worse. You must also speak to your doctor, who might tell you to surrender your licence.
However, providing you have a current driving licence and have not been told by your doctor or optician that you should not drive, you may be able to drive while DVLA is considering your application and waiting for a response from NHS professionals.