Coronavirus and cancer – guidance for young people aged 19+
Getting your head around cancer is difficult. Add to that the challenges of coronavirus and suddenly you’ve got a whole lot more guidance to get to grips with. We’ve reviewed the Government advice to help you understand what it means for young adults with cancer.
Update: 5 January 2021 (update coloured in red).
In addition to all of the guidance below, please note that from 5 January 2021 we have entered a second National Lockdown. This means that everyone except for key workers (like people working in the food supply industry, doctors and nurses) should stay at home. If you are a key worker and are also clinically extremely vulnerable you should also stay at home. If you are not a key worker you can only go out for exercise and for essential activities like buying food, getting medicines and accessing healthcare. People who are clinically extremely vulnerable, should only go outdoors for medical appointments, exercise and if essential (such as reaching safety from domestic abuse). Anyone who has to go out should stay local and not travel to other areas of the country.
This guidance is for young people aged 19 and over. If you’re under 19, have a read of our guidance for younger people. If there’s anything you’re not sure about, speak to your clinical team so they can advise you.
Most young people who catch coronavirus are not getting severe forms of the illness, but a few young adults with certain cancers are more at risk of getting a more severe illness if they catch it. This is also the case if you’re having, or have had, certain cancer treatments. The government calls this being clinically extremely vulnerable. This applies to you if you’ve:
- Had a solid organ transplant – such as kidney, liver, pancreas, heart or lung
- People with some types of cancer who:
- Are on active chemotherapy
- Are on radical radiotherapy for lung cancer
- Are at any stage of treatment for a blood or bone marrow cancer such as leukaemia, lymphoma or myeloma
- Are on immunotherapy or other continuing antibody treatments for cancer
- Are having other targeted cancer treatments which can affect the immune system such as protein kinase inhibitors or PARP inhibitors
- Have had a bone marrow or stem cell transplant in the last six months
- Are on medication that ‘significantly’ compromises your immune system – most cancer treatment causes some level of lowered immune function so your local cancer team will help you understand if your treatment is at this level of significance, and clarify if you are in the clinically extremely vulnerable group.
- Have severe long-term lung disease, for example cystic fibrosis or severe asthma
- Have a rare disease that increases your chance of infection
- Have problems with your spleen or have had your spleen removed
- Are an adult with Down’s Syndrome
- Are an adult with chronic kidney disease or having dialysis
- Are pregnant and have significant heart disease.
In addition, the Government adds that if a clinician or GP deems you to be in the highest risk group because in their clinical judgement and knowing your personal circumstances they feel you are at higher risk, they can add you to the clinically extremely vulnerable list, even if none of the above criteria apply. For example, some people are just unfortunate and have a pattern of reacting more severely to things, or always get more side effects than others in similar circumstances.
Your local cancer team is responsible for letting you know how at risk you are of becoming seriously ill if you get COVID-19. They should tell you if your risk level changes. Get in touch with them if you’re not sure.
Towards the end of last year, scientists discovered a new strain of coronavirus that seemed to spread more quickly. At the present time there is no evidence that it causes more severe disease. The Government needed to re-introduce some of the restrictions on people because of the faster spread and increase in numbers of COVID-19 cases. This means that children, young people and adults who are in the clinically extremely vulnerable were advised to begin ‘shielding’ again if they live in a Tier 4 (Stay at Home) area from 20 December 2020, and including the second temporary national lockdown period from 5 January 2021.
In England the Government has produced some easy guide posters on the Tier System here.
From 5 January 2021 we entered a second National Lockdown. This means that everyone except for key workers (like people working in the food supply industry, doctors and nurses) should stay at home. If you are a key worker and are also extremely clinically vulnerable you should also stay at home. If you are not a key worker you can only go out for exercise and for essential activities like buying food, getting medicines and accessing healthcare. People who are extremely clinically vulnerable, should only go outdoors for medical appointments, exercise and if essential (such as reaching safety from domestic abuse). Anyone who has to go out should stay local and not travel to other areas of the country.
Tier 1 = Medium Alert
Tier 2 = High Alert
Tier 3 = Very High Alert
Tier 4 = Stay at home
Tier 5 = National Lockdown
For more details visit the Government websites
In Scotland the levels are called ‘protection levels’ rather than Tiers, and there are five levels 0-4. Clinically extremely vulnerable people living in Scotland in a level 4 protection area should also follow their clinician’s advice to shield if told to. This came into force on 2 November 2020.
From Tuesday 5 January 2021 all of Mainland Scotland and the Isle of Skye are moving into Protection Level 4 (Stay at Home) and additionally supporting the UK National lockdown, which includes the closure of schools, universities and all non-essential business.
This page contains a section on the current Scotland shielding advice. People shielding in Scotland are advised not to use public transport.
The remaining Scottish Islands will be at Protection Level 3, but noting that if you have to travel to mainland Scotland for your cancer treatment, the Level 4 / and temporary lockdown rules will apply. You should still travel to access medical treatment if you need to.
For more details visit the Government websites
In Wales, the levels are referred to as ‘Alert Levels’. Clinically extremely vulnerable people living in Wales are also advised to shield from 22 December 2020.
All of Wales is under their Alert Level 4 restrictions and this is anticipated to continue at least until the end of January 2021. For Wales this was already a stay at home message with later staggered re-opening of schools and universities, however, the Welsh Government are also supporting the UK national lockdown and will maintain online learning.
The Guidance for Wales can be found here.
For more details visit the Government websites
In Northern Ireland the guidance was updated on 26 December 2020, and increased restrictions again to a national lockdown level, for six weeks with review after four weeks. However, a few of these restrictions were lifted again on 2 January, such as removing curfews on some shops.
- Essential retail and hospitality services can now trade beyond the previous curfew hours of 8pm
- Delivery takeaway services are allowed until 11pm
- Hospitality venues such as cafes, restaurants, pubs, bars and social clubs must remain closed, with the exception of providing food and drink for takeaway, drive-through or delivery
- Close contact services such as hairdressers and beauty salons must close
- Gyms must close, with personal exercise only permitted outside
- Churches can resume services, with weddings and funerals have a cap of 25 people
- Households are not allowed to mix indoors or outside, except for certain exceptions, including support bubbles, childcare, maintenance work
- Indoor sports are banned except for professional athletes
- Leisure and entertainment venues such as theatres, concert halls, cinemas, amusement arcades, bingo halls, bowling alleys and skating rinks must close
- Overnight stays are banned unless it is with a member of your bubble
- Higher education institutions, such as universities must deliver distanced learning (Schools has been planned to re-open during January but this is now under review in line with the UK national lockdown)
- People should work from home unless unable to do so
For more details visit the Government websites
The advice about shielding has been updated since the first lockdown in early 2020. It now aims to strike a better balance between keeping you safe from the virus, and also reducing some of the potential harms on mental and social wellbeing linked to the previous stricter shielding approach. Shielding only applies in Tier 4 Alert Levels or Level 4 protection levels to the clinically extremely vulnerable, and during temporary periods of national lockdown.
- If you travel for work or school, follow the guidance for whichever the highest Tier Level is (if it is different from your home level). Do not attend work, school or university during national lockdown periods or if you are in a Tier 4 area
- Maintain strict social distancing, wash your hands regularly and avoid touching your face
- Keep the number of people you have social interaction with as low as possible
- Avoid gatherings with large numbers of people, especially indoors
- If the Tier you live in allows meeting with others outside your household, your risk is lower if you meet them outdoors. If you meet indoors keep rooms well ventilated, and stay two meters apart from visitors
- Tier 1, you must limit the number of people you socialise with indoors to 6 if they do not live with you normally (including children in the numbers). You can socialise indoors with more than 6 people if they are from your own household or your support bubble. There is separate guidance for meeting larger numbers at work or in education settings, and some other specific exceptions, for example; funerals, palliative care, weddings, house moves, elite athletes
- Tier 2, you must not meet with anyone indoors unless they are from your own household or support bubble. You can meet people outside your household outdoors in groups of less than six, and ideally as low a number as possible
- Tier 3, you must not meet anyone indoors who you do not live with or have a support bubble with. You can still exercise outdoors (following hands, face space rules) but you should not meet socially outdoors (this includes private gardens). You can shop for essential supplies and medicines; follow hands, face, and space rules
- Tier 4 and periods of national lockdown, maintain modified shielding but you can go outdoors to exercise, to meet with one other person from another household following the two metre rule, stay home as much as possible, meet with people in your support bubble or those you live with indoors. Keep to the two metre rule indoors especially if anyone in your household or support bubble has coronavirus symptoms.
- Work from home or access your studies from home wherever possible. If you need support to work or study at home ‘Access to Work’ can provide support with the disability-related extra costs. Remember you have disability rights from day one of a cancer diagnosis
- Tier 4 and national lockdown periods only – if you cannot work from home, do not go to work, school or university
- Tiers 1-3 if you cannot work from home your employer must make reasonable adjustments to ensure you can attend work safely. Your employer still has a legal duty to protect you at work so you’re not disadvantaged because you have cancer
- Consider how you travel, wear a mask and consider travelling outside of peak times. If you can, walk or cycle
- Avoid sharing a car with people outside your own household or support bubble
- You can get advice about your employment rights from ACAS or by calling their helpline on 0300 123 1100 or ask your CLIC Sargent Social Worker to support you to contact them
- If you cannot find suitable arrangements your employer may be able to furlough you under the Coronavirus Job Retention Scheme which has been extended to April 2021
- Tier 4 (clinically extremely vulerable), as you are being told not to work if you can’t work from home, you may be eligible for Statutory Sick Pay (SSP) or Employment Support Allowance (ESA).
- Students and pupils should continue to attend education settings in Tiers 1-3 unless advised by their clinician not to attend
- Schools and Universities should have measures in place to limit cross infection (hands, face, space)
- Clinically extremely vulnerable people in Tier 4 should not attend education settings, but parents, other household members and siblings of the vulnerable person may still attend
- During national lockdown periods schools and universities will revert to online learning again (with some exceptions for practical university courses that cannot be done online). Schools will remain open for children of key workers.
- Go to shops or pharmacies at quieter times of the day. Wear a face covering and remember hands, face, space
- Home deliveries or using the NHS Volunteer Responders programme can help with collecting and delivering shopping, medicines and other essential supplies. Call 0808 196 3646 between 8am and 8pm to self-refer or speak to your CLIC Sargent Social Worker who can make a referral
- If you are clinically extremely vulnerable and in Tier 4, and during national lockdown periods, you should not go to shops or pharmacies
- Clinically extremely vulnerable people can use the Government’s National Shielding Service to register themselves, or on behalf of someone else, to:
- Request priority access to supermarket delivery slots (if you already have access to supermarket deliveries, that will continue – you don’t need to do anything further)
- Tell your council if you need support in order to follow this guidance that cannot be provided by friends, family or other support networks
- Update your details- for example your address.
You’ll be asked for your NHS number. You can find it on any letter the NHS has sent you, or on a prescription. It is helpful if you register even if you do not have any support needs at this time. If you have already used the service to register support needs but your circumstances or needs have changed, you can submit a new registration or set up an NHS log in account and change your details using the same link. If you need to register your needs by phone, or have an urgent need, you should contact your local council directly.
- You should still attend medical and social care appointments and seek help if you are unwell. Follow your usual systems for accessing support if you are experiencing symptoms of side effects of your cancer treatment, and do not delay getting emergency care if you need it. You may have a local cancer helpline for treatment/cancer related issues, or call NHS 111, or 999 for a medical emergency
- Many Health and social care providers have systems that also help you to access support from home
- Health and social care staff visiting your home are required to follow government guidance on wearing Personal Protective Equipment.
Taking care of your mental health has always been important during cancer diagnosis and treatment and afterwards. The extra pressures from coronavirus make this even more important.
Staying at home and not being able to spend much time with friends or family may feel daunting and frustrating. Doing what you can to stay mentally and physically active at this time is important. Simple things you can do to include:
- Exercising at home and outdoors – you’ll find links to some great workouts in our boredom busters article
- Doing things you enjoy – box sets, gaming, baking and other indoor hobbies
- Leading a healthy lifestyle – you’ll find lots of articles about this on our Health and wellbeing pages
- Opening your widows or sitting in the garden – fresh air and natural sunlight are a big boost
- Exercise Outdoors keeping at least 2 meters apart from others. How about joining the Walk 1000 Miles Challenge (over 1 year, that’s 2.74 miles a day). It may sound daunting if you are unwell at the moment but if you start the year slow and build up as you get further through treatment. Just a visit to hospital and those long hospital corridors are likely to clock up a mile or two!
- Tier 4, you can exercise alone outdoors, or with members of your normal household or support bubble, following the 2 metre rule.
Advice for young people with cancer who are not clinically extremely vulnerable
You should follow the guidance for the general population and your local Tier or protection level (Scotland) and adhere to any temporary national lockdown measures.
Those at moderate risk from coronavirus include people who:
- are 70 or older
- have a lung condition that’s not severe (such as asthma, COPD, emphysema or bronchitis)
- have heart disease (such as heart failure)
- have diabetes
- have chronic kidney disease
- have liver disease (such as hepatitis)
- have a condition affecting the brain or nerves (such as Parkinson’s disease, motor neurone disease, multiple sclerosis or cerebral palsy)
- have a condition that means they have a high risk of getting infections
- are taking medicine that can affect the immune system (such as low doses of steroids)
- are very obese (a BMI of 40 or above)
- are pregnant – see advice about pregnancy and coronavirus
Unlike people at high risk, you will not get a letter from the NHS.
What to do if you’re at moderate risk
If you’re at moderate risk from coronavirus, it’s very important to follow social distancing advice to reduce your chances of catching or spreading the virus.
Not everybody can form a support bubble. However, on 2 December the rules changed to widen eligibility for forming one.
You can form a support bubble with another household of any size if:
- you live by yourself – even if carers visit you to provide support
- you are the only adult in your household who does not need continuous care as a result of a disability
- your household includes a child who is under the age of one or was under that age on 2 December 2020
- your household includes a child with a disability who requires continuous care and is under the age of 5, or was under that age on 2 December 2020
- you are aged 16 or 17 living with others of the same age and without any adults
- you are a single adult living with one or more children who are under the age of 18 or were under that age on 12 June 2020
You should not form a support bubble with a household that is part of another support bubble. Being in a support bubble means you can go inside each other’s homes, stay overnight, and you do not need keep two metres apart (unless you are clinically extremely vulnerable in Tier 4).
If you don’t live alone, you can create a ‘support bubble’ but only with someone else who does live alone – this means you can go inside each other’s homes, stay over, and you do not need to keep two metres apart. You can only do this with one other person, and they must not ‘bubble’ with any other households
You might be able to form a childcare bubble to provide or receive childcare from one other household if you live with someone under the age of 14. But you must not meet socially with your childcare bubble, and must avoid seeing members of your childcare and support bubbles at the same time, unless otherwise permitted by gathering limits in your tier. Clinically extremely vulnerable people are advised not to form childcare bubbles during the period of national lockdown.
Reasonable reasons for not staying at home Tier 4, if you are not clinically extremely vulnerable:
- Work and volunteering
- Essential shopping or accessing essential services
- Fulfilling a legal obligation
- Education and childcare
- To provide care for disabled or vulnerable people, includes respite care for looked after children.
- To attend a support group Maximum 15 people
- Exercise and recreation (but do not travel to an area in a different Tier – stay close to home)
- You can leave home for a medical reason, including to get a COVID-19 test, for medical appointments and emergencies, to be with someone who is giving birth, to avoid injury or illness or to escape risk of harm (such as domestic abuse),or for animal welfare reasons – such as to attend veterinary services for advice or treatment. This also includes visiting someone who is dying or in a hospice.
- Communal worship and Life events such as weddings and funerals (check guidance on numbers who can meet and Tier Specific restrictions)
When you are outside keep two metres apart from other people, and wash your hands when you get home
Don’t go to any group events, including gatherings of friends and families in
Completely avoid contact with anyone who is displaying symptoms of COVID-19
You should go to any medical appointments your cancer team asks you to
General guidance for people with cancer
We know that even though shielding is different now than in the first national lockdown for extremely vulnerable groups, your clinical team knows your individual circumstances and will advise on what is right for you. If you’re undergoing cancer treatment whether or not you are in the clinically extremely vulnerable group, you are still likely to be advised to take extra precautions to protect you from all types of infections, not just COVID-19. This could mean your local clinical team still advises you to avoid crowds, not attend university, college or work, and distance yourself if household members are unwell with things like flu, D&V, chicken-pox, shingles or cold sores, and certainly if they have any COVID-19 symptoms.
Talk to your clinical team if you have a scheduled hospital or other medical appointment during this time. They will make sure you continue to get the care you need and will tell you which appointments you need to go to.
Your clinical team may tell you that you no longer need to shield if they believe you are no longer considered to be ‘clinically extremely vulnerable’. It could be that you were in the clinically extremely vulnerable group last year but you are now far enough past your last treatments to be less vulnerable now. Contact them if you have any questions about this.
Letters were also sent out to people who had other conditions that put them in the ‘extremely vulnerable’ category as well. If you have one of these conditions you may have had a letter for that. If you are at all unsure, speak with your clinical team so they can advise you.
Following the shielding advice can be difficult because it restricts what you can do. That can be hard for a lot of reasons, including what it means for your family, and the effect it has on your mental health. Shielding is a personal choice. Have a chat with your clinical team so they can advise you and help you make the decision about whether or not to shield. Government also states that the guidance on shielding for the clinical extremely vulnerable continues to be advisory. You can opt for social distancing if there are reasons why you feel unsafe shielded at home.
Cancer treatment is continuing, but some changes are being made to the way services are delivered. This is to keep patients and hospital staff safe.
- Hubs have been set up across the country to support hospitals to make sure that people receive the treatment that they need. You will still be under the care of your main hospital if your treatment moves to one of these hubs. You should contact your usual clinical team if you have any questions about your treatment.
- Most hospitals have started to use telephone consultations to help people avoid long waits in clinics and for treatment. You may get a phone call to arrange your treatment this way.
- Some patients may have their chemotherapy at home. In some areas mobile units have been set up to deliver chemotherapy, so you may be asked to go to one of these. If you’re on radiotherapy you may have fewer appointments. This cuts down the number of visits to hospital but allows treatment to continue.
Speak to your clinical team if you have any concerns or questions about your treatment.
There are currently no medicine shortages as a result of COVID-19. This means your treatment centre doesn’t have any problems getting the cancer drugs needed to treat you.
If you have difficulty collecting medicines you can ask your social care worker to refer you to the NHS Volunteer Responders scheme to have medicines collected. This service will continue after 1 August.
A National group called “Healthwatch” working with “National Voices” an NHS service user advisory group have completed some research on digital outpatient appointments during the coronavirus lockdown. They produced a report and a good practice guide for patients and professionals. This advice is from their report:
- Ask for a timeslot for when your remote consultation will take place
- Let your health care provider know how you prefer to talk by phone, video or in person
- Find somewhere quiet and confidential and, if this isn’t possible or is tricky, make this clear when you are making your appointment
- Start with a phone call if you’re not confident with video technology
- Ask for help if you need it and, if possible, do a practice run with a friend
- Take some time to prepare in advance, consider what you want to say and key questions you would like to ask
- Ask your health care provider to summarise the next steps at the end of the appointment
- Remote consultations can be useful for routine appointments or ongoing care with a health care practitioner
- Not all appointments are suitable for remote consultations, if you would like to see someone in person please say so.
All hospitals are taking extra steps to ensure patients, staff and the public are protected from coronavirus and lots of infections that could be picked up in a hospital environment. You will see hand washing, hand sanitisers, surgical masks, gloves and sometimes gowns and visors being used by hospital staff. More space will be allocated between patients and a visitor to manage social distancing as far as is possible in hospital. You may also be screened for COVID-19 when you arrive. Cancer care teams know that your treatments make you vulnerable to infection and have been managing prevention techniques for decades before any of us had heard of coronavirus, so you can expect your cancer team to know how to keep you safe. If you do see someone not following government guidance, tell a healthcare professional you trust, or if you feel confident enough, tell the person you noticed they forgot something – we’re all human and in a busy day they may appreciate the reminder.
Travel to appointments and treatment by car if you can. Either driving yourself, or with someone who lives in the same house as you. If driving isn’t an option, use the form of transport that brings you into the least contact with people as possible.
If you think someone in your household might have coronavirus you should follow the government guidance. Let your clinical team know before you attend your appointment.
If you have symptoms of any infection or illness, including coronavirus, you should contact your cancer team as you would normally do. You should do this as well as calling 111 for advice about coronavirus symptoms.
This really depends on the type of cancer and the treatment you had. Most people make a full recovery after cancer treatment and their immune system either recovers fully or isn’t affected. Unless you fall into the clinically extremely vulnerable category, you’re not at more risk of serious illness if you get COVID-19.