Updated shielding guidance for people with blood cancers – FAQs

There have a number of changes to guidance around COVID-19 in recent days across the UK. This blog will update you on any changes.

We will update this with further information as soon as possible. Please get in touch with us at advocacy@leukaemiacare.org.uk for further help. 

Does the shielding advice apply to me?

The government has advised, since March 2020 that all “people with cancers of the blood or bone marrow such as leukaemia, who are at any stage of treatment” are “clinically extremely vulnerable” to COVID-19. We have received confirmation that this also includes those who are in active monitoring (watch and wait), even if you have never been treated.

However, the government advice is broad and due to the need to act fast, it may not have taken into account the nature of different types of blood cancers. For example, those in long term remission from acute leukaemia or hairy cell leukaemia are likely to have a reduced risk over time, so there may come a point where shielding is not necessary. Also, it is possible that those with CML may not be at as a high a risk as those affected by other types of blood cancer, but this depends on your individual circumstances. Patients who are unsure about whether to shield should follow the shielding advice until they have spoken to their own haematologist for individual advice. We are unable to confirm whether or not an individual should be shielding through any of our support services.

Additionally, on the 16th of February, it was announced that shielding list was being expanded. An algorithm has been developed called QCOVID, based on those affected by COVID-19 so far. The original list was based on people with specific health conditions; those newly added to the shielding list have been added based on a risk score instead. The risk score is made up of several characteristics that make you more likely to be at risk of severe COVID-19, such as older age, deprivation and information about your general health. Therefore, there is a chance that some people affected by blood cancer may now be added to the shielding list if you have a high score from the algorithm, even if they were told they did not need to shield based on their blood cancer diagnosis alone. More information about this new algorithm is here: https://digital.nhs.uk/coronavirus/risk-assessment/population.

If patients are unsure about whether to shield, they should be shielding, as per government guidance, until they have spoken to their own haematologist for individual advice.

If you have been diagnosed with another type of blood cancer (lymphoma, myeloma etc.), please check the government guidance for full details of who is included and contact Myeloma UK, Lymphoma Action or Blood Cancer UK if you need further advice.

I’ve not received a letter, email or text but I think I am at risk. What should I do?

Following the announcement of the lockdown, all those of the shielded patient list will have been written to again to explain the shielding advice. If you have a diagnosis of a leukaemia, or have ever been diagnosed with leukaemia, but have no letter or text yet, you should follow still follow the shielding advice until you have checked whether the guidance applies to you. Please call your GP in the first instance, followed by your haematology team if the GP surgery are not able to help you.

In the meantime, we can support you to explain the situation to your employers if necessary. Please get in touch with the advocacy team (advocacy@leukaemiacare.org.uk) for more information.

I have received a letter, email or text but I don’t think I’m at risk. What should I do?

The shielding list was designed to cover as many people who were potentially at risk as possible, at a time when little was known about the virus. This may have resulted in people who may not consider themselves at risk, or whose doctor believes they are not extremely vulnerable, receiving letters. Some additional information has come to light about risk, although not much as most people affected by blood cancer were protected by shielding.

Consider also whether you may have received a letter or text due to a condition other than your blood cancer. The NHS has expanded the shielding list to be who scored as high risk based on a new algorithm that takes into account lots of factors, such as your age or general health. Your GP should be able to tell you if you have been added to the list recently for this reason.

Even if you are not in the group of “clinically extremely vulnerable” people who need to shield, you should continue to be extra careful about protecting yourself from COVID-19. There is a second group of vulnerable people, who do not need to shield but have a higher-than-average risk of severe COVID-19. This those who are usually eligible for the annual flu vaccinations. This group includes all blood cancer patients who are not covered by the shielding advice.

A member of my household has to go to work outside the house. What precautions are needed?

If you are living with someone who is leaving the house, we understand that this is a worry for you. They could start shielding (not leaving the house) as well, although we understand this may not be possible for everyone. You should take extra precautions at home to avoid becoming infected and also ensure that your household member is keeping as safe as possible when travelling to and from work and whilst at work.

If you require further support with this, please contact our advocacy team using the details at the end of the blog.

Should I leave the house for medical appointments?

Yes, you should continue to attend any medical appointments recommend by a healthcare professional. The NHS is open, including GP surgeries. If you are concerned for your safety or want to discuss precautions in place for your appointment, you should speak to the person or organisation that organised the appointment. For hospital appointments, contact details are usually provided on the appointment letter.

If you are invited for a COVID-19 vaccine or require a COVID test, you should also attend these appointments.

We understand that remote consultations and appointments can be a challenge. For tips on making the best of appointments by phone, you can review our webinars here: https://www.youtube.com/watch?v=P63CoHL3j1E&list=PLp_sNUdOYHP6Mo_BrghHBOCJO_u-GTpho&index=5&t=8s and https://www.youtube.com/watch?v=Qi-zeedZbFg&list=PLp_sNUdOYHP6Mo_BrghHBOCJO_u-GTpho&index=3

1. I live in England, what is the status of shielding?

As of midnight, on the 5th of January 2021, all of England has been placed into a lockdown, where you legally obliged to stay at home. You are only able to leave the house in essential circumstances, such as to buy essentials or exercise.

On the 22nd of February, the government published its plan to end this lockdown in England by the 21st of June at the earliest, with a gradual relaxation of restrictions over several weeks. To find out what this means for those shielding, please see below.

Will shielding be reinstated?

Shielding has been reinstated under the national lockdown and those affected should begin receiving letters and/or emails informing them of this. However, we anticipate there are likely to be delay in the letters being sent out by the NHS, as well as delay due to the post being extremely busy. If you are expecting a letter, have been advised to shield in the past or have become clinically extremely vulnerable recently due to a new diagnosis, you should consider shielding immediately.

The letter had an original end date of 21st of February. However, the Deputy Chief Medical Officer has since announced that this has been extended to the end of March. This has been communicated through email, text and letters, but there may be a gap between the end date of the first letter and getting the new communication. Please get in touch if you need support with this.

In the announcement of the 22nd of February, the government said that it anticipates that shielding will not be needed after the end of March. It has said that it will communicate the final decision closer to the time, with further advice on how to keep yourself safe as a clinically extremely vulnerable person. We will update this blog as soon as we have further information about the next steps you should take.

Should my children still go to school?

Schools are to be closed under the latest restrictions announced. We will provide further updates for the future when these become relevant.

Can I still be furloughed if it is not safe for me to return to work?

Yes. The advice for the clinically extremely vulnerable states that employers are able to use to the furlough scheme for vulnerable patients who cannot work at home. The furlough scheme is currently in place until March 2021.

Please contact our advocacy team if you need further support with your employment situation.

What support is in place to help me follow this guidance?

The NHS volunteers scheme continues and should contact them in the first instance if you need support in getting food or medicines. You can contact them here: https://nhsvolunteerresponders.org.uk/services. Your local council may also be able to assist. You can also get in touch with our advocacy team for further information.

2. I live in Scotland, what is the status of shielding?

In Scotland, an announcement on the 22nd of October by the First Minister set out a new 5 level system (risk level 0 to 4) that indicates the concern about the spread of COVID-19 in individual areas. Each level comes with specific restrictions for both the general public and the clinically extremely vulnerable group. You can read more about the restrictions in each level here: https://www.gov.scot/publications/coronavirus-covid-19-protection-levels/pages/overview/.

From Tuesday 5th of January 2021, the whole of mainland Scotland will move from the tiered system to a national lockdown. This means that everyone is legally obliged to remain at home except for essential reasons. The islands will remain at tier level 3. Further information can be found here: https://www.gov.scot/publications/coronavirus-covid-19-stay-at-home-guidance/.

Has shielding restarted again under the national lockdown?

The Chief Medical Officer will write to everyone on the shielding list during the week beginning 4 January to set out advice. Here is the additional advice that applies to those shielding:

You should stay home as much as possible but you can still go out for exercise.

You can go out for essential shopping or medicines if you cannot get these through other means, although you should ask for assistance or use priority online services where possible.

You should not take public transport.

You should continue to work from home if you can. If you cannot work from home, you should not go to work.  The letter you will receive from the Chief Medical Officer acts as a fit note for as long as lockdown restrictions are in place. This letter is called a shielding notification and can be shown to your employer without the need for a GP fit note.

Should my children still go to school?

Schools are to be closed under the latest lockdown restrictions announced for the mainland. We will provide further updates for the future when these become relevant.

What support is in place to help me follow this guidance?

The government has also said that there will be support in place to help everyone stick to the additional guidance, although information on this is currently limited. Please contact your local council, contact our Advocacy Team on the details at the bottom of this blog or call the COVID-19 helpline for Scotland (0800 111 4000) if you are concerned about your ability to follow guidance without support.

I live in the Tier 3 island areas. What is the advice for me?

There is advice available on extra activities you should do to keep yourself safe as a clinically extremely vulnerable person, if you are living on an island where there are fewer restrictions at present:

Limit meeting people outside your own household, avoid indoor public spaces.

Strictly follow the guidelines when shopping and limiting the number of times you go to a shop. Shop at quieter times.

If you cannot work from home, speak to your employer to ensure all appropriate protections are in place. If they are not, discuss getting a fit note with your GP or clinician.

Parents or guardians of vulnerable children should discuss with their GP or clinician whether children should still attend school.

You can read more information here: https://www.gov.scot/publications/coronavirus-covid-19-protection-levels/pages/protection-levels-by-area/ (select your level down the left hand side, then scroll to “shielding”).

3. I live in Wales, what is the status of shielding?

In Wales, there is a nationwide system of alert levels, where the whole of Wales is subject to restrictions under the current alert level in place. Wales is currently in alert level 4, the highest possible level. This means you are asked to stay at home wherever possible, you should not meet with anyone you do not live with, indoors or outdoors, and many retail and hospitality venues are closed. You can read more about what the tiers mean generally here: https://gov.wales/sites/default/files/publications/2020-12/alert-levels-in-wales-simple-guide.pdf.

In addition to level 4 restriction, the Welsh government has announced that shielding has been reinstated in Wales. This means that the clinically extremely vulnerable are advised not to go to work or school. However, you are still encouraged to exercise outdoors and also to attend medical appointments. The Chief Medical Officer will write to those affected asap, but this is likely to be delayed due to the time of year and delays within the postal system, so please follow the advice to shield in the meantime. Shielding was originally in place until the 21st of February, but this has now been extended until the 31st of March and you should receive further communication to confirm this soon.

For more information on shielding in Wales, please see this webpage: https://gov.wales/guidance-on-shielding-and-protecting-people-defined-on-medical-grounds-as-extremely-vulnerable-from-coronavirus-covid-19-html.

4. I live in Northern Ireland, what is the status of shielding?

Northern Ireland is in a national lockdown. This includes a legal requirement to stay at home, unless for essential journeys. Further information can be found here: https://www.nidirect.gov.uk/articles/coronavirus-covid-19-regulations-guidance-what-restrictions-mean-you.

The Northern Irish government has said shielding is not currently in place in Northern Ireland. This is because they are not advising people not to go out at all; instead they are encouraging vulnerable people to continue to go out for exercise. However, clinically extremely vulnerable are advised that they should not go to work if they cannot work from home. If this applies to you, the Chief Medical Officer will be writing to you to confirm this. The latest information can be found here: https://www.nidirect.gov.uk/articles/coronavirus-covid-19-guidance-clinically-extremely-vulnerable-and-vulnerable-people.

5. What happens if I or someone I live with begin to show symptoms?

If anybody in the house starts to show symptoms of coronavirus, then you all must start following the self-isolation guidance for suspected coronavirus. This includes separating the person displaying symptoms from other people within the household. Further details here.

If you, the extra high-risk person, develops symptoms, government guidance is to use the 111 service, either online or by calling, to seek further advice. You may also like to let your haematology team know, in case they have any advice for you too. This will also help teams to keep an accurate record of patients who have had coronavirus.

6. I have been diagnosed in the last 6 months; will I be told what I need to do?

All blood cancer patients who have been diagnosed in the last 6 months are highly likely to be included in the clinically extremely vulnerable population, as these definitions have not changed since March at the time of writing. If you would like to check this, please speak with your haematologist directly.

7. Information about the free vitamin D scheme in England and availability in the rest of the UK

Vitamin D is vital for healthy bones and helps your body absorb calcium. The best way to get vitamin D in the UK is to spend a short amount of time in sunlight (although you can get some from certain foods). However, this is difficult in winter, as the sun is not strong enough in the UK at this time of year. For this reason, it is recommended that everyone in the UK should take vitamin D supplements from October to March.

There is an additional concern this year that those who have been shielding may be even more likely to be lacking in vitamin D, due to spending less time outdoors over the spring and summer, as well as more time indoors over the winter. To combat this, those who have been shielding in England are being offered vitamin D supplements. You can sign up to receive these here: https://www.nhs.uk/conditions/coronavirus-covid-19/people-at-higher-risk/get-vitamin-d-supplements/. You will need your NHS number, which can be found on any letter regarding shielding.

We are not currently aware of similar schemes in Scotland, Wales or Northern Ireland. Many cancer patients receive vitamin D on prescription; if this is the case, please do not order any further tablets. Do not take an extra dose, as too much vitamin D can be dangerous. It is important to stick to the recommended dose.

There may be a few groups of people who shouldn’t have vitamin D. This includes people affected by kidney disease and kidney stones, for example. Further information on taking vitamin D safely can be found here: https://www.gov.uk/government/publications/vitamin-d-supplements-how-to-take-them-safely/vitamin-d-supplements-how-to-take-them-safely. Additionally, there are some cancer patients who have high calcium levels as a result of their cancer, and should not take vitamin D without taking further advice. This is most common in lung, breast, prostate and kidney cancers and myeloma patients. However, it may happen to people with other types of cancer; these people will require medication and likely to be already aware of their condition. Further information is available here: https://www.cancerresearchuk.org/about-cancer/coping/physically/blood-calcium/high-calcium-people-cancer. Please seek advice from your care team if you are unsure if this applies to you.

For more information about self-isolation, including help finding financial support, dealing with employers and assistance with the government support, please email advocacy@leukaemiacare.org.uk.

You can also call our helpline: 08088 010 444, or use our whatsapp service: 07500068065. The helpline team will take your details and pass them onto the advocacy team.

Blog post published on: 6th January 2021

Blog post last updated on: 25th February 2021

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