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.

Correct as of 19/4/2021. 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. 

Am I clinically extremely vulnerable (CEV) due to my blood cancer diagnosis?

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 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 to confirm I am extremely clinically vulnerable but I think I am at risk. What should I do?

Following the announcement of the most recent lockdowns in late 2020/early 2021, all those of those who were clinically extremely vulnerable will have been written to again to explain the shielding advice.

Shielding has now been paused in most locations (see individual locations further down this blog) and so it is no longer necessary for you to seek out the letter to confirm your vulnerability to COVID-19. Two exceptions to this include if you are struggling to access a vaccination (please click here to read our COVID vaccination blog for more information) or if you cannot return to work due to it not being COVID safe.

Please get in touch with the advocacy team using the details at the end of the blog 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 data on COVID-19 in blood cancer patients is available as most people affected by blood cancer were protected from infection by shielding.

As shielding has been paused in most locations, you do not need to take any specific actions as a result of being told you are clinically extremely vulnerable. However, we strongly advise that you receive your vaccination when it is offered and also that you continue to take extra care to reduce contacts whilst vaccination of the general public is still underway. You can read more about going out and about safely in our blog here.

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 for work, we understand that this is a worry for you, especially if they are working as a key worker or somewhere with a higher risk of infection. 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.

NOTE: if you live in England, those you live with are also now eligible for a vaccine. This will help protect you as well as them. In other regions, please speak to your GP about the possibility of your household also being vaccinated.

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?

Will shielding be reinstated?

Shielding has now been paused in England. This means that those who were shielding can now return to work if they cannot work from home; those who can work from home should continue to do so wherever possible, as per the general guidance. You are also no longer advised to stay at home as much as possible, although it is advised you continue to take extra precautions in the meantime. Full details of the changes and more information can be found here: https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19.

We understand that this may be a concerning time for you. We strongly advise that you receive your vaccination when it is offered and also that you continue to take extra care to reduce contacts whilst vaccination of the general public is still underway. You can read more about going out and about safely in our blog here.

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

Yes, you can continue to be furloughed if you cannot work from home. The furlough scheme is currently in place until September 2021.

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

What support is in place to help me stay safe?

If you have any concerns about what activities you should or should not undertake as restrictions ease, contact your haematology team in the first instance.

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, the national lockdown has now come to end. Most of Scotland is in level 4, so shielding is currently in place until the 26th of April, when it is expected that the level will change.

Current advice is as follows:

  • 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 shielding is in place. This letter is called a shielding notification and can be shown to your employer without the need for a GP fit note.

There is a 5 level system (risk level 0 to 4) that indicates the concern about the spread of COVID-19 in individual areas. You can read more about the restrictions in each level here: https://www.gov.scot/publications/coronavirus-covid-19-protection-levels/.

The advice to the clinically extremely vulnerable changes as the levels change. At higher levels, you should take extra precautions to protect yourself; as the risk decreases (and therefore the level changes), the extra precautions necessary will reduce. More information on how to keep yourself safe at each stage of the restrictions easing can be found here: https://www.gov.scot/publications/covid-shielding/. We will also share the key points here as changes occur. You should remember this is guidance only and do what makes you feel comfortable. You can read more about going out and about safely in our blog here.

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 the 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, shielding has been paused. This means that you can go to work, if you cannot work from home, as long as the business is Covid-secure (has taken reasonable measures to minimise risk to employees). For other specific advice to take to keep yourself safe, please see the Welsh government website: https://gov.wales/guidance-on-shielding-and-protecting-people-defined-on-medical-grounds-as-extremely-vulnerable-from-coronavirus-covid-19-html.

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 in a period of transition between levels 4 and 3, the highest and second-highest levels respectively. The next change in guidance is expected on the 26th of April. You can read more about the current restrictions here: https://gov.wales/current-restrictions-summary.

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

Northern Ireland is easing restrictions in a stepwise fashion, although there are no formal risk levels or tiers. This means there is no longer 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.

Shielding has not been officially in place in Northern Ireland during the recent lockdown. This is because the government were advising people they can continue to go out for exercise, so they consider this not to be official shielding. However, we have formally been referring to this as shielding, because the clinically extremely vulnerable were advised that they should not go to work if they cannot work from home. This changed on the 12th of April, with people now advised to return to work if they cannot work from home.  You are still advised to avoid other places that are higher risk, such as shopping in supermarkets. Future steps will see the gradual easing of other elements of advice for CEV people and will be linked to easing of restrictions more generally. 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 https://www.nhs.uk/conditions/coronavirus-covid-19/self-isolation-and-treatment/.

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. If you would like to check this, please speak with your haematologist directly.

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

For support, you can also call our helpline: 08088 010 444, or use our WhatsApp service: 07500068065. If you prefer to email, please send your questions to support@leukaemiacare.org.uk. The helpline team will take your details and pass them onto the advocacy team.

Blog post published on: 17th March 2021

Blog post last updated on: 19th April 2021

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