Shielding for people with blood cancers – FAQs

The government have now issued full advice for all people considered at extra high risk of severe disease if they contract coronaviruses. We have broken this information down for you in this blog.

Correct as of 11/05/2020. 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.

The government have now issued full advice for all people considered at extra high risk of severe disease if they contract coronaviruses. The advice is that all people deemed especially high risk should be isolating themselves (now also called shielding) from others for a minimum of 12 weeks, or until further advice is issued.

Here is the full guidance website: 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.

NOTE: this guidance to shield is different from self-isolation because you have coronavirus symptoms. Please see What changes if I begin to have symptoms? below.

This document has been created to help you break down the advice from the website above and work out if the advice given applies to you.

What do recent government announcements mean for those who are shielding?

On the evening of the 10th of May, Boris Johnson made a televised statement, in which he gave some more details around lifting some of the restrictions currently in place on the general public (social distancing).  This was followed by a document entitled our plan to rebuild: the UK Government’s COVID-19 recovery strategy.

You can read this document here: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/884171/FINAL_6.6637_CO_HMG_C19_Recovery_FINAL_110520_v2_WEB__1_.pdf. This sets out information about what the general public should expect from the gradual lifting on restrictions, such as being able to leave the house more often.

Those who are extremely clinically vulnerable are mentioned in this document. It says that those who are shielding are advised to continue to do so. Therefore, please continue to shield if you are already doing so. The government expects this to last for some time yet, although has not put a time frame on this.  We will make sure to update you as soon as we know more.

We know it can be distressing to learn you or your family may need to shield at home for an indefinite period of time, especially as the rules change. Get in touch with us, using the details at the bottom of this blog, for further support, such as how to access our counselling fund or join a support group.

Does the shielding advice apply to me?

The government has advised 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 or on 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. We have been advised that 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. We are unable to confirm shielding procedures for individuals via any of our support services.

For example, those in long term remission from acute leukaemia or hairy cell leukaemia are likely to have a reduced risk over time, although it is not possible to say how long you need to be in remission for before the risk goes down. Also, it is possible that some patients with myeloproliferative neoplasms (patients with ET, PV or MF) or those with CML may not be at as a high a risk as the general advice suggests, but this depends on your individual circumstances and nobody can be sure of the risk due to the this virus being new. MPN voice has further guidance on their website here.

Again, we have been advised that 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. For further information, please contact Blood Cancer UK, Myeloma UK or Lymphoma Action for advice.

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

The government have been notifying affected individuals individually; some of you may have already got this information. We have been advised that any leukaemia patient could receive this letter or text. However, the letters or texts have taken longer than expected to reach you or may not reach you at all if there isn’t an accurate record of your diagnosis.

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.

Additionally, you should register yourself as high risk with your local support services (see where can I get support below), as this may trigger a letter to be sent to 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 or text but I don’t think I’m at risk. What should I do?

The NHS has indicated that they are taking a cautious approach, in that they are trying to reach the most vulnerable people as quickly as possible. This may have resulted in people who may not consider themselves at risk receiving letters. Read the full statement here: https://digital.nhs.uk/news-and-events/latest-news/statement-on-coronavirus-communications.

Additionally, the haematology community has also reiterated that patients should be cautious and shield until they have spoken to their own clinical team. Consider also whether you may have received a letter or text due to a condition other than your blood cancer. If you do not have another condition, then speak to your haematology team if you are still unsure if you should follow the shielding advice.

Even if you are not in the group of clinically extremely vulnerable people who need to shield, you should be extra careful when leaving the house.

There is a second group, or tier, of vulnerable people, also known as the moderate risk group. This is a group of people who do not need to shield, but have a higher than average risk of severe COVID. This includes older people and 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. The advice for this moderate group is that you take care extra care to stick to the social distancing guidelines issued by government.

What actions must I take to start and maintain shielding?

You must not leave your house, with immediate effect, including not fetching your own food or medicine, and no longer leaving the house to exercise.

Additionally, those you live with should isolate themselves from you in the house. This means you

must practise social distancing from each other, including :

  • staying a 2m distance from each other
  • sleeping separately and using shared spaces at a different time to them
  • using different towels, cooking utensils and cleaning equipment.

NOTE: Please see the government website for full details of how to isolate yourself from others in the house; this list above is just to give some examples. 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 have received feedback from patients that it is not possible to social distance from others at home. It is important that you try to stick to the social distancing measures as much as possible, to protect the person most at risk. You instead may choose to stay at home with them, but this is not necessary if you follow the above steps. Please contact the advocacy team (advocacy@leukaemiacare.org.uk) if you have any further questions.

Can I sit in my garden?

You are able to go in your garden, as long as it is not a shared garden.

Government advice is that shielded people should not be leaving the boundary of their household. However, it may also okay to go out if you live so rurally that you will not see anybody else; please bear in mind that government advice is to avoid unnecessary travel, so stick to places on your doorstep. It is against advice to go beyond your garden, even to exercise, if you live somewhere where others might be around, like any built up area. We would strongly advise you discuss your personal risk level with your team before you decide to exercise outside.

What changes if I or someone I live with begins to have symptoms?

f 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. 

Once the period of self-isolation for the symptoms is over, the person at extra high risk must return to shielding themselves from anyone outside the household for the full 12 week period. This includes if you were the one to have symptoms; there is not yet enough information to say whether it is possible to catch coronavirus more than once, so you should act as if it is (i.e. continue to shield) until more information is available from the government.

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.

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, you must socially distance yourself from them at all times. They could start shielding (not leaving the house) as well, although government guidance states this is not necessary if social distancing is maintained.

There are reports of some NHS trusts providing their staff with alternative accommodation, such as hotels, to reduce the risk of infection for the staff members household. Encourage the household member who is a key worker to speak to their employer or the local council to see if there are any alternatives near you, as community help has expanded hugely since the outbreak began.

If you are struggling to maintain social distancing at home and would like support with this situation, please get in touch with the advocacy team.

Should I leave the house for medical appointments?

If your appointment does not involve any procedures (e.g. intravenous treatments, blood tests), doctors are being encouraged to contact patients via the phone or using online means. If you have not been offered this option, please call the hospital or surgery that organised the appointment to ask if this can be done instead.

Some procedures may need to go ahead and you will be advised if your doctor thinks it is essential to see you. Please contact your haematology team if you are unsure whether your treatment or tests will continue, as they will be best places to advise. If you must have a procedure done, such as a blood test, specialists in each leukaemia type are currently working hard to prioritise patients and making sure your risk of infection is as low as possible whilst you are in hospital.

If you are travelling to hospital, avoid public transport if you can. You may be able to apply for our hospital travel fund to help you pay for transport; please see the website for full eligibility criteria: https://www.leukaemiacare.org.uk/support-and-information/support-for-you/hospital-travel-fund/.

Will my treatment change/be delayed?

The NHS is making preparations for all urgent cancer treatment to continue. All decisions made about treatments are based on the risk vs. the benefits you will gain from treatment. The coronavirus pandemic as meant that it is more risky for you to have a compromised immune system, something that is often a side effect of blood cancer treatments.

The decision as to whether your treatment is urgent, or whether it may be delayed or changed, is a decision that will be made between you and your clinician. General guideline are being developed for doctors to help them make these decisions in the new climate, and they should explain the basis of their decisions when discussing this with you.

Where can I get support if I have no one to fetch food or medicines for me?

We appreciate that there have been challenges with having supermarkets deliver food at this current time. However, it is important that you do not leave your home for this, or any, purpose whilst in self-isolation.

If you have family, friends or neighbours who live within a distance reasonable to you who can deliver your food for you (as long as they are also not high risk), please ask them to if they can help. They will need to leave the items at your doorstep, and you may like to disinfect the delivery on arrival.

If you normally receive care (e.g. washing, dressing, cooking), please see the government guidance page for more information on how to maintain and arrange your care throughout self-isolation.

The government has said that there will be services provided to care for those affected. If you live in England, there is a help service that you can sign up to here: https://www.gov.uk/coronavirus-extremely-vulnerable.

NOTE: you do not need to have received your letter or text confirming to you are at extra high risk in order to sign up, you can do so now. Additionally, someone can sign up on your behalf if you are unable to access the internet.

If you live in Scotland, further information can be found here: https://news.gov.scot/news/shielding-people-at-risk-from-coronavirus-1.

If you live in Wales, further information can be found here: https://gov.wales/get-coronavirus-support-extremely-vulnerable-person.

There is not official advice for Northern Ireland. Please get in touch with your local government if you feel you need extra support.

Additionally, local councils are working to set up local community help. Please do get in touch with your council to enquire about local initiatives.

Should I be worried about getting coronavirus from packaging on deliveries or food?

According to the government’s food safety website, it is very unlikely” that you can catch coronavirus from food. As COVID-19 is a respiratory illness, it is not known to be transmitted by exposure to food or food packaging. The Food Standards Agency (FSA) also states that cooking food at the right temperature and for the correct length of time will ensure that any harmful bacteria are killed.

When it comes to fresh produce, such as fruits and vegetables, do not use products containing any chemicals to clean them. The NHS says: When you wash vegetables, wash them under a running tap and rub them under water, for example in a bowl of fresh water. Start with the least soiled items first and give each of them a final rinse. Peeling or cooking fruit and vegetables can also remove bacteria”.

According to the World Health Organisation, the risk of catching the virus that causes Covid-19 from a package that has been moved, travelled, and exposed to different conditions and temperatures is also very low. Despite the low risk of contamination, if you feel particularly anxious about the possibility of the virus spreading on food packaging you can use antibacterial wipes or disinfectant spray before storing them away in your cupboards or fridge.

It is also important to wash your hands for at least 20 seconds with soap and water after handling any packaging.

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.

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