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 22/06/2020. 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 until 30 June 2020,  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. 

Please scroll to the 5th and 6th question for information on the most recent government announcements.  

1. 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 or if any communications from the NHS are correct for them, 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.

2. 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 contact us using the details at the bottom of the blog for more information.

3. 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 otherwise 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.

4. What do I do if I have got a text saying I don’t need to shield anymore?

There have been media reports that some people received text messages saying they no longer needed to shield. These were reported to come from a request by the NHS in early April, where they asked GPs to double check that the list of shielded patients was accurate.

The criteria for who should be shielding has not changed. If you received one of these text messages, please call your GP or haematologist to discuss before making any changes.

5. What actions must I take to start and maintain shielding?

Note: this advice is correct as of the date at the top of this blog. If you are looking for information on future changes, please move to the next question.

You must stay at home as much as possible, including not fetching your own food or medicine. However, depending on where you live, recent changes to the shielding guidance means you can now leave your house to spend time outdoors once a day if you want to (see the next question for further details by location).

The announcement on the 11th of June that people living alone can visit another household at home does NOT apply to shielded people.

Additionally, those you live with should isolate themselves from you in the house to help you shield. 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 us using the contact details at the bottom of the blog if you have any further questions.

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

The government guidance on shielding has been updated, but the principles behind shielding remains the same. The idea is that you stay at home as much as possible to lower your risk of catching COVID-19, because you are at a higher risk of complications should you catch it.

However, what you are or are not advised to do whilst shielding now varies by where you live. There are also planned changes over time, so we will make sure we update advice as we go along.

England

In England, as of 1 June 2020, people who have been advised to shield can now spend time outdoors. Please take into consideration the following precautions, if you decide to spend time outdoors:

  • It is advised to only go out once a day
  • Maintain strict social distancing, this includes keeping 2 metres apart from others.
  • If you live with others, you can go outside with these members of your own household .
  • If you live alone, you can spend time outdoors with one other person from a different household, whilst maintaining social distancing .
  • Avoid all non-essential face to face contact. Avoid supermarkets and pharmacies (support is still available for all those who are shielding).  Do not attend any gatherings, including  meeting with groups of family or friends.

On Monday 22 June, further updates to the shielding guidance were announced. The aim is to relax the shielding guidance in stages. From 6 July 2020, the following changes have been made for people who have been advised to shield:

  • You can meet in a group of up to 6 people outdoors, this includes people from different households with strict social distancing.
  • If you live alone or with dependent children under 18, you can form a ‘support bubble’ with one other household. This means you can spend time together indoors without needing to social distance.
  • You no longer need to social distance from other household members

It is still important to keep in mind the following precautions:

  • Follow strict social distancing outdoors
  • This new advice only applies from the 6th of July, when it is expected to be safer for shielding people to meet with others. Please continue to shield as per the previous advice until then.

Scotland

In Scotland, the shielding period has been extended to at least 31 July 2020. This will be reviewed regularly.

There has been further updates to the shielding guidance in Scotland. As of 18 June 2020, people that have been advised to shield can now go outside. From 19 June 2020, people shielding can take part in non-contact outdoor activities. Please keep in mind certain precautions when going outside:

  • Avoid entering indoor areas or meeting other people inside (there remains a risk of infection in indoor and crowded places)
  • Avoid supermarkets and pharmacies (support is still in place)
  • You can meet one other household outdoors (no more than 8 people)
  • Strict physical distance of two metres should be maintained from others
  • Practice strict hand hygiene
  • Choose quite times and areas

Aim of stay within your local area (broadly within 5 miles)

Wales

In Wales, the shielding advice is in place until at least 16 August 2020.  The Chief Medical Officer will provide letters with updated advice beyond the shielding end date. People advised to shield in Wales, can go outside for exercise as many times as they like, keeping in mind certain precautions:

  • You can go outside on your own, with household members or with people from another household  (with strict social distancing)
  • Advised to avoid gathering of large numbers of people, including weddings and other celebrations.

Northern Ireland

In Northern Ireland, shielding will be paused on the 31st of July (see next questions for further details). There has also been a slight update to the shielding advice in the meantime. From 8 June, people advised to shield are now able to leave the house and spend time outdoors, again with certain precautions:

  • Strict social distancing
  • You can spend time outdoors with members of your household
  • If you live alone, you can meet one other person (ideally the same person each time) from another household (with social distancing)

It is important to note that any changes to the shielding guidance are not mandatory to follow. If you are worried/anxious about going outside, please discuss these concerns with your GP or haematology team.

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.

7. What will happen when shielding ends for those living in England and Northern Ireland?

According to the latest government announcements in England, from 1 August 2020, people will be advised to stop following the shielding measures and instead adopt strict social distancing. This means:

  • You can go outside to buy food, to places of worship and for exercise, as long as strict social distancing is maintained. (It is still advised to stay at home where possible and remain cautious if you do go out).
  • If you cannot work from home, you can return back to work (as long as your workplace is COVID-safe)
  • Children who are clinically extremely vulnerable can return back to their education settings if needed (ensuring they maintain strict hand washing practice and social distancing).
  • The national shielding service, supplying food and medicine boxes, will be stopped. Other forms of support will remain, this includes priority supermarket delivery slots and the NHS Volunteer Scheme. Other local volunteer schemes will also continue.

The government’s decisions to ‘pause’ the shielding guidance in England from 1 August 2020 are based on the latest evidence showing reduced levels of Covid-19 infections in the community. If you are currently on the shielding list, you will receive a letter outlining the updated advice. 

In Northern Ireland, shielding is also very likely to be paused from 31 July 2020. Support for those shielding will end and you will be expected to return to work if it is a COVID-safe environment. You can find more information here: https://www.nidirect.gov.uk/articles/coronavirus-covid-19-pausing-shielding-extremely-vulnerable-people

Whilst Wales and Scotland have extended the shielding end date, there is not yet information on the plans for shielding patients after these dates. We will add them to this blog when we have an update.

In the meantime, please get in touch if you require further support, details can be found at the bottom of this blog.

8. What changes if I or someone I live with begins to have 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. 

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.

9. 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/.

10. 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.

11. 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 shielding.

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 shielding.

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. Once you have registered on this link, your data will be shared with supermarkets, making you eligible for priority delivery slots. You can also contact and get support from the NHS volunteer responders, by calling 0808 196 3646 to arrange volunteer support.

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://www.gov.scot/publications/covid-shielding/pages/food-and-essential-supplies/

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

If you live in Northern Ireland, further information can be found here: https://www.nidirect.gov.uk/articles/coronavirus-covid-19-advice-vulnerable-people

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

12. 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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