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Advice about coronavirus (COVID-19) for people with Waldenstrom’s macroglobulinaemia (WM)

Not Today COVID-19
Latest update: 22 June 2020

The coronavirus (COVID-19) pandemic has affected patients with blood cancers across the globe. With the outbreak developing daily, we want to make sure everyone affected by WM receives the information they need during this time.

The following advice has been produced for WMUK by Dr Shirley D'Sa, WM expert at UCLH and WMUK trustee, and incorporates the latest government guidance.

There is some evidence to suggest that there is an increased risk of contracting COVID-19 infection in adults with cancer, due to their lowered immunity. They may also experience more severe COVID-19 infections for the same reason.

However, there remain more questions than answers as this is a brand new ‘first-time in humans’ infection, since the first patient contracted the virus in China in November 2019.

At present, Public Health England (PHE) and other NHS bodies are taking a cautious view on all patients affected by bone marrow diseases including those with lymphoma and placing them in the ‘extremely vulnerable category’.

This is a pragmatic but sensible approach until we know more in the coming weeks and months, so as to keep people safe.

It should be noted that the general advice we are giving is relating to NHS England, and that the devolved nations have different processes, especially Scotland. Links to government advice, information for health professionals and advice for other parts of the UK can be found here.

What is COVID-19?

It is a virus that affects the respiratory system and can cause lung infections.

There are currently no treatments or vaccines for COVID-19, however many clinical trials are under way with this in mind and if you are admitted to hospital for any reason and found to have COVID-19, you may be offered to participate.

Like the common cold, COVID-19 infection usually occurs through close contact with a person with the virus, via cough, sneezes or hand contact. The most common ways of transmitting the virus is being studied at present, as is the advice regarding the use of masks.

Wash your hands frequently to reduce the risk of contamination from surfaces.

Latest Government advice on shielding for those classified as "extremely vulnerable"

Recently, the UK Government advised that you can spend time outdoors, if you wish, with your own household, or if you live alone with another household. Following this, and alongside current scientific and medical advice, the UK Government is planning to relax shielding guidance in stages.

Those who have received a shielding patient letter remain in the Clinically Extremely Vulnerable category and should continue to follow the updated guidance for the clinically extremely vulnerable. If incidence does not rise this guidance will be updated on 1 August.

Shielding and other advice to the clinically extremely vulnerable has been and remains advisory.

What are the changes?

Those who have received a shielding patient letter remain in the Clinically Extremely Vulnerable category and should continue to follow the updated guidance for the clinically extremely vulnerable. If incidence does not rise this guidance will be updated on 1 August.

What guidance should I be following from 6 July?

From 6 July, the guidance will change so you can meet in groups of up to six people from outside your household – outdoors with social distancing. For example: 

  • You may, if you wish, meet in a group of up to 6 people outdoors, including people from different households, while maintaining strict social distancing; 
  • You no longer need to observe social distancing with other members of your household;
  • In line with the wider guidance for single adult households (either an adult living alone or with dependent children under 18) in the general population, you may from this date, if you wish, also form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other's homes, including overnight, without needing to socially distance. This is a small advisory change that brings those affected a step nearer others in their communities. However, all the other current shielding advice will remain unchanged at this time.  the guidance for the clinically extremely vulnerable will be relaxed to allow shielded individuals to meet up to 5 people from other households outdoors, socially distanced, and to form support bubbles if they live alone or are a lone adult with a dependent under 18.

From 1 August, you will no longer need to shield, and the advice will be that you can visit shops and places of worship, but you should continue maintaining rigorous social distancing:

  • The advice to ‘shield’ will be paused. From this date, the Government is advising you to adopt strict social distancing rather than full shielding measures. Strict social distancing means you may wish to go out to more places and see more people but you should take particular care to minimise contact with others outside your household or support bubble. 
  • You can go to work, if you cannot work from home, as long as the business is COVID-safe;
  • Children who are clinically extremely vulnerable can return to their education settings if they are eligible and in line with their peers. Where possible children should practise frequent hand washing and social distancing;
  • You can go outside to buy food, to places of worship and for exercise but you should maintain strict social distancing; and
  • You should remain cautious as you are still at risk of severe illness if you catch Coronavirus, so the advice is to stay at home where possible and, if you do go out, follow strict social distancing.

Why has the advice changed for those classed as clinically extremely vulnerable? What is the evidence base for this decision?

  • Each step towards relaxing the shielding guidance should be taken carefully. People in this group are still at risk of severe illness if they catch coronavirus and should continue to take precautions, but as the risk of catching coronavirus is now sufficiently low, the Government believes that the time is now right to further relax the advice.
  • The latest epidemiological data from the ONS COVID-19 Infection Survey shows that the chance of encountering coronavirus in the community has continued to decline. Four weeks ago, on average only one person in 500 had the virus. Last week it was even lower at less than one in 1700. In addition, a test and trace system is now in place, including within schools, and there are robust measures in place to manage potential areas of higher risk.

Will these changes be reassessed before 1 August?

The latest scientific evidence shows that the chance of encountering coronavirus in the community has continued to decline. If this trend continues as expected, the risk levels to those shielding will be low enough for the guidance to be further relaxed from 1 August. The government regularly monitors this position and if the rates of infection in the community rise, then it may be necessary to advise that more restrictive measures should be taken for people at highest risk from COVID-19 to keep themselves safe.

I’m worried about catching coronavirus – am I still at significant risk?

Clinically extremely vulnerable people are still at risk of severe illness if they catch coronavirus and should continue to take precautions, even as the levels of coronavirus in the community continue to decline according to the latest epidemiological data from the ONS COVID-19 Infection Survey. Four weeks ago, on average only one person in 500 had the virus. Last week it was even lower at less than one in 1,700.

People should continue to socially distance as much as possible and always robustly practise good, frequent hand washing.

Are you planning on telling us to ‘shield’ again in the future?

The latest scientific evidence shows that the chance of encountering coronavirus in the community has continued to decline. The government regularly monitors this position and if the rates of infection in the community rise, then it may be necessary to advise that more restrictive measures should be taken.

The guidance for the clinically extremely vulnerable is advisory

How will people know that they should start shielding again?

Those who have received a shielding patient letter remain in the clinically extremely vulnerable category and should continue to follow the guidance on ‘shielding and protecting people who are Clinically Extremely Vulnerable’.

This guidance note will continue to be updated to reflect the most recent advice from the government. If there is a significant change to the advice, the Government will write to all patients who are clinically extremely vulnerable setting out any changes to advice before they are made

Is it possible that some regions may have to return to shielding in the future?

The NHS currently manages a national Shielded Patient List in England. The variation in R across the country has been quite limited to date, so a national approach continues to be appropriate. The government regularly monitors this position and will continue to be led by the scientific evidence

Why is the advice for England different to the advice for other parts of the UK?

As far as possible the conditions that means someone is advised to shield have been consistent between the four UK nations. Each country has slightly different health systems and ways of recording health data, so small differences may arise in implementation.

Each devolved administration has been working to a slightly different timeline on updating their shielding guidance based on when measures were first introduced.

Chief Medical Officers will be monitoring any changes in cases or R rates in each nation and could change their advice depending on how the risk levels change in each nation.

Is my name being kept on a shielding list? Why?

The NHS will continue to maintain the Shielded Patient List allowing us to maintain targeted advice and support to those who are most vulnerable and to change advice and support if incidence was to rise significantly.

Does my whole household have to shield with me until 1 August?

In line with the current public health advice, those living with clinically extremely vulnerable people are not advised to shield themselves. They should support those shielding and carefully follow the guidance on staying alert and safe (social distancing).

The Government has also published guidance to help them understand how to protect the person who is shielding. The guidance for the clinically extremely vulnerable continues to be advisory.

Can I see my family and friends?

From 6 July, guidance for extremely clinically vulnerable people will change to advise that those shielding may wish to spend time outdoors in a group of up to 6 people, including people they do not live with, if they choose to do so. If you do go out, you should take extra care to minimise contact with others by maintaining social distancing. This can be in a public outdoor space, or in a private garden, uncovered yard or terrace.

Additionally, those who are shielding will be able to create a ‘support bubble’ with one other household, as long as one of the households in the ‘bubble’ is a single adult household (either an adult living alone or with dependent children under 18). All those in a ‘support bubble’ can spend time together inside each other’s homes, including overnight, without needing to maintain social distancing.

Can I exercise outside?  If so, how often and for how long?

Yes, from 1 June the shielding guidance was updated to advise that those classed as clinically extremely vulnerable may wish to spend time outdoors, including for exercise. From 6 July, this can be in a group of up to 6 people (including people they don’t live with).

There is no advised limit to how often and how long to spend outside, that is up to you, but you should follow social distancing guidelines and always robustly practise good, frequent hand washing.

Can I drive to exercise?

From 6 July the advice for those classed as clinically extremely vulnerable remains that you no longer need to maintain social distancing with people in your household or support bubble (where applicable). Therefore, you can drive to an outdoor location alone or with members of your household or support bubble.

Can I let people into my house now?

If you are not in a ‘support bubble’ with another household, you must not meet other people indoors, including in their home or your home, except for specific circumstances set out here: https://www.gov.uk/guidance/meeting-people-fromoutside-your-household

Any essential carers or visitors who support you with your everyday needs can continue to visit unless they have any of the symptoms of COVID-19 (a new continuous cough, a high temperature, or a loss of, or change in, their normal sense of taste or smell).

Essential carers coming to your home should follow advice on good hygiene: wash their hands with soap and water for at least 20 seconds on arrival to your house and often while they are there (or use hand sanitiser), avoid touching their face, catch any coughs or sneezes in a tissue (or their sleeve), and put used tissues immediately in the bin and wash their hands afterwards. They should maintain social distancing where close or personal contact is not required and where this is possible.

From 6 July, who can I ‘bubble’ with?

From 6 July, those who are shielding will be able to create a ‘support bubble’ with one other household, as long as one of the households in the bubble is a single adult household (either an adult living alone or with depending children under 18). Support bubbles must be exclusive – you should only form a bubble with one household and they should only be in a bubble with you.

What can you do in a ‘support bubble’?

Forming a support bubble with another household means you can meet – indoors or out – without needing to maintain social distancing. You can also stay overnight as if you lived with that household. This means you can have closer contact with those in your support bubble, which should help provide additional support to those who need it. You should continue to adhere to social distancing guidelines in full with other households.

The risk of infection rises with the number of people in a bubble and the number of interactions you have with people you do not live with, so it’s important to take measures to try and protect against this. This means that support bubbles must be exclusive – you should only form a bubble with one household, and they should only be in a bubble with you.

You must not gather indoors or stay overnight with anyone outside of this bubble and should not change your bubble. If you are in a single adult household, you may also want to consider the size of the household you choose to make a bubble with, and where possible, choose a small household. Everyone in a support bubble should isolate when one member of the bubble becomes symptomatic or tests positive for coronavirus.

Can I ‘bubble’ with another shielding household?

Yes, all single adult households can bubble with one other household, including households containing other people who are shielding. Similarly, shielding people living in a household can bubble with any single adult household.

Is bubbling safe?

There are key principles for how you can form a support bubble safely. These are critical to keeping you – and your friends and family – safe and saving lives: o support bubbles must be exclusive – you should not change who is in your bubble or have close contact with anyone else you do not live with.

This is critical to keeping you, and your family and friends, safe o if you or someone in your support bubble is showing coronavirus symptoms, or otherwise self-isolating, everyone in your support bubble should stay home.

If you or a member of your support bubble is contacted as part of the test and trace programme, the individual contacted should stay at home. If the individual becomes symptomatic, everyone in the support bubble should then isolate.

Does this mean I can go shopping/to the pharmacy?

The current advice to those who are clinically extremely vulnerable is to not spend time in any other buildings or covered areas apart from your own home (apart from if you are in a ‘support bubble’ from 6 July).

This will change from 1 August, when guidance for this group will be brought in line with that for the clinically vulnerable group. In practice, that means that you should stay home as much as possible, but you can go outside, including to the shops, providing you take particular care to maintain social distancing.

Anybody who is shielding, or self-isolating can seek support from the NHS Volunteer Responders for help with shopping or medication. Simply call NHS Volunteer Responders on 0808 196 3646 (8am to 8pm) to arrange this.

I have WM but I have NOT been identified as "extremely vulnerable" by the NHS: what can I do?

You should have received a letter entitled 'Important advice to keep you safe from coronavirus’. The criteria for cancer patients were carefully defined, based on those with greatest clinical risk. Those who have received a shielding patient letter remain in the clinically extremely vulnerable category and should continue to follow the guidance on ‘shielding and protecting people who are Clinically Extremely Vulnerable’.

You can opt in / register online with your NHS number and other details and you can register yourself, or on behalf of someone else. 

When is my last chance to register for support to help me over the next few weeks?

Final registrations for food support will close on the 17 July, to allow for support to reach individuals ahead of the scheme end date of 31 July.

Will the Shielded Patients List still be maintained after the end of July?

The NHS will continue to maintain the Shielded Patient List allowing us to maintain targeted advice and support to those who are clinically extremely vulnerable and to change advice and support if incidence was to rise significantly.

I don’t think I should be considered as extremely vulnerable, but I have received a letter saying I am. What should I do? / I have received a letter saying I am considered as extremely vulnerable but I do not want to follow the guidance.

The criteria for cancer patients were carefully defined, based on those with greatest clinical risk. Some cancer patients may receive a letter because they have other conditions that place them in the highest risk cohort.

We understand that the restrictions imposed by ‘shielding’ are difficult, both for you and for your family members and / or carers. 

However, this is guidance and whether you follow the guidance or not is a personal decision for you to make. You may decide, having weighed up the risks and the implications of ‘shielding’, that you do not want to follow the guidance. Before deciding, we would ask you to discuss the matter with your GP or hospital specialist and those that may provide care for you. This may be particularly relevant for patients who are receiving end of life care. Please do talk to somebody before you decide what to do.

If you are unsure of your risk and what measures you should be taking, you should speak with your hospital specialist. If this is not possible, you should contact your GP.

Will this categorisation of people be used to determine prioritisation for treatment?

Absolutely not. This is about identifying those people most at risk so they can take measures to protect themselves from developing serious illness from COVID-19. It is also about making sure they can access care and support during this time, including social care and help with practical needs such as getting medicines.

If you fall ill from COVID-19, or any other condition, and require treatment in hospital, you will still be treated as normal and will not be denied any medical intervention because you are in the ‘shielding’ group.

I have WM and have someone else living with me: what should I do?

Whilst the rest of your household are not required to adopt these protective shielding measures for themselves, we would expect them to do what they can to support you in shielding and to stringently follow the staying alert and safe (social distancing) guidelines.

  • Minimise as much as possible the time other family members spend in shared spaces such as kitchens, bathrooms and sitting areas, and keep shared spaces well ventilated.
  • Aim to keep 2 metres (3 steps) away from people you live with and encourage them to sleep in a different bed where possible. If you can, you should use a separate bathroom from the rest of the household. Make sure you use separate towels from the other people in your house, both for drying themselves after bathing or showering and for hand-hygiene purposes.
  • If you do share a toilet and bathroom with others, it is important that they are cleaned after use every time (for example, wiping surfaces you have come into contact with). Another tip is to consider drawing up a rota for bathing, with you using the facilities first.
  • If you share a kitchen with others, avoid using it while they are present. If you can, you should take your meals back to your room to eat. If you have one, use a dishwasher to clean and dry the family’s used crockery and cutlery. If this is not possible, wash them using your usual washing up liquid and warm water and dry them thoroughly. If you are using your own utensils, remember to use a separate tea towel for drying these.
  • We understand that it will be difficult for some people to separate themselves from others at home. You should do your very best to follow this guidance and everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces.

If the rest of your household stringently follow advice on social distancing and minimise the risk of spreading the virus within the home by following the advice above, there is no need for them to also shield alongside you.

I have WM but have never been treated: what is the significance?

WM is an indolent (slow or chronic) lymphoma with distinct features and treatment options.

Just having the disease may increase the risk of lowering immunity, because people with WM often produce fewer antibodies than normal. This may not be significant under normal circumstances but in this time of COVID-19, we are assuming that everyone in the so-called ‘Watch and Wait’ category is potentially at risk.

This is why people at any stage of their disease are included in the extremely vulnerable category.

I have WM and have been treated previously: what is my risk?

Many treatments used in WM do lower the immune system but it is not known how long this effect persists or how they may affect the body's response to COVID-19.

  • This is because testing of the immune system in routine practice is not feasible and not required in most cases
  • During chemotherapy treatment, the white blood count (the neutrophils) are closely monitored; this usually recovers well once chemotherapy is finished and is no longer a significant factor
  • Newer agents / targeted therapies like ibrutinib may affect the immune system in a different way to chemotherapy (for example bendamustine or DRC) and monoclonal antibodies such as rituximab. How ibrutinib and similar treatments affect the body’s response to COVID-19 is not yet known.

Doctors make certain assumptions based on how patients in this group are affected by other more familiar viral infections.

  • Illnesses such as influenza (for which vulnerable persons are offered the annual flu vaccine).
  • Herpes viruses that cause illnesses such as chicken pox and shingles (varicella zoster) or cold sores (herpes simplex) for which tablets like acyclovir and valaciclovir can be used for prevention and treatment.
  • Under normal circumstances, a pragmatic approach is made regarding the use of preventative measures such as anti-viral meds (acyclovir). Patients are thought to be at highest risk in the first three months after completion of therapy. This risk diminishes in the following six to twelve months.
  • Note that acyclovir does not have activity against COVID-19.
  • None of this is an exact science and varies from person to person, so in the current crisis, until we know more, people at any stage of their disease are included in the extremely vulnerable category.

I have WM and am receiving treatment now: what is the significance?

Please do not stop any treatment for your WM without discussing this with your doctor, or a member of their team.

People at any stage of their disease are included in the extremely vulnerable category.

Different combinations (such as bendamustine, DRC and fludarabine) and different strengths of treatments (such as chemotherapy given for a stem cell transplant) suppress the immune system to varying extents and for different durations.

Those on active treatment are likely to see a change in their treatment plan so as to minimise their immune suppression as swiftly as possible, preferably without adversely affecting the outcome that is intended from using the chemotherapy in the first place.

I am on chemotherapy. If I experience sweats / cough / shivering should I call NHS 111 or the chemotherapy care line?

You should call the chemotherapy care line. If the chemotherapy care line is not available in your area, please speak to your clinical team about who you should call in this situation.

I was told I need to start treatment for the first time: what now?

The point at which treatment is commenced will be delayed if possible; watchful waiting is the preferred strategy whenever possible.

  • Treatment will be given in symptomatic patients, but if the symptoms are mild and / or tolerable, treatment is likely to be deferred, alongside close monitoring.
  • For patients presenting with anaemia (low haemoglobin) as a main problem (resulting in symptomatic fatigue), intravenous iron infusions could be considered. This requires one or two day case visits to the hospital but if this results in a rise in the haemoglobin, the need for chemotherapy could be deferred for a number of months until the lockdown is lifted.
  • Some patients may be considered for erythropoietin, also known as EPO (a weekly injection to stimulate red cell production in the bone marrow) as a way to counteract anaemia.
  • If your plasma viscosity is a main concern, plasma exchange may be commenced to remove excessive IgM from the blood and ‘thin’ the blood as a holding measure until chemotherapy starts. This would entail a visit every two to four weeks to a centre that can carry out the procedure. Plasma exchange does not itself suppress the immune system.

Read more about WM symptoms here

What changes to my treatment might occur?

  • Less immunosuppressive chemotherapy treatments (for example cyclophosphamide instead of bendamustine) may be chosen or the number of intended cycles may be reduced to limit visits to the hospital.
  • Oral chemotherapy options may be given instead of intravenous options to facilitate self-isolation.
  • Rituximab maintenance will be stopped to limit the burden of travelling to healthcare centres and the risk of immunosuppression.
  • It is not known whether these changes would affect the eventual outcome of treating the disease. However, there is widespread agreement that it is crucial to keep vulnerable people isolated as far as possible at this stage, Once regulations about this change, treatment choices will be revisited by the treating team.

Will there be problems accessing my cancer drugs?

There are currently no medicine shortages as a result of COVID-19. The country is well prepared to deal with any impacts of the coronavirus and we have stockpiles of generic drugs like paracetamol in the event of any supply issues.

The Department of Health and Social Care is working closely with industry, the NHS and others in the supply chain to ensure patients can access the medicines they need and precautions are in place to prevent future shortages.

There is no need for patients to change the way they order prescriptions or take their medicines. Patients should always follow the advice of doctors, pharmacists or other prescribers who prescribe and dispense their medicines and medical products. The NHS has tried-and-tested ways of making sure patients receive their medicines and medical products, even under difficult circumstances. If patients order extra prescriptions, or stockpile, it will put pressure on stocks, meaning that some patients may not get the medicines or medical products they need.

I have already started treatment: will anything change?

In the absence of evidence to guide us, treatment decisions should be based on your general health, any other illnesses, the response already achieved so far, and balancing this against the risk of developing COVID-19 infection.

  • It is thought that persons on BTK inhibitors (ibrutinib, acalabrutinib and zanubrutinib) should be continued on treatment. Stopping treatment has a high risk of causing IgM flare, increasing risk of symptoms such as fever (which can be confused as COVID-19 related) and high blood viscosity, which may trigger the need for plasma exchange.
  • For patients who have already achieved a good response to rituximab-chemotherapy, a reduced number of cycles may be considered. Alternatively, a switch to less immunosuppressive treatment may be considered.
  • Maintenance rituximab will be discontinued because of the increased risk of immunosuppression, and of the requirement for travel to the hospital.
  • Ultimately, in order to err on the side of safety, we need to balance risks versus benefits.

I had treatment before and now I am relapsing: what will happen?

When possible, commencement of treatment will be delayed if mild, tolerable symptoms are present with continuation of close monitoring.

  • For patients presenting with anaemia (low haemoglobin) as a main problem (resulting in fatigue or shortness of breath), alternative ways of boosting haemoglobin such as erythropoietin injections (can be taken at home) or intravenous or oral iron may be used as a holding measure. Intravenous iron given once or twice would need a visit to a hospital but if this results in a rise in the haemoglobin, further visits for chemotherapy could be put off altogether for a number of months.
  • Stem cell transplants are not taking place at present. If you were planned for one, an alternative holding measure may be considered.

Is testing to establish if I have COVID-19 (serological testing) likely to be affected by clonal IgM in patients with WM?

Blood tests for COVID-19 are being developed to identify COVID-19 specific IgM antibodies to look for evidence of infection and will not be affected by the total IgM or paraprotein levels.

Such IgM antibodies are the ‘first responders’ to any infection that we encounter - they are produced as part of the early immune response and so can help to confirm whether we have been infected. This IgM is different to the IgM produced by WM cells, and can still be picked up by the test despite the presence of WM-related IgM. While such testing is already in widespread use to detect a range of infections, a specific test for COVID-19 has needed to be developed in the past weeks.

One concern about this test in WM patients is that previous treatments such as rituximab (which targets B cells whose job it is to produce antibodies) might result in not being able to mount an immune response to COVID-19, and there is a possibility of a negative serological test even if they were exposed to the virus (having the virus but with a negative test result).

I am enrolled in a clinical trial: what now?

The National Institute for Health Research (NIHR) has issued guidance on clinical trials, recognising the need to prioritise research on COVID-19 itself, and that many clinical research teams will be asked to redeploy to help with providing patient care.

The clinical team will seek advice from the sponsors who are running the trial about adapting the care of patients who are on clinical trials.

People already having cancer treatment as part of clinical trials may be able to continue their treatment if it is safe to do so, but hospitals are trying to reduce the number of times patients attend for tests, so the arrangements for people on trials may be changed for safety reasons such as:

  • supply of medication for longer durations to reduce patients having to come into the hospital
  • postponement of visits to the hospital for trial-related tests such as bone marrow biopsies and scans
  • visits that are necessary on safety grounds, in order to continue receiving the trial medication (for example blood tests or ECGs - heart tracings to ensure it is safe to continue) may need to go ahead as planned but the possibility of more local provision may be possible.

Some trials have stopped recruiting new patients. You should contact your clinical team with questions about your individual treatment including any trials you are part of.

What about supportive treatments?

Several supportive measures are being implemented to minimise risk and reduce the chance of hospital admission.

  • Growth factor (G-CSF) injections are likely to be used in patients who are receiving chemotherapy to reduce the risk of neutropenia (low white cell count). The clinical team will decide how long and how often these injections may be needed. They are given subcutaneously (under the skin) and this can be done at home.
  • Some patients may receive preventative antibiotics if they are already experiencing recurrent infections.
  • Where indicated, routine vaccination against influenza and pneumococcus should be continued despite reports of impaired responses.

Immunoglobulin infusions (IVIG)

Some people are already receiving antibody replacement because they experience repeated infections. This is usually given once a month as a day case in the hospital. Should this continue?

  • Guidelines were issued by the NHS on 27 March 2020. A decision will be made on a case-by-case basis considering the balance of risk and benefit. Continuing to provide IVIG as a day case is preferred as it seems contrary to remove a protective measure at a time of pandemic.
  • The risks from travelling to a hospital however may be too high in some cases. Where this is not appropriate, the clinical team will consider how attendance can be minimised.
  • Dependent on patient circumstances and hospital capacity, short-term antibiotics may be given instead (to replace immunoglobulin therapy).
  • The dose of immunoglobulin may be changed to allow the increasing interval between attendances.
  • For suitable patients the use of subcutaneous immunoglobulin may be used instead. This will depend on the capacity of the centre to deliver a training package to patients to self-administer the treatment and receive deliveries at home.

How can I minimise my visits to the hospital?

All hospitals in the UK are working on and have implemented contingency measures so as to minimise the need for all patients, especially the extremely vulnerable, to leave their home. These include:

  • home delivery of oral medication where possible (exact arrangements vary between regions due to geographical and infrastructure differences)
  • changing intravenous to oral treatments if possible
  • dispensing longer periods of oral medications
  • reducing the number of cycles to be given, especially if there is already evidence for a good response
  • considering treatment breaks or pauses while the risk of COVID-19 is particularly high
  • using growth factor injections to reduce the chance of low blood counts and reduce admission rates
  • deferring supportive therapies (such as for bone-strengthening treatments like Zometa)
  • these measures are unprecedented and are being brought in specifically for this pandemic. It is not known if these changes might alter the eventual treatment outcome, but it makes sense to take these important safety steps now. Once the pandemic is under control, clinical teams will review the treatment strategy once more.

I have symptoms that I am worried about - what should I do?

It is important that you seek clinical advice if you have any worrying symptoms. GP surgeries have been advised to offer online consultations and remote triage so that people do not have to attend in person unnecessarily. Please do contact your GP surgery directly if you are worried about a possible symptom - this could be anything that you would have normally consulted your GP about, such as a new lump, chest pain, symptoms suggestive of a stroke.

How can I safely access NHS services outside of my home?

The NHS has already significantly changed the way it operates in order to safely treat and care for those who are at highest risk of severe illness were they to contract COVID-19.

If your GP / hospital specialist asks you to attend an appointment at the GP surgery / clinical / hospital, you can contact them to ask them about the specific infection control arrangements in place locally and to discuss any concerns you might have.

NHS England wrote to your GP or hospital clinician, asking them to review ongoing care arrangements for all patients who were shielding. As a result of this review, many of you will have received regular care or treatment at home, or had hospital appointments cancelled or postponed, if clinically appropriate to do so. These care arrangements may change when the shielding advice is further relaxed from 1 August.

Wherever care at home is not possible, the NHS has been asked to provide safe care in infection-controlled settings, in line with latest infection prevention and control guidance.

NHS Volunteers can also help with transport to a medical appointment, please ask your healthcare professional to organise this.

Can carers visit to provide medical support?

Yes, any essential carers or visitors who support you with your everyday needs can continue to visit unless they have any of the symptoms of coronavirus.

Essential carers coming to your home should follow advice on good hygiene: wash their hands with soap and water for at least 20 seconds on arrival to your house and often while they are there (or use hand sanitiser), avoid touching their face, catch any coughs or sneezes in a tissue (or their sleeve), and put used tissues immediately in the bin and wash their hands afterwards. They should observe social distancing guidelines where close or personal contact is not required and where this is possible.

Further information and guidance on home care can be found at: www.gov.uk/government/publications/coronavirus-covid-19-providing-home-care

I have just been referred by my GP with suspected cancer. Should I attend my diagnostic appointment?

It is important for new symptoms that could be due to a new cancer diagnosis are assessed promptly. Please discuss with the clinical team at the hospital. In the event of any disruption, hospitals will always make decisions to prioritise tests for those most in need.

I am worried that I have COVID-19: what should I do?

If you think you might have been exposed to the virus, or develop symptoms, you should follow the same instructions as those for the general public. Do this as soon as you get symptoms.

  • Use the NHS 111 online coronavirus service to find out what to do. Only call NHS 111 if you cannot get help online.
  • Make sure you tell the person you speak to about your WM and treatment.
  • If you are receiving chemotherapy treatment, phone your hospital chemotherapy helpline so they are aware.
  • In an emergency, call 999 if you are seriously ill.
  • To protect others, do not go to places like a GP surgery, pharmacy or hospital. Please stay at home.

What are the symptoms likely to be? / Will the symptoms be different because I have cancer? / What should I look out for? / What should I do?

The NHS outlines the common symptoms of coronavirus on its website.

If you are experiencing symptoms of any infection or illness, including coronavirus, you should contact your cancer team as you would normally. You can do this as well as calling NHS 111 for advice about coronavirus symptoms.

Can you catch this virus more than once?

It is not yet known whether reinfection is possible, although many experts think it is unlikely.

What should I do if my clinician is diagnosed with coronavirus?

If your clinician is diagnosed with coronavirus and you have not seen them within two weeks, then you are unlikely to have been exposed to coronavirus. Clinicians who care for a shielding patient should wear a mask during the consultation to protect you during the consultation along with gloves and a plastic apron if they make contact with you.

Health professionals are working to contact anyone who has been in close contact with people who have coronavirus. If you are concerned about the impact this will have on your treatment, contact your hospital for advice.

What else do I need to know?

We currently are in an unusual time where there is little evidence on which to base decisions at a time where things are changing fast.

  • Each day, observations around the world being made during this pandemic will be of immense help in the future.
  • Clinical trials to treat COVID-19 are well underway.
  • There is an unprecedented amount of collaboration going on between doctors and scientists across the globe to share information to make it safer to care for patients in this difficult time. The picture is changing on a daily basis.
  • All NHS Hospitals are working hard to put new practices in place in response to guidance that is coming from the Department of Health and Public Health England.
  • WM patients and advocates play an important role in the dissemination of information.
  • WMUK is on a mission to regularly update the WM community with fact-checked information.
  • We would recommend speaking to your specialist team if you have any questions or worries about coronavirus and WM.
  • Please do not come to the hospital unless it is absolutely essential.
  • Please do not travel unless it is essential.

Food and support with other essentials

For some people shielding, adapting to a more normal way of life will take some time, which is why the shielding advice will be relaxed in two stages: first from 6 July, and then again from 1 August.

From 1 August people will no longer be advised to shield and the Government’s core support offer will end.

The core offer, which will continue to be available to the end of July, covers the following three areas of assistance:

  • Essential supplies – a free, standardised weekly parcel of food and household essentials;
  • Medicines – arrangements to have medicines delivered to people’s homes by local community pharmacies or their dispensing doctor;
  • Social contact and basic needs – for example, emotional or social support such as people to talk to on the phone or via a computer.

When is my last chance to register for support to help me over the next few weeks?

Final registrations for food support will close on the 17 July, to allow for support to reach individuals ahead of the scheme end date of 31 July.

When will my food delivery stop?

Those in receipt of centrally provided food boxes, who continue to need help, will receive this support while they are advised to shield, until the end of July.

Final registrations for food support will close on the 17 July, to allow for support to reach individuals ahead of this end date of 31 July.

Can I still get access to priority delivery slots?

Priority supermarket delivery slots will continue beyond July for those clinically extremely vulnerable who have already signed up for support.

Final registrations for food support will close on the 17 July.

Where can individuals go for help once the shielding support offer finishes?

There are alternative food delivery options available.

Priority supermarket delivery slots will continue beyond July for those clinically extremely vulnerable who have already signed up for support.

Supermarkets and other retailers also offer telephone ordering and food boxes to make it easier for vulnerable people to shop for themselves.

The NHS Volunteer Responders Programme will continue providing support with food, prescriptions and essential items to those who are self-isolating for any reason. This also includes anyone that is clinically extremely vulnerable, or anyone that is vulnerable for another reason.

If you or a family member meet the criteria, you can call 0808 196 3646 and ask for help. More information is available here: https://volunteering.royalvoluntaryservice.org.uk/nhs-volunteer-respondersportal/isolating

Government is committed to supporting councils and voluntary sector organisations to respond to those who have specific support needs and requirements during the COVID-19 pandemic. Details of the support and advice available can be found here: https://www.gov.uk/find-coronavirus-support

If you need urgent help and have no other means of support, contact your local authority to find out what support services are available in your area. You can use this search tool: https://www.gov.uk/coronavirus-local-help

Will the Shielded Patients List still be maintained after the end of July?

The NHS will continue to maintain the Shielded Patient List allowing us to maintain targeted advice and support to those who are clinically extremely vulnerable and to change advice and support if incidence was to rise significantly.

Income and Employment Support

Can I go back to work?

  • Before 1 August: If you have been able to work at home, you should continue to do so. At this time, the Government does not advise CEV individuals to attend their place of work (workplace/’onsite’) if this requires them to leave their home. This guidance remains advisory.
  • After 1 August: From 1 August the Government will further relax advice to those shielding, bringing it in line with the advice to those who are clinically vulnerable. In broad terms, this means that although the advice is still to stay at home as much as possible, those shielding may wish to go out to more places and see more people, as long as they take particular care to minimise contact with others outside their household and follow hygiene measures. This means that if they are unable to work from home but can work on site, they should do so, provided the business is COVIDsafe.

What about workers who live with someone who is clinically extremely vulnerable and previously advised to shield. Can they go back to work now?

People living with those who are clinically extremely vulnerable should continue to take extra care to follow the social distancing rules, including at work to the extent possible.

The Government position is that they should also work from home if they possibly can.

What if I can’t work from home and my workplace can’t offer social distancing?

All employers have been asked to work with the government to ease the transition back to a more normal way of life for their clinically extremely vulnerable employees.

It is important that this group continue to take careful precautions, and employers should do all they can to enable them to work from home where this is possible, including moving them to another role if required. Employers and employees should start having these conversations as early as possible before the guidance is changed on 1 August.

Where this is not possible, those who have been shielding should be provided with the safest onsite roles that enable them to maintain social distancing from others. If employers cannot provide a safe working environment, they will still be able to access a range of government support: this includes the Coronavirus Job Retention Scheme for employees who have previously been furloughed for a full three-week period prior to 30 June and the Self-Employed Income Support Scheme.

I don’t feel safe enough to go back to work, could I face disciplinary action? What are my rights?

You should look to come to an agreement with your employer and understand their specific policies around health and safety and workplace attendance, especially in relation to COVID-19.

If you have concerns about your health and safety at work, you can raise them with any union safety representatives, or ultimately with the organisation responsibility for enforcement in your workplace, either the Health and Safety Executive or your local authority.

You can get advice on your specific situation and employment rights by visiting the Acas website https://www.acas.org.uk/contact or calling the Acas helpline, 0300 123 1100.

I’m furloughed – what does this mean for me?

From 1 August the Government will further relax advice to those shielding, bringing it in line with the advice to the clinically vulnerable. This means that if these individuals are unable to work from home but can work on site, they should do so, provided the business is COVID-safe. This includes employees who were previously, but no longer, furloughed.

Employers have been asked to work with the government to ease the transition back to a more normal way of life for their clinically extremely vulnerable employees. It is important that this group continue to take careful precautions, and employers should do all they can to enable them to work from home where this is possible, including moving them to another role if required.

Where this is not possible, those who have been shielding should be provided with the safest onsite roles that enable them to maintain social distancing from others. If employers cannot provide a safe working environment, they can continue to use the Coronavirus Job Retention Scheme for employees who have previously been furloughed for a full three-week period prior to 30 June.

People cannot be newly furloughed after 10 June, but what if we are advised to shield again after this point?

The Government is aware of a small number of people who will have been newly advised to shield after 10 June and is looking at the right way of ensuring they are supported whilst shielding guidance applies to them.

Employees who are unable to work because they are shielding in line with public health guidance (or need to stay home with someone who is shielding) can be furloughed. However, such an employee can only continue to be furloughed from 1 July if they have previously been furloughed for at least 3 consecutive weeks taking place any time between 1 March 2020 and 30 June.

Those who are clinically extremely vulnerable are able to access additional support where eligible, including Statutory Sick Pay and the Self Employed Income Support package.

What if I am told to shield again in the future, will I lose my job? Will the Government support me to protect my job/income?

Where possible, your employer should help you to work from home.

If home working is not possible, employers will be able to access the Coronavirus Job Retention Scheme for clinically extremely vulnerable employees who have previously been furloughed for a full three-week period prior to 30 June.

For those who have not been furloughed, clinically extremely vulnerable employees who are notified (by the NHS, their GP or Government letter) to shield again will again be entitled to Statutory Sick Pay for the period they are advised to shield themselves, if all other SSP eligibility rules are met.

The existing employment rights framework provides protections against discrimination, unfair dismissal and detriment. These protections ensure fair treatment of those who public health guidance recommends to take additional steps to reduce the risk of becoming ill with COVID-19.

You can get advice on your specific situation and your employment rights by visiting the Acas website https://www.acas.org.uk/contact or calling the Acas helpline, 0300 123 1100.

Guidance around shielding will be continually reviewed and informed by the latest scientific evidence and advice. Support measures will remain under review by the government and will consider what changes may need to be made as the advice to the clinically extremely vulnerable evolves.

What protection from redundancy do I have? Are there existing protections because of medical conditions? If I’ve been made redundant, what rights do I have?

Redundancy is a form of dismissal from your job. It happens when employers need to reduce their workforce. https://www.gov.uk/redundancy-your-rights

If you’re being made redundant, you might be eligible for certain things, including:

  • redundancy pay
  • a notice period
  • a consultation with your employer
  • the option to move into a different job
  • time off to find a new job

You must be selected for redundancy in a fair way, for example because of your level of experience or capability to do the job.

Employees have protections against unfair dismissal. https://www.gov.uk/dismissstaff/unfair-dismissals.

It is breaking the law to discriminate, directly or indirectly, against anyone because of a protected characteristic such as age, sex or disability.

Employers also have particular responsibilities towards disabled workers and those who are new or expectant mothers.

If you are disabled, your employer should make adjustments as reasonable to avoid you being put at a disadvantage.

If you are a new or expectant mother, your employer should assess the health and safety risks for you.

What if I live in Scotland or Wales, but work in England and my employer expects me to return to work?

Public health is a devolved matter. The safer workplaces guidance is limited to England only and advises employers who operate in the other nations of the UK to consider the guidance and legislation produced by Scottish Government, Welsh Government and Northern Ireland Executive.

The advice for employers in England is that they should do all they can to enable you to work from home where this is possible. Where this is not possible, those who have been shielding should be provided with the safest onsite roles that enable them to maintain social distancing.

You should therefore look to come to an agreement with your employer and understand their specific policies around health and safety and workplace attendance, especially in relation to COVID-19.

If you have concerns about your health and safety and returning to work, you can raise them with any union safety representatives, or ultimately with the organisation responsibility for enforcement in your workplace, either the Health and Safety Executive or your local authority.

You can get advice on your employment rights by visiting the Acas website https://www.acas.org.uk/contact or calling the Acas helpline, 0300 123 1100.

Can I still get statutory sick pay following the initial relaxation of shielding guidance (between 6 and 31 July)?

You will be eligible for Statutory Sick Pay (SSP) on the basis of your shielding status until 31 July. SSP eligibility criteria apply.

Will I still be able to get Statutory Sick Pay from 1 August, with the shielding guidance for being brought in line with that for the Clinically Vulnerable?

From 1 August, the government will no longer advise people to shield because they are clinically extremely vulnerable. This means that from 1 August individuals who are currently shielding will be able to return to work. Therefore, you will no longer be eligible for SSP on the basis of being clinically extremely vulnerable.

Employers to help their employees to transition back to work safely and support them to follow strict social distancing in the workplace where they cannot work from home.

Employees will remain eligible for SSP if they are required to self-isolate because they, or someone in their household, has symptoms of COVID-19, and are unable to work as a result. SSP is available to those who are self-isolating because they have been notified by the NHS or public health authorities that they have come into contact with someone who has coronavirus, and are unable to work as a result. SSP also remains available to those who are off sick for reasons other than coronavirus.

SSP eligibility conditions apply.

People who are not entitled to Statutory Sick Pay may be entitled to Universal Credit, New Style Job Seekers Allowance or New Style Employment and Support Allowance.

Welfare Support

Will I be able to get Employment and Support Allowance until the end of July?

People awarded ESA because they have been shielding may continue to be eligible because they either:

  • have a health condition or disability that affects their ability to work or
  • they are infected with COVID-19 or are required to self-isolate in accordance with government guidelines

What will happen to a person’s Employment and Support Allowance claim if they are claiming ESA as a shielded person and the guidelines have now changed?

The Department for Work & Pensions (DWP) will review cases to ensure the information held is updated in accordance with changes to the shielding guidance.

Where the entitlement conditions for ESA are met, the DWP will progress the claim accordingly. This will include a referral for a Work Capability Assessment in most cases.

Where a person no longer meets the entitlement conditions for ESA, the claim will end and the person will be advised about other support available, including Universal Credit.

Will those who are clinically extremely vulnerable claiming Universal Credit be expected to attend the job centre for a Face to Face appointment?

When conditionality is reinstated, the majority of contact with claimants will be over the phone or via the Universal Credit online journal. Any work-related requirements that are agreed will be in line with social distancing guidelines.

Will Universal Credit conditionality requirements be tailored for those who are clinically extremely vulnerable?

DWP Work Coaches have the discretion to tailor conditionality requirements, in light of the impact of the claimant’s health condition to ensure they are realistic and achievable. All requirements are agreed in discussion with claimants. Claimants with the most severe health conditions are already exempt from any form of conditionality, including face to face appointments.

Where it is reasonable for a claimant to engage in work focused interviews, there can be conducted over the phone. Any work-related activities that are agreed will be consistent with current government advice / guidance.

Could I be sanctioned if I left my job because I didn’t feel safe going back?

Each case is considered on its own merits and claimants will not be sanctioned unless they leave their job voluntarily without good reason.

A Decision Maker will take into account all the claimant’s individual circumstances including any health conditions or caring responsibilities, any evidence of good reason they have provided and current public health advice, before deciding whether a sanction is warranted.

What employment support can I get if I am still working?

You can get Access to Work (ATW) which is a demand-led, discretionary grant that contributes to the disability related extra costs of working faced by disabled people that are beyond standard reasonable adjustment.

ATW provides tailored support which can include:

  • workplace assessments 
  • travel to/in work 
  • support workers
  • specialist aids and equipment
  • mental health support for people who are absent from work or experiencing difficulties with their wellbeing
  • disability awareness training for work colleagues
  • communication support at interview 
  • the cost of moving equipment following a change in location or job

What help is available if I am unemployed or have recently been made redundant?

For those that require more intensive employment support they still have access to both the Work and Health Programme and Intensive Personalised Employment Support. Providers are making use of digital channels to provide one to one support including regular health and wellbeing conversations with our most vulnerable claimants.

 

Employers

Should employers be encouraging clinically extremely vulnerable and clinically vulnerable employees to come to work?

Employers should support employees identified either as clinically vulnerable or clinically extremely vulnerable, to work from home in the first instance. This may involve moving them into another role or providing them with remote working equipment to facilitate this.

Where a clinically vulnerable or clinically extremely vulnerable employee cannot work from home, they should be offered the safest on-site roles that enable them to maintain social distancing from others, once the advice to shield is lifted post 1 August.

If clinically vulnerable or clinically extremely vulnerable employees are required to spend time within close contact of others, employers should carefully assess whether it involves an acceptable level of risk, whether the activity is essential for the work required, and what actions they can take to mitigate risks. This may involve using barriers or screens, limiting the time of certain activities, using back to back or side by side working, and introducing frequent handwashing procedures.

If employers cannot provide a safe working environment for clinically vulnerable or clinically extremely vulnerable employees, and no other options are suitable, they may consider continuing to use the Job Retention Scheme for those employees who have previously been furloughed for a full three-week period prior to 30 June.

What should employers do if they cannot make reasonable adjustments for clinically extremely vulnerable employees, and they cannot work from home?

Employers have a legal duty to provide reasonable adjustments for employees with disabilities. Employers also have a legal duty to make sure the workplace is safe for their employees; this includes employees with disabilities and those who are clinically vulnerable or clinically extremely vulnerable.

The safer workplaces guidance provides some suggestions to help employers make their workplaces COVID-safe for their employees, visitors and customers.

If employers cannot provide a safe working environment for clinically vulnerable or clinically extremely vulnerable employees or those with disabilities, and no other options are suitable, they may consider continuing to use the Coronavirus Job Retention Scheme for those employees who have previously been furloughed for a full three-week period prior to 30 June.

Can staff refuse to come into work if they don’t think it’s safe? Could they face disciplinary action for refusing to come into work / refusing to work in the new conditions?

Employers should consult with unions and employees when carrying out their risk assessment to make sure their concerns can be taken into account. If you continue to have concerns, you can raise them with any union safety representatives, or ultimately with the organisation responsible for enforcement in your workplace, either the Health and Safety Executive or your local authority.

Where the HSE identifies employers who are not taking action to comply with the relevant legislation and guidance to control public health risks, they will consider taking a range of enforcement actions.

Some workers, whether through specific vulnerability, family caring responsibilities or an abundance of caution may be reluctant to re-enter a workplace even though the employer feels it is safe to do so. Employers are encouraged to engage constructively with such workers and their representatives and try to find solutions that are agreeable to all.

Education

Can my child now go back to school? Will my child be able to go back to school from September if they are no longer required to shield?

At this time, the government is not advising shielding children to return to school/nursery.

In due course, the government will be publishing guidance on the wider re-opening of education in September.

I am a shielding parent, does this mean my child can go back to school/nursery?

The advice to parents who are shielding remains that others in their household do not need to shield alongside them, so your child can go back to their school, college or nursery if they are eligible to do so, in line with their peers.

What if I don’t / my child doesn’t feel safe going back to school, do they have to go back?

The Government is gradually increasing the numbers of children and young people attending schools and colleges. The decision is based on the latest scientific advice.

There is guidance for education and childcare settings to welcome back children and young people, focusing on measures that settings can put in place to help limit the risk of the virus spreading.

Parents should notify their nursery / school / college as normal if their child is unable to attend so that staff can explore the reason with them and address barriers together. Parents will not be fined for non-attendance at this time.

Mental health and well-being support

It is normal during these uncertain and unusual times to feel anxious or feel low. Follow the advice that works for you in the guidance on how to look after your mental health and wellbeing during coronavirus (COVID-19).

The Every Mind Matters page on anxiety and NHS mental wellbeing audio guides provide further information on how to manage anxiety.

If you feel you need to talk to someone about your mental health or you are looking for more support for someone else, we would urge you to speak to a GP and seek out mental health support delivered by charities or the NHS.

Where can I find out more information?

We will be monitoring the latest government and NHS health updates from across the UK and updating our News posts regularly as new guidance emerges. But for the most up to date information, please visit Government, Public Health England (PHE) and NHS websites.

The NHS Volunteer Responders Programme will continue providing support with food, prescriptions and essential items to those who are self-isolating for any reason. This also includes anyone that is clinically extremely vulnerable, or anyone that is vulnerable for another reason.

If you or a family member meet the criteria, you can call 0808 196 3646 and ask for help. More information is available here: https://volunteering.royalvoluntaryservice.org.uk/nhs-volunteer-respond…

Government is committed to supporting councils and voluntary sector organisations to respond to those who have specific support needs and requirements during the COVID-19 pandemic. Details of the support and advice available can be found here: https://www.gov.uk/find-coronavirus-support

If you need urgent help and have no other means of support, contact your local authority to find out what support services are available in your area. You can use this search tool: https://www.gov.uk/coronavirus-local-help

You can find a full list of links to relevant websites in the Related links section below: