COVID-19 FAQs

General

Do myeloma patients have an increased risk of COVID-19 infection?

Myeloma patients, even those in remission, are considered extremely vulnerable to COVID-19. This is because myeloma affects how well the immune system can respond to infection. The risk of infection is further increased in patients who have active (symptomatic) myeloma and are undergoing myeloma treatment.

Do patients with AL amyloidosis have an increased risk of infection?

Patients with AL amyloidosis are at an increased risk of infection compared with the general population. The risk is further increased for those on treatment.

Do patients with smouldering myeloma have an increased risk of infection?

Patients with smouldering myeloma have an increased risk of infection, however, the risk is not as great as those with active myeloma or those on treatment for their myeloma.

Do MGUS patients have an increased risk of infection?

Patient with MGUS (monoclonal gammopathy of undetermined significance) only have a very small increased risk of infection compared with the general population.

What is the best way to protect myself from infection?

The best way to protect yourself from COVID-19 is by minimising contact with people outside your household, ‘extended household’ or ‘support bubble’ and by following good personal and household hygiene.

Where possible you should:

  • Stay two metres away from people not in your household, ‘extended household or ‘support bubble’
  • Regularly wash your hands
  • Ask others to cover their mouth and nose with a tissue or sleeve when they cough or sneeze
  • Avoid touching your face
  • Regularly clean surfaces
  • Wear a face mask in indoor public spaces
  • Avoid busy places, if you can
  • Limit the number of people you meet

Should I be shielding?

It is currently advised that all clinically extremely vulnerable people in England, Scotland, Wales and Northern Ireland follow the national COVID-19 guidelines. This means you are not advised to shield but to follow the general social distancing advice, as well as any extra guidance for clinically extremely vulnerable people.

You can read the latest advice in England, Scotland, Wales and Northern Ireland in our What measures should I be following? post.

What can I do to protect myself from COVID-19 when meeting people?

There are some simple things you can do to reduce the risk of COVID-19 when meeting people outside your household.

  • Meet outside if you can
  • If you do meet inside, make sure the space is well ventilated
  • Meet somewhere quiet or during quieter times
  • Ask the people you are meeting to get tested, even if they don’t have symptoms, before you meet up. They can order free home tests that give results in 30 minutes.

Should I visit my consultant if I think I have contracted coronavirus?

If you suspect you have coronavirus or have a high temperature, cough and/or loss of smell or taste you should not go to your appointment or visit your GP. You should contact your healthcare team or NHS 111 (by phone or online) in the first instance for advice on what to do next.

Patients in Scotland are advised to call their GP or, if their call is out of hours, contact NHS 24 on 111. Patients in Wales are asked to call 111 (if available in their area) or call 0845 46 47. Patients in Northern Ireland are asked to call 0300 200 7885.

If you contact NHS 111 you should still contact your healthcare team as soon as possible to make them aware of your situation.

What should I do if I test positive for COVID-19?

If you test positive for COVID-19 you will be given instructions by the NHS on the things you need to do to help prevent the spread of COVID-19. This will include continuing to self-isolate, informing anyone you have interacted with, and providing details of places you have visited.

You can read the full details of the contact tracing processes for EnglandScotlandWales and Northern Ireland on their government websites.

We would also recommend that you tell the healthcare teams treating your myeloma, myeloma symptoms or any other underlying condition. This will help them give you the right support and make any adjustments to your treatment or care.

Vaccines

Please visit our dedicated COVID-19 Vaccines FAQ page.

Treatment

Could my treatment change due to the COVID-19 pandemic?

Your treatment plan is continually reviewed by your healthcare team to ensure you receive the right treatment. Your team will only change your treatment if it is the best course of action in your individual situation.

When making treatment decisions your team consider your preferences and whether the benefit of the treatment outweighs the associated risks. As part of this discussion, they will also consider the risk of COVID-19.

Your healthcare team are best placed to talk with you about your treatment plan. They will discuss any potential changes and the reasons for the changes with you.

What are hospitals and healthcare teams doing to reduce the risk of COVID-19 infection?

To reduce your risk of COVID-19 infection your team will be looking for ways to limit face-to-face contact and reduce your time in hospital. They may:

  • Use telephone or video consultations
  • Change your treatment to one that can be given at home or as an outpatient
  • Change the frequency, timing and location of any blood tests or check-ups
  • Ask you to come to your appointment alone
  • Ask you not to come early to the clinic

Why has my treatment has been moved to a different location?

The NHS is continuously working to ensure that essential cancer care continues during the COVID-19 pandemic. Your treatment plan may be adjusted to enable this. This includes changing the location of treatments, blood tests or appointments to minimise your risk of infection.

Can I take someone with me to my appointment?

We would recommend you check with your healthcare team. Many hospitals are encouraging family members/friends not to attend clinic appointments to limit the number of people in and around the hospital. If possible, family members/friends should wait in the car or outside the hospital away from other people. You should speak to the healthcare team to confirm their arrangements.

If you would usually attend with a patient and are concerned about missing information, the patient can ask to record their appointment on their phone (or other recording devices), take in a list of questions to ask, write notes and/or ask their doctor or nurse to make a note of the key points.

What is the status of clinical trials?

Recruitment to clinical trials is ongoing and new trials are opening. However, trial recruitment status may vary between hospitals due to differences in clinical research capacity. If you are interested in joining a clinical trial, you should ask your healthcare team for details of clinical trials currently recruiting in your area.

You can also check the Myeloma UK Trial Finder for a list of trials registered as recruiting in the UK

Work and School

Do I have to go to work?

The general advice for England, Scotland, Wales and Northern Ireland is to work from home where possible.

In  ScotlandEngland, Wales and Northern Ireland, if you can’t work from home, you can attend work.

Following a workplace risk assessment, your employer should make the necessary adjustments to your workplace to protect you.  

In the UK, by law, your employer must look after your health and safety. As someone with myeloma or a related condition, you’re also protected by disability and discrimination laws, even if you are in remission. 

In England, Scotland and Wales, you’re protected from discrimination by The Equality Act. In Northern Ireland you are protected by the Disability Discrimination Act. 

Your employer must consider “reasonable adjustments” they could make to help you stay safe at work. You may wish to request reasonable adjustments during the COVID-19 pandemic. These may include asking for a workplace risk assessment, and changes such as working from home, changing shift patterns or adjusting duties to reduce contact with people. 

If you are worried about going to work, try speaking to your occupational health service, health and safety representative or human resources team. You can also get advice from your workplace union, Citizen’s Advice, or ACAS.  

If your workplace can’t be made safe, you should talk to your employer about the options available to you. You may want to discuss whether you need a fit note with your GP or consultant. 

Does my family have to go back to work?

If someone you live with is working or has been asked to return to work, we would recommend that they speak to their employer. Their employer may be able to offer additional support to help them follow strict social distancing measures by changing when they work or the tasks they need to do. If the person you live with doesn’t want to return to work they can ask their employers for some time off. Everyone is entitled to time off to look after dependants in an emergency – this includes a partner, parent or other family members.

The time off is unlimited but employers are not obliged to pay you. It will depend on their policy. If an employer won’t pay you for this time, they might agree to let you use holidays.

What can I do if I am worried about my finances? 

For information on managing your finances and benefits available to you, read our “Infosheet on Managing your Finances”.  

If you have any questions about the main benefits and allowances that may be available to you if you are a myeloma patient or a carer of a myeloma patient, you can get in touch with us through the Infoline (0800 980 3332 (UK) or 1800 937 773 (Ireland)) or the Ask the Nurse email service

Do my children have to go to school?

Schools across the UK are open. Children who live with someone who is clinically extremely vulnerable should still attend school

Carers, Friends and Family

I  support someone who has myeloma with daily household tasks how can I help protect them when visiting?

If you are supporting or caring for a clinically extremely vulnerable person you can take some simple steps to protect them.

This includes:

  • Practising good hygiene
  • Wash your hands regularly using soap and water for at least 20 seconds or use hand sanitiser, especially on arrival
  • Cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • Put used tissues in the bin immediately and wash your hands afterwards
  • Minimising direct contact
  • Wear a face covering
  • Not visiting if you are unwell
  • Keep indoor spaces well ventilated
  • Getting tested twice a week, even if you don’t have symptoms. Testing regularly will help to reduce risk, particularly before meeting people from outside your household. You can order free home tests that give results in 30 minutes.

It is vital that if you begin to show symptoms of COVID-19 (fever and/or new continuous cough) you do not go and visit.

I need to go out to work. How can I protect my family member?

There are some simple steps you can take to protect the person you live with.

Whilst working:

  • Practice good hygiene throughout the day, frequently and thoroughly washing your hands
  • Minimise your contact with others, keeping 2m from them if you can
  • Wearing a face mask on public transport and in indoor public spaces

Whilst at home:

  • Regularly wash your hands, especially on arrival home
  • Avoid touching your face
  • Clean frequently touched surfaces

You can also help protect the person you live with by getting vaccinated and by getting tested twice a week, even if you don’t have symptoms. You can order free home tests that give results in 30 minutes.

We would also recommend that you speak to your employer and let them know you are a carer for a very high-risk person. They may be able to help you minimise contact with others throughout the day by changing when you work or the tasks you need to do.

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