Mesothelioma & Coronavirus
If you have any advice or supportive comments for fellow mesothelioma patients or their families please post them on our social media pages or tag @MesoUK in your post. If you are unsure how to do this please forward to us at firstname.lastname@example.org or contact the information line.
Stay safe and please remember we are here for you and will do all we can to maintain our support throughout this challenging time.
Information for mesothelioma patients regarding COVID-19
If you are a mesothelioma patient or a family member of a patient, with concerns or questions about coronavirus Mesothelioma UK recommends the Cancer Research UK guidance. It includes frequently asked questions and useful links for further information and advice.
In light of the current Covid-19 “Shielding” policy, most follow up appointments have been moved to telephone calls rather than face to face. Here is a checklist of things that will likely be discussed during a telephone follow up appointment. This has been prepared for those people living with Mesothelioma but could be easily adapted for other cancers.
Below are some frequently asked questions, including those asked and answered in our Facebook live videos, but please contact the information line on 0800 169 2409 if you have further questions.
Mesothelioma UK considers patients to be at high risk from coronavirus (read more on the NHS website), based on advice from mesothelioma medical experts.
Please therefore follow the guidance on shielding.
This guidance is different to the 'social distancing' measures put in place for vulnerable people, please read and follow the advice from Public Health England.
People identified as extremely vulnerable who need support with deliveries of food and medicine can register here:
If you go onto the .gov site, it doesn’t explicitly list mesothelioma patients. We have asked several experts who have confirmed that yes, mesothelioma patients need to be shielding from any unnecessary contact or exposure.
To get register yourself on the extremely vulnerable list, go to https://www.gov.uk/coronavirus-extremely-vulnerable and register online.
GP surgeries can also add patients to that list. If you need help or guidance with using the website please reach out to relatives, friends or professionals who may be able to talk you through the steps.
The government is allowing people with certain medical conditions to register for support during the COVID-19 crisis. Even if you have not yet received a letter from the NHS telling you that you are clinically extremely vulnerable, as a mesothelioma patient, we would urge you to register if you do not have a reliable source of support from, for example, family, friends and neighbours. The government support will take the form of emergency food supplies and delivery of medication. However, it could take time for any support offered through this service to arrive and, undoubtedly, there will be local and regional variations in the level of support.
The online application process is simple. You can register yourself or on behalf of someone else at:
The government have identified a number of medical conditions including “severe respiratory conditions” which would make someone clinically extremely vulnerable. As a mesothelioma patient you would fall into this category.
There are benefits of registering as an extremely vulnerable person, and after speaking with a number of benefits advisors and cancer experts, they have confirmed that if you have mesothelioma then you should be on this list and should follow the shielding advice the government has provided us with.
If you don’t have family or friends to help collect food or prescriptions etc then you will be able to tap into a whole army of NHS volunteers who are supporting the extremely vulnerable. If you do have family or friends around you but are following the shielding advice and no one is able to leave or enter the house, then you can also access some of the online shopping slots that have been reserved for those who are shielding.
Some of you may have received the letter stating that you are registered as an extremely vulnerable person, but if you haven’t we would urge you to register at https://www.gov.uk/coronavirus-extremely-vulnerable. Although it does not give you a definitive list of all the health problems that would render you as being extremely vulnerable, having looked at the list we have decided that you would meet the criteria for a severe respiratory illness, which includes cystic fibrosis and COPD.
The list is not definitive, and it is our professional opinion that mesothelioma patients meet this criteria, so we would urge you to tick this box and therefore register to be extremely vulnerable. Having looked at some of the online supermarket websites, some of them tell you automatically if you are recognised on their portfolio as being vulnerable. If you are not, most have a freephone number you can call to discuss this and hopefully be accepted for their reserved slots.
The government is in the process of sharing information about people registered at the link above with the UK's supermarket chains. The intent is to allow clinically extremely vulnerable people to access priority on-line delivery slots.
Additionally, Sainsbury’s will give you access to priority home delivery slots if you are over 70 years of age. You can get access to these slots by calling 0800 953 4988. Please be patient as it may take time to get through.
It is very difficult for carers put in this predicament. The government website states that in these instances it is your call how far you take the precautions. What we would advise is that you can still uphold the shielding advice and still have some degree of contact, i.e. upscale cleaning of door handles, use separate cutlery and no close contact. As much as possible follow the shielding advice but look at your own personal circumstances and consider how far you need to take it. If you need more support on a 1:1 basis, please call our information line and one of our nurses will be happy to speak with you.
Official government guidance and updates to shielding can be found on www.gov.uk
(search “shielding”), the latest update advised that although people who are shielding
remain vulnerable they could leave home if they wish as long as they are able to maintain
strict social distancing. More detailed guidance on appropriate social distancing measures
when you leave the house is available at:
The guidance is just that, guidance, it is not the law and it is your choice to decide whether
to follow the measures the government advises but this is what is recommended for your
own personal protection.
The current advice is to shield until the end of June however guidance can change without
any prior notice so we would suggest checking www.gov.uk at least once a week for any
The government support scheme to provide basic supplies, priority supermarket deliveries
and prescription deliveries is still active at https://www.gov.uk/coronavirus-extremelyvulnerable
You can still register for help for the first time or re-register if you have had a change of
You can also get support from NHS Volunteer Responders at https://www.
NHS Volunteer Responders offer support with grocery shopping, collecting prescriptions,
patient transport and “check in and chat” phone calls. Please call 0808 196 3646 (8am to
8pm) to arrange support.
Some people might struggle with their mental health over the coming weeks, and the organisation Mind has some valuable information on how to look after your mental health at this time.
Your health care team will be doing all they can to minimise the impact to your treatment and care. They will be weighing up the risks versus benefits which will differ for each patient.
If your cancer treatment has been paused, deferred or cancelled it is because your cancer team have weighed up the risk v benefit for you individually. It is not a capacity issue or a directive from NHS England but a clinical decision for each patient
It is likely over the coming weeks and months that your health care team will be asked to support local efforts. This may mean clinics will be cancelled or alternative consultation methods may need to be used such as video or telephone calling. You may also find it hard to contact your keyworker or nurse. Please ensure your contact details are up to date in your medical records and perhaps familiarise yourself with video calling options such as Facetime and Skype.
Ensure any medication you are using regularly is on repeat prescription to avoid unnecessary trips to the GP surgery.
This is a concern for any cancer patient who has started their chemotherapy during or prior to the corona pandemic.
The advice is different for different cancers, so don’t think if you’ve heard a different cancer patient’s story that this will be applicable to you, there are a number of variables to be considered, i.e. other healthcare issues, where you are in your treatment, and it depends what your response to that treatment has been.
The bottom line to this question is that we would advise you to reach out to your cancer team who will be able to make a decision based on you as an individual, your disease, your health circumstances, what you are trying to achieve and where you are in your cycle of chemotherapy. For some patients the chemotherapy will continue, it may be that they have to make adaptations such as adding additional drugs to support your immune system or lower other doses.
For some patients they may feel that they have reached a point where it is safe to pause the chemotherapy or stop for the time being.
If your cancer treatment has been paused, deferred or cancelled it is because your cancer team have weighed up the risk v benefit for you individually. It is not a capacity issue or a directive from NHS England but a clinical decision for each patient
Please be reassured that Mesothelioma UK will continue to try and ensure a Mesothelioma Nurse Specialist is available through our information line to answer individual questions and concerns.
If you are struggling to contact your local Mesothelioma UK nurse please ring our information line on 0800 169 2409.
The hospitals are working hard to ensure those patients most in need, irrespective of the COVID-19 virus are still going to have their needs addressed, and the healthcare teams working in the diagnosis of mesothelioma patients are still active. Yes, they are helping local efforts, however now it is still business as usual in terms of receiving referrals and helping individuals get the investigations that they need. For some patients there will be a risk vs benefit assessment and some patients may be considered too high risk to bring them into hospital or perform more invasive investigations. Generally speaking, those patients needing CT scans, X-Rays etc are still going ahead.
Some MDT meetings are still going ahead, and some are on limited staff. As much as possible, normal services will continue. If anyone has any particular concerns, please get in touch with your local team or call the Meso UK information line.
If you are worried about signs or symptoms of mesothelioma then please continue to reach out to us. If you are showing signs of having COVID-19, please call 111 who will be able to advise you further.
In some trials, if you miss more than two sessions you can be rendered ineligible to continue with the trial. Although we can’t be sure if they will make amendments to these trials for those patients who are unable to continue during the pandemic, we will be reaching out to clinical trial investigators if they are thinking about making amendments to trials.
Some trials will affect your immune system. It’s always a balance between upsetting the possible outcome of the trial if too many amendments are made.
The other thing to note is whether you’re on a trial or not, your medical team will be assessing you and whether it’s safe for you to continue or not, and will do everything they can to ensure that, going forward, you can recommence the treatment further down the line or look at alternative treatments once we’re through the acute phases of this pandemic.
We recognise it’s not ideal and that it adds to the stress and anxiety of living with a mesothelioma diagnosis, and we wish that we could assure you that your treatment will not be affected, but we can assure you that everything will be done to minimise the risk and maximise the benefit for each of you as individuals.
The CONFIRM study has now been closed recruitment, however there will be a few patients that are caught in a situation where they have been accepted to start a study but haven’t yet started their treatment.
As far as we are aware, the treatments are likely to go ahead, but they will be carried out after a risk vs benefit assessment of the individual. We have spoken to oncologists about the impact of immunotherapy on the risk of COVID-19 and there are still a lot of unknowns.
Immunotherapy is a relatively new treatment in cancer care, and we are not yet sure of the impact on patient’s susceptibility to the virus. If you are a younger patient with fewer health problems, it currently is more likely that your treatment will go ahead. If, however, you have other health problems and are elderly, it is likely that they will look more carefully at the risk.
This is a very fast-changing situation as we all know, so don’t think that the decision that is made today will stand for the duration of this crisis, and please keep in touch with your local teams.
The official line on that is; yes.
Currently, routine disease CT scanning is still going ahead. The advice is to go straight to the CT department and leave immediately after, and of course to remember hand hygiene throughout your visit.
Please get dropped off and picked up so you’re not taking anyone else in with you. Some long-term mesothelioma patients who have three monthly CT scans have made the decision that they will skip this CT scan after their own personal risk assessment. On an individual basis, please feel free to speak to your healthcare team, or speak to one of our specialist nurses on the information line, as in some circumstances it may be acceptable to prolong the interval between your scans or to skip one.
You will now be contacted via telephone to discuss the results of your scan, so please ensure that your phone number is up to date on your records.
The first thing to note is that although you may have an appointment time, it is unlikely you will receive a call exactly at that time. Please be available to take a call either that morning or afternoon, during the clinic session.
Not all phones have a loudspeaker facility, and if you have a family member you would like to listen in to your consultation, please practice with your phone prior to your appointment to familiarise yourself with using the speakerphone. If you need to transfer the call to another phone, such as a mobile number, please let the consultant know at the beginning of the call and ask them to add this number to your file for future calls.
It may not be a member of the team that you are familiar with who calls you, although they will try their best to pair you with someone you have met before. We have prepared a checklist of things to have ready ahead of your call:
- Your NHS number: The person calling you will likely check your name and date of birth and possibly your NHS number too.
- Your diagnosis: Your diagnosis should be stated on your clinic letter and this will be helpful to confirm your type of mesothelioma diagnosis and the date of it.
- Information about treatment you have received: It will help the clinician if you are able to confirm the treatment and dates that you have received it, i.e I had radiotherapy between 2 and 15 Jan and I had 10 treatments. Also, any information about any anti-cancer systemic treatment, such as chemotherapy. Where they in a clinical trial or not, how many cycles have you had, what date did you have them, and most importantly what was your response to the treatment and how did you cope?
- The date of your last CT scan: It is likely that the clinician will have this information to hand, however it will be helpful if you can confirm this.
- Any medication that you are on currently: It is important to notify any changes to any medication you have been taking.
- How are you feeling? : Have a good think before your call how you are generally feeling; are you in any pain and if so has it worsened recently? Are you feeling breathless? Do painkillers alleviate some of your pain? Also think about your energy levels and your appetite, it is helpful to weigh yourself before your telephone appointment. If you have had a surgical procedure recently, they may want to know how your wound is healing. Have you noticed any signs of infection or any lumps or bumps on your wound? If you have a permanent chest drain, they will also ask the usual questions about how you are managing your chest drain and if you have any concerns.
- Write down any concerns or questions you have: It will help you to have these to hand during your call. At the end of your call, please clarify what the next steps of your treatment will be, such as a repeat CT scan or blood test, so that you can make a note of this. This is also a good opportunity to check who they recommend for you to contact during this pandemic if you have any questions relating to your care.
We would urge you to avoid public transport where possible.
If you’re having immunotherapy and are managing without too many side effects, we would advise that you drive yourself to your session and arrive just in time, do not linger around the hospital, and follow hand hygiene. If someone comes with you, we advise that they remain in the car and do not enter the hospital as we are trying to keep the footfall in hospital down to a minimum.
It is possible that they may make some adaptations to your immunotherapy, such as space the treatments further apart or pausing the treatment. Similar to chemotherapy, they will make an assessment and asses the risk vs benefit and will discuss this with you to find a treatment schedule that is most appropriate given the risks of the current pandemic.
Again, do contact your Clinical Nurse Specialist, cancer team or our helpline, if you would like to talk through this on an individual basis. Yes, you can travel, but avoid public transport, and avoid taking anyone with you unless absolutely necessary.
Yes. If you unfortunately find yourself incredibly unwell with COVID-19, the healthcare team will do everything they can to treat you.
The bottom line is, we don’t have an ABC of proven treatment for this virus, so in each individual case it will be judged on risk vs benefit. All I can say is that I am based in a large teaching hospital, and I have seen the huge effort to prepare for the surge in patients to come, and to try and make sure that healthcare teams are not put in the position to have to make really difficult decisions.
Yes, please do. If they are able to, they will be keen to come and see if they can add anything to your treatment pathway. I would also say that please don’t think that it isn’t worth seeking help if you do start showing signs of the virus, as healthcare teams will do all they can to maintain treatment for everybody.
Finally, please be assured that Mesothelioma UK staff and nurses are doing all they can to support you and the NHS. Do not hesitate to call our information line, or email us if you have any questions or concerns. Keep checking our website and social media for updates, information and new Q&A sessions.
Yes, you are more vulnerable and are listed on the government website to say that you are more vulnerable. Please ensure that you have your emergency pack available to you, which includes an urgent supply of antibiotics.
It is worth considering hospices in your area as an option. Hospices have been looking at their bed capacity and are trying to support patients with a life-limiting disease who would otherwise perhaps be in hospital for that particular part of their treatment or care.
It might be worth reaching out to your local GP, palliative care service or Clinical Nurse Specialist and asking what measures have been put in place for cancer patients who are not fit enough to return home. There are also “hospice at home” services that might be available to support people in an early discharge capacity, so once again please reach out to the teams who may be able to advise what options there in this current situation.
Do Not Resuscitate (DNR) orders are something that hospitals do have to face, and patients are always at the centre of this decision. Doctors are responsible for making the order, and it is done with the patient’s best interest at heart.
A DNR order means if all treatments have failed, if all attempts to improve someone’s physical health should fail, do we want to take that final step and attempt to resuscitate? Usually doctors will have this discussion with someone when, through experience and evidence, we know that attempts to resuscitate the patient would be quite futile. It is a common discussion with patients in a hospital setting, and GPs are now calling people to talk about this as they know the vulnerable patient best and because they want to have that difficult conversation with them, rather than someone ending up in hospital, possibly with COVID-19, with a healthcare team who don’t know the patient’s background, their frailties and other health problems in the same way that their GP does, having to make a decision at the time, or going through what can be a very challenging clinical experience when the outcome would be futile.
This is why we believe GPs have been picking up the phone and discussing this with mesothelioma patients. We understand that people may feel that the call is out of the blue, or rushed or inappropriate, and we’re sorry about that but we are certain that GPs have been doing this to ensure that patients are put at the centre of this decision during a pandemic situation. If a DNR order has been playing on your mind, https://compassionindying.org.uk/ has some useful tools to help you think about this for yourself.
You can make it clear what your preferences would be in regard to preserving your life or improving the health problem you have, such as; yes please I want antibiotics, I want pain relief etc, and should all of this treatment fail, and the reason that I was admitted to hospital continues to cause me to physically deteriorate then I do not want a cardiac arrest resuscitation attempt. In A DNR order you are not saying “I don’t want all of those things”, you are saying yes, I do want treatment and every medication going to support me, but I do not want a cardiac resuscitation. An order means you can direct your treatment and care plan.
If you had a conversation with your GP which didn’t go as you’d expected or if you want to talk about this issue further, please feel free to call us to speak with a mesothelioma specialist nurse or call your key worker, who will be happy to discuss this further.
Yes, benefits for mesothelioma clients are still being prioritised and our welfare adviser hasn’t
experienced any noticeable delays in processing applications. The DWP has amended its normal application procedure to allow representatives to sign the benefit forms on the
clients' behalf so home visits are not necessary. The DWP will phone the client to confirm
the application is genuine. Our benefits and welfare advisers are able to offer benefits advice via phone, email and video chat.
Yes, if you were employed before 19 March 2020 you may be eligible for the
Coronavirus Job Retention Scheme (CRJS) under which you can be furloughed at 80% of
your salary (maximum of £2,500 per month) up to the end of August 2020. Your employer
has the discretion to choose whether or not to pay you the remaining 20%.
The scheme is planned to continue until the end of October however from August
employers will be asked to pay an increase proportion of furloughed staffs salaries,
National Insurance contributions and pension contributions (August 5%, September 14%,
The final date an employer can furlough an employee for the first time will be 10 June
Statutory Sick Pay (SSP) is also available as a safety net if you are unable to work or to be
furloughed under the CJRS. SSP is £98.85 per week. If you are receiving SSP I would
advised you to contact Mesothelioma UK helpline and request a full benefits check as the
reduction in your income may mean you now qualify for additional benefits.
You might also be entitled to contractual sick pay while you are shielding, please check
with your employer.
Yes, an employer can use the CJRS to furlough someone who is temporarily unable to
work because someone in their household is shielding however this is at the discretion
of the employer. If you are in this position and have been refused the option to
furlough please contact the Mesothelioma UK helpline and we can provide further
Remember 10 June 2020 is the last date that someone can be furloughed if they have not
been furloughed before.
Video interviews and discussions between those in the mesothelioma community to give you a better insight into what is happening during this pandemic.
During the period of self-isolation caused by Covid-19, it is important that mesothelioma patients (and anyone else!) keep active as best they can.
Julie Roberts has very kindly made some videos to show some simple exercises.
Julie is a Pilates teacher and lost her dad to mesothelioma in 2014 (read her story here). Based in Scotland, Julie has been a passionate supporter of Mesothelioma UK and a relentless campaigner to raise awareness of the disease.