Advice for mesothelioma patients during the coronavirus pandemic, from No Time to Lose supporter Mesothelioma UK
This is a particularly worrying time for everyone, but especially for those with an existing serious illness.
With this in mind and to coincide with this year’s Global Asbestos Awareness Week (1–7 April), Mesothelioma UK Head of Services and Consultant Nurse Liz Darlison MBE addresses some of the primary concerns of mesothelioma patients in connection with the coronavirus pandemic.
Q: What is happening for new patients and will they receive their diagnosis as easily?
A: The hospitals are working hard to ensure that the 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.
The teams are helping local efforts. However, it is still business as usual in terms of receiving referrals and helping individuals to 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 a risk to bring them into hospital or perform more invasive investigations.
Generally speaking, CT scans, X-Rays and so on are still going ahead for patients who need them. Some Multi-Disciplinary Team (MDT) meetings are still going ahead, and some are on limited staffing. As much as possible, normal services will continue. If anyone has any particular concerns, they should get in touch with their local team or call the Mesothelioma UK information line on 0800 169 2409.
If patients are worried about signs or symptoms of mesothelioma, then please continue to reach out to us. If anyone is showing signs of having COVID-19, please call 111 who will be able to advise you further.
Q: Do you expect all mesothelioma patients to be on the list of 1.5 million people to self-isolate for 12 weeks? If they don’t receive a letter, who do they contact to find out?
A: The www.gov.uk website doesn’t explicitly list mesothelioma patients. We have asked several experts who have confirmed that yes, mesothelioma patients need to be shielded from any unnecessary contact or exposure. Patients can register themselves on the extremely vulnerable list by going to www.gov.uk/coronavirus-extremely-vulnerable. GP surgeries can also add patients to that list. If patients need help or guidance with using the website they should reach out to relatives, friends or professionals who may be able to talk them through the steps.
Q: Should people follow the shielding advice for someone who is elderly, frail and has terminal cancer and is being cared for by a relative or friend?
A: It is very difficult for carers who are put in this predicament. The government website states that in these instances it is your call on how far you take the precautions. What we would advise is that carers can uphold the shielding advice and still have some degree of contact – for example, increase cleaning of door handles, use separate cutlery and make no close contact. Patients and carers should, as much as possible, follow the shielding advice but look at their own personal circumstances and consider how far they need to take it. If anyone needs more support on a one-to-one basis, please call our information line and one of our nurses will be happy to speak with them.
Q: If a patient has been accepted onto the CONFIRM (CheckpOiNt Blockade For Inhibition of Relapsed Mesothelioma) study, and treatment is due to start soon, will it still be going ahead?
A: The CONFIRM study has now closed its recruitment. However, there will be a few patients who 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 patients’ susceptibility to the virus.
If a patient is younger with fewer health problems, currently it is more likely that their treatment will go ahead. If, however, they have other health problems and are elderly, it is likely that a more careful look at the risk will be taken. This is a very fast-changing situation as we all know, so don’t think that a decision that is made today will stand for the duration of this crisis. Patients should please keep in touch with their local teams.
Q: Should patients attend routine scans?
A: The official line on that is: yes. Currently, routine disease surveillance 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 the visit. Patients should get dropped off and picked up so they’re not taking anyone else in with them. Some long-term mesothelioma patients who have three-monthly CT scans have made the decision that they will perhaps skip the next CT scan after their own personal risk assessment. On an individual basis, patients should feel free to speak to their 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 scans or to skip one. Routine clinics to discuss the results of the scan are now by telephone. Please ensure your phone number is up-to-date on your records.
Q: If someone with mesothelioma contracts COVID-19, are they likely to be treated?
A: Yes. If patients unfortunately find themselves severely unwell with COVID-19, the healthcare team will do everything they can to treat them. The bottom line is that 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 of having to make really difficult decisions.
Q: Should patients let their mesothelioma team know if they contract the virus?
A: Yes, please do. If they are able to, they will be keen to come and see if they can add anything to the patient’s 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 at www.mesothelioma.uk.com and social media for updates, information and Facebook Live Q&A sessions.
Call the Mesothelioma UK information line on 0800 169 2409 or email [email protected]