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WMUK responds to latest relaxation of shielding for patients with Waldenstrom’s macroglobulinaemia (WM) in England

Shielding
Advice for Waldenstrom's macroglobulinaemia (WM) patients from Dr Shirley D’Sa, WMUK trustee and lead WM clinician at UCLH, in response to the Government's plans to ease shielding for people who are shielding in England, from Monday 6 July.

For many, the Government plans to ease shielding guidance will be a huge relief, as the past three months have been long and stifling. For others, this change will heighten anxiety levels, raising concerns about the basis for the change and the implications for health. The balance between staying safe and maintaining physical (being able to go out and exercise) and mental health (keeping in face-to-face contact with family and friends, retaining a sense of normality by performing usual activities) is important.

However, every individual will have their own sense of what is important to them and, regardless of the advice and guidance offered by the Government and their medical team, will ultimately need to make their own decision about how to act on the latest guidance.

The last few months have seen a spectrum of outcomes from COVID-19 infections. We have witnessed persons in seemingly good health succumb to the disease, and others with blood cancers prevail in the face of COVID-19. This backdrop provides a warning that we cannot be complacent about risks as they remain uncharted and incompletely understood.

Regarding experience with Waldenstrom's macroglobulinaemia patients, although data regarding all COVID-19 cases are being gathered across NHS sites, this is still in the early stage and the data are not robust enough to provide tailored guidance. Discussions with colleagues across the UK have provided experience similar to my own: varied outcomes, not confined to subgroups such as those on chemotherapy or ibrutinib. The influence of other health issues and age is also seemingly variable.

Basing clinical advice on anecdotal evidence is undesirable. The last three months have not provided clarity about how to change the recommendations regarding shielding. We have all become more accustomed to the presence of COVID-19 in our lives and the NHS feels more prepared to handle cases. For many this familiarity eases our anxieties to some extent (the ‘new normal’) but we must bear in mind that there is no treatment yet available and testing is still in an experimental stage. There is more testing available, and the reliability of the tests has improved, but more work is needed before there is a clear blueprint for using testing as a means to ease shielding.

The main role for testing at present is to keep health facilities such as hospitals as COVID-free as possible. Most hospitals have a requirement for testing prior to planned appointments for scans, bone marrow biopsies, visits for chemotherapy and non-urgent surgery. In some cases, the requirement includes a 14-day quarantine and a negative test result. Emergency cases are tested routinely to segregate COVID-19 positive and negative patients in hospitals. Many outpatient clinics remain telephone based with the option of having blood tests quickly (in and out) ahead of a telephone consultation. Face-to-face outpatient visits are carried out with prior verbal screening and a temperature check on entry to the hospital.

So what to do about relaxation of shielding? Based on the context outlined above, I would advise the following principles to be applied:

Consider your own situation carefully

  • Have you ever had chemotherapy – if so, when did this finish? If you have had chemotherapy within the last 6 months, you are likely to be more immuno-suppressed than if you had not, so greater caution is recommended.
  • If you have never had treatment for your WM, your immune system will not have been subjected to suppression due to therapy. However, having WM itself is suppressive to the immune system for various reasons, so having the disease even without treatment poses an unquantifiable risk. Caution is advised, but this may prove excessive in retrospect.
  • Are you having chemotherapy right now? If so, what does it consist of? We do not know how chemotherapy or rituximab compares with treatments like ibrutinib in terms of risk. Caution is advised in both scenarios until we know more.
  • As things stand, how is your general health – are you energetic, able to walk freely without impairment, is your breathing normal? If you can answer in the affirmative to all these questions, you are better off than those who have such impediments for various reasons. Accordingly, bear these factors in mind when deciding how to act.
  • Do you have high blood pressure or heart disease or diabetes or other conditions? If so, are these well controlled or unstable? (if your condition is stable on medication, this suggests that your body is acclimatised, and is functioning reliably). If not well controlled, then this should be your and your doctor’s priority - to optimise what can be optimised; blood pressure control, diabetic control, heart failure etc. This may require a review of your medication and increased monitoring (a lot of which you can do at home with relevant monitors etc). Take these factors into account when making your decision about shielding.
  • Have you been experiencing recurrent infections in recent weeks or months (even before the pandemic)? This suggests that your immune system is already under par, so suggests that your risk from COVID-19 may be greater. Are you on immunoglobulin replacement (IVIG) or regular antibiotics? Discuss with your healthcare team if you are unsure and seek their advice about your vulnerability and ensure that there is a plan in place to limit your risks as far as possible, or how to seek help if you become unwell with a non-COVID infection.

Who is in your household?

  • Do you live with another ‘vulnerable’ person, for example someone over the age of 70 years or someone with ill-health problems? Then the individual and combined risks will need to be considered when deciding how much you will mix with others.
  • Do you have a family member who needs to go to work? Can their work be adjusted to limit their risk to you? Could they work from home? Will they be able to use appropriate protective measures at work to protect themselves (and you)? If the answer is no, then you will need to decide, as a family how to address this issue. You could ask your WM specialist team or GP to write a supportive letter to share with the employer in question. If your family member has to go into work, they should use a mask in confined spaces, employ regular hand washing and hand sanitisation, and consider removing work clothes and washing them immediately on returning home, as well as showering before they come into contact with you. In addition, any surfaces that they may touch can be disinfected with wipes etc. None of this guarantees protection, but every action may help to limit the risk.
  • Do you have children who need to attend school?  If so, it may be preferable to defer their attendance until September when further optimisation of managing group activities has occurred in different institutions and organisations. If children have been attending school already then, the above measures as applied to a working member of family could apply to the children as well.

If you go out, how far can you venture?

  • Do you have a garden or a quiet locality in which to step out without encountering other people? If so, it is probably safe for you to venture out for exercise whilst socially distancing. As an additional measure, you could wear a mask and avoid touching objects.
  • In general, it is advisable to remain outdoors rather than within a confined space such as shopping malls, where you will undoubtedly encounter other people. Ask yourself if you really need to go! As venues such as restaurants, museums and theatres put social distancing measures in place, it may become safer to visit them whilst employing common sense precautions such as social distancing, wearing masks and use of hand washing hand sanitisers.
  • Ideally the use of public transport should be minimised, but if you have to then it is mandatory to use a mask and to employ common sense social distancing and hand sanitising measures. If you can travel by car instead this would be preferable.

 

Remember that there is no blueprint for behaviour in COVID-19 times. Each of us will need to exercise some judgement in how we proceed.

Above all, make sure to discuss your circumstances with your GP or medical team if you are in doubt.

Dr Shirley D’Sa
WMUK trustee
Consultant Haematologist and WM lead at University College London Hospitals

 

 

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