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Testing and results during COVID UK

Hi everyone,

I hope you’re all ok and keeping well mentally and as physically possible during this difficult time.

I had a question regarding testing and getting results here in the UK during our lockdown. I’ve not received any correspondence from my hospital regarding being “high risk” as in the guidelines recently published. But I am exercising what’s been recommended and will not leave home for 12 weeks.

I am due to have blood drawn on the 20th April and my results were due on May 22nd.

I’ve tried calling my haematology department several times to be greeted only by answer phone. I am leaving messages and no one is getting back to me. I understand the NHS is overrun but getting a little concerned as to what to expect. Is it likely a district nurse will come out to take blood and I’ll get results via phone rather than face to face as usual? If getting results isn’t worrying enough at the best of times. At 18months back in October I was just shy of MMR @0.118% I am so hoping for MMR this time around it will certainly make this time less concerning...

Take care all (sorry for hypothetical questions)

Alex

Hi Alex ,I have been thinking the same thing,there is no way I will go in to clinic now or have a nurse in my house ,

don't think any of us will have blood tests done this time around they are just too busy .Probably our docs will just make up our prescriptions at the correct time ,phone us to say they are ready and leave them at the pharmacy to be picked up or maybe posted if we don't have someone to pick them up for us .Keep well ,Denise.

Hi All,

I have come across an article entitled Care of haematology patients in a COVID-19 epidemic-it does not refer specifically to CML patients but to cancer patients as a whole.

Under the heading phlebotomy it suggests that one option is to extend the interval for testing as waiting  in such clinics is not advised because of the risks involved for patients such as us that have been described as extremely vulnerable.It suggests that we might wait outside in car parks to be called in at the last minute but this is fine in theory but if the system is overwhelmed then putting this into practice is difficult.

For outpatient clinics as long waits have risks it suggests specialists undertake telephone consultations or to wait outside until called.Medicines- it suggests delivery by courier or drive through collection-the latter I am not aware of in UK.

If there are deemed to be 1.5 million in England (or UK?) who are thought to be extremely vulnerable then especially for cancer patients then some form of policy needs to devised for outpatient appointments.

In my area the main NHS hospital is being adapted over to concentrate on corona virus treatment and the private hospitals have been contracted to undertake the urgent surgery cases;so main hospitals will be kind of place we should avoid.

If one million people in UK have contracted the virus and if Jeremy Hunts figures are correct then 1 in 60 persons out there might be a carrier or spreader.Data from studies in China suggest that because of  the immunosuppressive nature of most cancer therapies cancer patients have a higher incidence of severe events when exposed to the virus are are likely to need intensive care /ventilation/death-39% versus 8% in patients without cancers.

If one were to add in other co -morbidities that cancer patients might have then the risk factor is even higher.The article suggests haematologists might consider reducing the dose or stopping in order to alleviate the immunosuppressive nature of treatments but for us that is unlikely to be an option.

If one adds in a few other factors (not in the article) such as age and being over 70,being male as opposed to being female  and in blood group A as opposed to O (studies from China) then some of us are at considerable risk.

Some GPs are willing to take bloods on behalf of specialists and forward them on prior to a hospital appointment but I understand that they cannot prescribe tkis because this can only be done by hospital doctors and the finances of these drugs comes from specialist services funding from government to hospital trusts.

I have not yet had a letter to say that I am at risk in the group extremely vulnerable;I have registered on the relevant government website and today received an alert to stay at home.I am not sure when and by what means the NHS will be able to announce or implement a policy to deal with outpatients such as ourselves with haematological malignancies.

With best wishes

John

The NHS LETTER is a primary care letter, i.e. GP letter, and marked "Yours sincerely [name of GP practice] [GP telephone number]". This makes sense because the GP will consider all conditions. I notice that on the GP database each condition has a code. Historically, my GP entered a code for CML and entered this on "Systmonline". Clearly, there has been an electronic exercise here where the database selects all codes which place a patient into the highest risk group. Whether the GP manually intervenes is unclear. Presumably, each time a GP receives a letter from the consultant then he/she should enter the new information on the database.

Boris Johnson did say that the LETTER exercise would be electronic and possibly imperfect.

So far, I understand that haematology will be bringing people in for blood tests.

Thanks Denise,

Glad I am not the only one with these questions. I've just moved home and it's impossible to get through to anyone to change my contact details. Getting any correspondence is looking unlikely at the moment.

Regards

Alex

My consultant just phoned me and said “You’re not high risk as their is no evidence that Nilotinib suppress the immune system” he said just carry on following govt advice until this “nonsense” is over. His words. I am not sure if other TKI might suppress immune system though and he only mentioned my treatment. So if you’re unsure maybe best to speak with your consultants.

I will be isolating for 12 weeks anyways.

We will all be getting communication in the form of letters or texts as previously mentioned. He did say when I go in for bloods it’ll be empty and the results he will give by phone.

All the best everyone.

Alex

Hi Alex, you have to question somebody who describes this situation as “nonsense” and I question if anything to do with cancer of the blood isn’t high risk then why have I bothered taking 800mg Nilotinib for the last 5 years! You’re consultant needs to choose their words carefully, I’ve not heard Boris Johnson use the word “nonsense” in any of his conversations with the country, and I bet the doctors or nurses don’t use that word when they start their shifts, probably doing the worst job in the world at the present time. Peter 

Hi Peter

My consultant has a funny way about him but I trust him completely and I believe he meant it in jest. Luckily for CML patients it doesn’t “appear” to be an issue in that it doesn’t suppress the immune system. I believe he was referring more to the fact that we as CMLers have been included in the high risk area, as it just mentions Leukaemia, blood cancer, bone marrow for which we all qualify but luckily for us due to our amazing treatment we are at no greater risk than the general public but it is advisable to follow govt advice... which I will be doing.

All the best

Alex

Hi Alex, probably the whole situation is getting to me already, I need to calm down, but I read the situation like this, everyone is high risk, the corona virus isn’t bothered who gets it, but if a person has a underlying condition (Cml) and gets this virus the hospital will be treating you for 2 conditions, Cml and corona virus, I’ve been in hospital twice for a week, on each occasion I was kept in a single room  due to compromised immune system, I didn’t make that decision the doctors did. Sorry to go on! Peter 

I am sure what your consultant meant was the 'nonsense' that CML patients who have a good response to TKI therapy (no matter what TKI) should not be included in the 'high risk' category. the NCRI CML subgroup tried to get CML changed to the moderate risk category but did not succeed. 

Please read the NCRI recommendation at the top of the forum- this took considerable effort and was done in the hope that it would help CML patients (who do not have other medical issues) remain confident that their risk is the same as the general population.

I have cut and pasted the relevant message from NCRI subgroup on this thread..... Nevertheless we are still required to follow the 12 week quarantine. 

Are CML patients at higher risk for a more severe COVID-19 infection?

  • Patients with CML do not appear to be at a higher risk of getting COVID-19, although data is limited.
  • Having a diagnosis of CML or being treated with TKI therapy does not convincingly cause clinically significant immune suppression.
  • CML patients can be at a higher risk of COVID-19 infection if they are older (age over 70 years), have other medical conditions or are receiving other treatment which will suppress the immune system.
  • There are no published data on the course of the COVID-19 infection in CML patients treated with tyrosine kinase inhibitors (TKI) and reports are rare. Reassuringly, very few CML patients on TKI therapy were infected in the Hubei province in China, and the outcome was similar to the general population.
  • Self-isolation (self-quarantine) for 12 weeks is recommended for at-risk individuals, but in our medical opinion, the diagnosis of CML or treatment for CML alone does not fall in this category.
  • The life expectancy of CML patients is currently approaching that of the general population. The decision to place CML patients on TKI therapy in the high-risk category for COVID-19 infection must not have a negative impact on triage or other in-patient treatment related decisions, due to their excellent outcome.
  • Patients should not interrupt or reduce their TKI medication without the advice of their CML specialist team.

NCRI CML Sub-group:

Dr Dragana Milojkovic (Chair); Prof Jane Apperley; Dr Jenny Byrne; Prof Richard Clark; Prof Mhairi Copland; Sandy Craine consumer representative; Prof Nick Cross; Dr Joanne Ewing; Prof Letizia Foroni; Dr Paolo Gallipoli; Dr Andrew Goringe; Prof Brian Huntly; Dr Hugues de Lavallade; Dr Andrew McGregor; Prof Adam Mead; Dr  Kate Rothwell; Prof Stephen O'Brien; Prof Oliver Ottman; Dr Seonaid Pye; Dr Anuparna Rao paediatric representative; Dr Graeme Smith; Richard Szydlo MSc,PhD; Dr Andres Virchis. Trainee members Dr Simone Claudiani; Dr Gillian Horne.

Exactly thanks Sandie.

Completely understand Peter the situation certainly isn’t a joke. And this is only adding to our already “difficult” diagnosis.

I am sure things will go back to normal (well our normal) very soon. Stay safe and stay well.

Alex