MPN, Polycythemia Vera.

Hi  and welcome to the Online Community, although I am sorry to see you finding us.

As someone who has lived with a rare type of blood cancer for over 20 years and even although I am now 4 1/2 years in remission I would see any blood related disease to be a risk.

I am not an expert but the little I do know is that MPN, Polycythemia Vera can weaken the immune system making you open for infections.

Is this question in relation to the ongoing Covid19 pandemic?

You may want to post your question to our nurse team in our Ask an Expert section as they can give you a more informed answer.

Take care - stay safe.

Thanks for your answer.Yes, it is related to Covid 29 pandemic. You must know that I am a Complex Care carer, and my work is not compatible with social distancing. As PPE is rather inexistent and because of some other health problems my GP wrote a letter to my employer and I am furloughed now. The letter from NHS saying that I am not vulnerable and I was removed from the  list shocked me as high blood pressure, cutaneous polyarteritis nodosa and nonhealing leg ulcers are other health problems I have. The criteria list is not comprehensive, that my opinion and by no means I am willing to work out in the community under these circumstances. I am concerned that I might lose the furloughed status !

Hi 

According to the MPN Voice website ALL MPN patients are classed as Extremely Vulnerable.

You may get further info here at MPNVoice.Org.

Hope this helps you, G n' J

There are indeed a lot of gaps and inconsistencies in the central NHS system.

A recent survey by one of the UK blood cancer charities funding 1/3 of people living with a blood cancer have not receiving a shielding letter.

You do need to go back to your GP and/or your Haematologist to ensure you are given a clear classification for your circumstances.

All the best.

I had a letter from my GP saying that "This is to confirm the above named individual has underlying medical conditions which places her at higher risk if exposed to Covid 19" and lists all my health issues . The letter was accepted by my employer and I was furloughed. I was advised on a telephone conversation by a Macmillan nurse to register as a vulnerable person, which I did. The letter came following my registration and telling me that I was not vulnerable and I was deleted from the database.

I have no Haematologist at the moment, or I might have one but I don't know who is, because I moved recently from Hereford Hospital, Dr. Willoughby to Russel Hall Hospital and I only attended the initial appointment.I called the Haematologist nurse and she said that if I am only at aspirin I am not at risk! I was just about to be prescribed Ruxolitinb, but NHS does not offer it anymore for PV patients. I cannot take Hydroxiurea because of my leg ulcer, nor Anagrelide because of my higher heart beat. I keep my numbers down though natural remedies, however my white cells are slowly climbing at alarming rates. 

Sadly, I just fallen through the net!

I would advise you go back to your GP and if their classification of your condition is still High Risk and based on the MPNVoice.Org link that my friend  posted it looks like it is - I would think that your GP can contact the NHS system to inform them of the error.

Following  a telephone conversation on this subject with the GP he issued the letter stating I am at higher risk. I think I will leave it as it is, as the letter was accepted by my employer. NHS is too busy now and I doubt they will have time to deal with any individual patient above what is their general guide line. In case anything goes wrong I will step in and fight for my truth. I really think that I am at high risk and look after myself accordingly. However, it is deeply disturbing that NHS follows only the general guidelines .

Thank you for your help, much appreciated.

All the best and keep safe.