Watch and Wait - Covid19

[diddiC]

I was diagnosed 3 years ago and am on watch and wait, last week my GP's receptionist said that I am not at high risk from Covid19 and should read PHE guidance properly which was why I didn't get a letter from the NHS. I said the guidance said any stage of treatment but apparently I am wrong. Can anyone advise me on this please?

[nanasu]

I`m on W&W, got my letter and am high risk.

Can I ask if you registered on the government web site as being vulnerable? and also have you been seen by a haematologist at all?

I was referred straight away by my doctor.

Hope you get the answers you want. Look after yourself and do what you feel is best for you.

[diddiC in reply to nanasu]

Thank you

I saw a haematologist when I was first diagnosed and then referred back to GP, I have blood tests every 6 months. I did register on the government website but did not hear anything.

I have spoken with work today and luckily they are leaving it to me to return when ready

[Newdawn Administrator]

You’re not wrong diddi but some clinicians have made their own judgement and interpretations based on (hopefully), clinical judgement. However, this is a statement from Leukaemia Care after the Blood Cancer charities made representations on this confusion;

* We are lobbying National Health England and the equivalent organisations in the devolved governments to recognise all CLL patients to be in the extremely vulnerable category. We recently received a letter from Professor Peter Johnson, National Clinical Director for Cancer for NHS England. He clarified that the definition of patients diagnosed with blood cancer, now includes those on ‘watch and wait’. ‘This means before, during or after treatment, including those being managed expectantly’.

Hope that helps though the shielding arrangements are ending on the 1st Aug unless the Covid situation deteriorates.

Regards,

Newdawn

[diddiC in reply to Newdawn]

Thank you for your reply, the receptionist had made me feel I had been shielding for nothing for the last few months but I have realised she is wrong.

Hopefully shielding will be over soon

[cajunjeff]

I can’t speak to the criteria used to establish “high risk” in the U.K. My assumption is that officially being high risk confers certain benefits provided by your NHS.

In any criteria there are cut offs that are arbitrary to some extent. Being over 65 might be a cut off for certain benefits even though there might be a very deserving 64 yr old more needing of benefits than some 70 year olds.

I am more responding to the question of whether someone in any stage of Cll should be considered high risk with covid. I think that answer is easily yes. We have an immune disorder and by the time we treat we may have suffered serious immune depletion. We don’t treat earlier because as of now there is no proof treating early improves our survival chances.

No one knows exactly how much more at risk we are, like for those without Cll it varies wildly. Many of us should do fine with covid. Benefits are one thing. But don’t drop your covid guard because some receptionist said you are not high risk. I hope you get the benefits you are entitled to have.

[diddiC in reply to cajunjeff]

Thank you for your reply, I don't need benefits as I am one of the lucky ones that could work from home, it was just she made me feel I had been wasting my time.

[Newdawn Administrator in reply to cajunjeff]

There were no additional benefits as such attached to being on the shielding list Jeff and 90,000 of the shielders are children. The advantage for those employed was a formal Governmental recognition of the need to ‘shield’ and therefore be on the furlough list if they couldn’t work from home. The Govt have supplied food boxes to those unable to get out for groceries and the supermarkets have worked in partnership offering priority deliveries (allegedly).

The initial list for the clinically vulnerable seemed very straightforward and amounted to 1.5 million of which CLL’ers should have been included. Unfortunately it became messy and many other clinical groups and individuals fought for inclusion pushing the numbers to 2.8 million. Justifiably so for some. A logistical nightmare for an unprecedented event 😳

Regards,

Newdawn

[teakbank12]

I'd be reporting this person to the practice manager, the health authority and more!

I think we all experience that receptionist who has had five minutes training, whereas I believe it's five years for GP!

Dave

[diddiC in reply to teakbank12]

I am thinking of reporting it as I was sure I was right to shield but she made me doubt myself.