Hi,
I've recently joined the group after coming across it during one of my many online searches. Amazed that I haven't seen the group before, but so glad that I am finally here. I've spent the last couple of weeks onsite reading and digesting, just to see how the group responds and reacts, etc. Hugely impressed by the wealth of knowledge, experience and valued opinion. The friendly and helpful environment that exists is also a huge positive.
Trying to be brief, my wife was diagnosed with CLL 'B' in 2009 whilst living in Spain. All tests and diagnosis were done by Spanish health authorities. (I can't praise them enough). From the very first blood test in 2009 we were told that my wife is ZAP70 neg, CD38 neg and 13q deleted. No test for IGHV or CD49 but those were early days. At least we had a more positive prognosis than most. It's been 10 years now and we are back in the UK and, thankfully, still on Watch and Wait. The blood count is still going in the wrong direction, waiting for it to hit those threshold levels, but at least we know where we are with it. She feels fine in herself, has some trouble shrugging off colds etc, but no other major problems with health, etc.
This post..... I would not normally post unless I have something useful to contribute, however, we have just had an experience relating to whether or not my wife is in the 'High Risk, Extremely Vulnerable' group concerning Covid 19 and registration with the UK Government's website. I notice some earlier 'posters' have had problems.
For those non-UK readers, registering with the UK Government website opens the door to extra help and resources for those who are unable to venture out to the shops or cannot accept help into the home. It's also an official acknowledgement that you are at risk.
The registration process requires that the applicant receives a letter from the UK National Health Service (NHS) notifying of their High Risk/Vulnerable status. The NHS arranged for letters to be sent out to all those who come into this category. The GPs/Doctors' surgeries were the main source of data used by the NHS. Unfortunately, many have not received the letter, despite being assured verbally that they are at risk.
Yesterday we contacted my wife's surgery to enquire as to her status. The reception staff, admittedly hard pressed, was unable or reluctant to connect us to a GP, stating that any advice should be obtained from the haematologist or consultant who was conducting the CLL reviews. We then sent an email to the surgery using the non-urgent (feedback) email address, just for them to 'have something in writing'.
On contacting the main hospital (with concerns that they are under even greater pressure), the best the staff there could do was to leave a message for the consultant who would, at some stage, contact us.
So we were left in limbo. Until a phone call just 30 minutes later from my wife's GP. She had intercepted the email sent to the non-urgent address at the surgery. She assured my wife that she was indeed in the High Risk/Vulnerable group, should be 'shielded', not venture outside the home, etc etc. She was very apologetic over the incident and confirmed that her notes were now 'flagged' appropriately and that both an email and the NHS letter would be sent out directly.
My wife is now registered on the UK Government website and the door is open for help and assistance when required. We are also reassured that CLL 'Watch and Wait' is recognised as a 'High Risk/Vulnerable' status.
The lesson here is that mistakes are happening, understandably perhaps, so perseverance will be essential when seeking information and advice.
Also, more importantly, be mindful of your own level of vulnerability in this crisis.
Apologies for the length of this first post!
Kind regards and very best wishes to all.
If you have CLL and are on watch and wait and not heard from NHS contact GP
International Prognostic Index Calculator 
Dave Barry: A journey into my colon - and yours 
Why not - I'm asking for advice (non-CLL question) Тhank you all, we have already made a decision with your help
