Hi
Just wondering how many of you on watch and wait have received a letter? My partner has today been told he has to return to work or take unpaid leave unless he can provide the letter the NHS are meant to send. We have spent the morning being pushed from pillar to post and no one is helping. The GP surgery are saying they are not sending out these letters and the hospital said they aren’t either. Does anyone have any idea who we can contact?
Hi there, I'm also on watch and wait and contacted my GPs surgery by email asking if I would receive the Letter . A few days after I received a text saying I was high risk for Caronavirus from the GP and a couple of hours later I received a letter from the GP with "The Letter" attached to download which I also needed to give to my works. I don't understand why you're GPs has said it's nothing to do with them when they have all the information about high risk patients which they put forward for the letter. Maybe you could do the same as me and send an email to your GP who may act on it. Hope this helps!
Teresa
Hi my letter is on NHS headed paper.
It states clearly in paragraph 2, that the NHS has identified me, or the named persons I care for, as someone who is at risk of severe illness on catching corona virus and is required to remain indoors for 12 weeks starting on the date of receipt of the letter.
It also states under section 5 ‘support with daily living’ that the letter is evidence for employers to show I cannot work outside of the home’ and that a fit note is not required for work.
It is signed off by my GP surgery rather than my Haematologist or hospital where I am being treated for CLL, so clearly it is the GP’s responsibility where I live in the North East of England.
I would get back to your GP practice about this and if you have no joy call the nurse specialist or your Haematologist in the hospital where you receive treatment or go for monitoring on watch and wait.
It does not mention your carer under section 5 but as it is addressed to the person with CLL and their named carer I assume it applies to both in terms of evidence of a genuine need for them not to go to work. I would mention this when you speak to GP and/or CLL specialists.
I hope this information is of help to you?
Good luck and keep us updated.
I am sure there will be others on this site in the same position as you.
Stay safe
Ann
Hi Starburst,
Apologies, but I've only just seen your post. I also posted a few moments ago regarding the experience my wife and I have just had with a similar predicament. I'm not sure how to redirect you to my post so I will add it to this reply. Not sure if that is the right format as I am new on the site, hopefully an administrator will advise and amend etc.
Hi,
I've recently joined the group after coming across it during a search. 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 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 to have something in writing'.
On contacting the main hospital (concerned 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. 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 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 also know that CLL 'Watch and Wait' is recognised as a 'High Risk/Vulnerable' status.
The lesson here is that mistakes are happening, understandably, but perseverance will be essential when seeking information and advice.
Also, more importantly, be mindful of your level of vulnerability in this crisis.
Apologies for the length of this first post.
Kind regards and very best wishes to all.
Thank you for your message. We have now phoned 111 who were amazing. They spoke to the NHS who said speak to the GP! Eventually the GP surgery have accepted that they don’t know why the NHS letter wasn’t sent out and have issued the official letter along with a surgery letter apologising for his letter not being sent. They are also reviewing their patient lists to check for others who may have been missed. Now to battle for home shopping delivery!
That's great news, hopefully the message will get out. As for shopping? Best of luck with that one, any tips gratefully received lol!
Hi - i have been registered since 2011 - read most things but have never posted. I too have been having the exact same problem with my GP - spent yesterday going from pillar to post. GP said I was coded for cll and details passed to NHS- but have not received letter or text. Someone suggested that there are still thousands of people still waiting. If this is the case why are NHS or government sites not updating their information. My husband's work are also wanting a copy letter by 3 April-- otherwise back to work or no pay. Feel better to know not just us struggling with this.
My husband in same position work NHS letter by a certain date. Emailed GP and they wrote and emailed a letter confirming his condition and that he needs to 'sheild' . Employer have accepted this as evidence. Hope this helps.
My partner’s GP have emailed him the NHS letter, please call 111 and state you are having problems they were really good and sorted it for us.
Thank you to all - will try 111 - doctors not at all helpful - say nothing to do with them - they don't send the letter.
Have been on watch and wait since January 2017, but have not received any letter or text that puts me in the high risk category. Government guidance states those at risk are those who currently have specific cancers such as blood cancer (which CLL is), and then they clarify that by identifying those people who are at any stage of treatment.
Given that those of us on watch and wait are not on any treatment, then I translate that as not being in the high risk category. However, the Leukaemia Care website recommends that all CLL patients, irrespective of whether they're being treated or not, should self isolate, and not leave the home, even for exercise, for a minimum of 12 weeks. So clearly some conflicting views here.
I think that the best bet for people who are concerned and need some more concrete guidance, is to ring their care team. When diagnosed, I was provided with a list of contact details should I ever need to ask questions. That way, the team can provide discrete guidance based upon your specific condition, and any underlying health issues or co-morbities that you may have.
I do have the letter from the NHS and it is clearly written as from my GP. It says 'Yours sincerely (X) Surgery'. Very clear.
Shielding letter 23-12-2020
CEV letter v2.0, NI edition. 
Open letter from cancer charities to the public regarding vulnerable members of our communities in UK
Re government letter
