I know you are all fed up of seeing posts like this but I desperately need some clarification.
My husband was diagnosed with CLL in November. On W&W. He is self shielding as advised due to having a blood cancer. All seemed easy to understand so far.
He hasn't yet had a letter or text from NHS England and needs it for his employer. Called GP who said NHS England were sending letters so nothing to do with them. Called specialist nurse and they are saying he isn't high risk so won't get a letter!
He is so stressed. We've been petrified at home as I work in a hospital. We've seen a lot of people on other groups say they've had letters and not on treatment, only W&W.
He is also type 1 diabetic.
We feel very let down by the hospital. Please can anyone help?
Thank you
Nicola
Written by
Lillyloo12
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I’m sorry to hear this Lillyloo. My understanding is GP’s did collate and recommend their most vulnerable groups. Clearly your GP didn’t include him. Quite wrongly in my view. I think he needs to ask to speak to his Consultant and ask for clarification as to why he’s been excluded from this protection despite others on W&W being on the shielding list.
I don't understand how some can be on W&W and get letters and others don't as they came out too quickly for the levels and records to be checked. It's so confusing.
I don’t think the qualifying criteria has been established clearly Lillyloo and the inclusion seems to have been dependent on clinical judgment by GP’s and Consultants. I can fully appreciate how frustrating this rather inconsistent system must be for you.
Hi. We spoke to my husbands oncologist . He is watch and wait sll/cll . She said that unless they have tested and know the immunoglobulins levels we should self isolate. She also recommended that the whole family self isolate for the full 12 weeks if possible. As far as I know this advice hasn’t changed but there is just now the even higher level of risk which doesn’t at present include watch and wait so we are still following the original high risk advice. Hope that helps.
Newdawn, just wanted to let you know I did receive my routine IVIG. They reassured me I would be getting it just as long as they had it to give....they said they couldn’t be sure just where they would send me ....might even be under a palm tree!
I shall be I. Self isolation until April 21st .......my next IVIG. Life is good and God is Great and I am so very fortunate. I am praying that you and anyone else that needs IVIG is able to get it!!! Be safe!
My husband spoke to his GP today and apparently the notes didn't have the codes entered for his CLL on the IT system and a couple of other illnesses. She typed them in (more than one) and said she would speak about it at the next GP practice staff meeting. So if you haven't had a letter I would ask to speak to a doctor to check that the correct codes for your illness are entered on the right data base.
He is on watch and wait and has diabetes and a lung condition. His GP said that it was proving difficult for the correct information to be pulled from the different systems, so I think it is vital to make sure that they are at least correctly entered by the GPs.
Sorry to hear to hear this- I too haven't received a letter but was told I was in the Vunerable group. I would treat as that, as to a letter for the Employee they have to be more flexible do they not think Dr's have a lot going on at the moment.
Yesterday I read an article about risk: diabetes elevates risk. There are multiple articles on this topic. This should put him at high risk. Not sure if this helps at all since it seems like the issue is communicating with whomever at NHS provides these letters.
I'm sorry for your stress. I'm in the US so I have no helpful input but I want to say that I think your question is just what the site is here for. No need to apologize.
I think you did the right thing to email bloodwise. They will get back to you I am certain about that. (They responded me too and I'm in the Netherlands)
I shared the info I got from Bloodwise with my employer because in my country information is even more scarce. (But even without that, they would have taken my word for it that I need to stay home)
I hope all works out well for you and your husband.
Hi if you go on blood wise website it says on their video link those with blood cancer to self isolate for 12 weeks , even if not having treatment. Hope that helps Stay safe and well
Hi grizzlebear , hope your well when you said your care nurse do you mean your nurse who deals with your cll for example haematology nurse who knows your case
You have a haematological malignancy that is still considered incurable. Chemo treatment generally further suppresses the immune system from what it was in your first Watch and Wait. A lung X-ray can show damage from previous infections and that they are clear and blood tests only partly inform about your degree of immune compromise, so I would not see this as a comprehensive measure of your immune system health.
It's good to hear an encouraging report about your health, but given healthy young people without risk factors are dying from COVID-19 infections, I would still consider that you need take more care than someone else your age without a blood cancer and subsequent treatment that both suppress the immune system.
Honestly I think that this is about computer error or perhaps in some cases a clinician intervening. It is abundantly clear that the intent from the centre was for ALL patients with blood cancer to be included. For me I would copy that central statement available on the web and copy a diagnosis letter and send that to my employer in your situation. But you could also still talk to a GP or your consultant about the situation (not just a nurse). Maybe ask your consultant to write you a letter to state that you are not at increased risk and can continue working. They probably won't want to do that. Most employers are quite pragmatic and risk adverse so I think a diagnosis letter plus the statement on line should hopefully be sufficient. This should not be a clinical judgment but a blanket acceptance that there is an increased tho unknown risk for all of us.
My hubby is 80 in May, he is on W&W too and has not received a letter which makes it difficult for me to 'enforce' his isolation and it is making him grumpy.......... oh the joys!
Yesterday I was speaking to a friend who is a GP and mentioned that I haven’t received a letter or a text. This feeds into my delusion that I don’t really have CLL and it’s all a mistake. She said the letters went out centrally from NHS England and GP’s are then expected to check their list of patients to make sure that everyone did receive a letter. Of course they are rushed off their feet so understandably there may be a delay. Contacting your surgery should produce a letter.
Just to reassure, despite my hopeful delusion, we have gone into isolation for 12 weeks as a family, closed my business that me, my husband and my son all work in, so we’re desperately hoping for help for the self employed to come through.
Also, yesterday we found out that my uncle has just died from Covid. He was already unwell with heart disease but got sick Monday and died Tuesday night. It’s awful. My aunt is trapped on her own in their house unable to go to her daughters.
Lillyloo, the advice is for whole families to self isolate if any one member is vulnerable. You need to stop working and hole up with your husband. I was forced to tell my children about my condition when my plan had been to wait until my daughter had finished school. Now she has no school. This is the new reality.
I know exactly how you both feel. I have recently been diagnosed with nhl & I’m on watch & wait. I phoned my consultant whom I’ve seen once, she’s not working, so spoke with a locum. He said I can work at the front line (I’m an nhs employee working with patients in the community) as long as I wear gloves apron & a mask). I’m currently on a/l.
I also have COPD that he wouldn’t have taken into account so I think the best thing is for myself and possibly your husband is to phone the GP who will have an overview of a patients health.
I haven’t had an nhs England letter or txt yet either. It’s really difficult
because NHS England suggest we are high risk people with blood cancers.
Hoping to reassure you you are not alone & that the GP May be the best port of call.
Hi Lillyloo, I'm receiving Ibrutinib and have done over the last two years, but have not received a letter. I await the post each day to see if there are any pertinent instructions from the said letter. In good health currently but could do without the anxiety of this said letter.
I am also on watch and wait. I was diagnosed with CLL two years ago. I have not received a letter or text yet. I phoned Blood Wise and they were very helpful and pointed out to me as I have cancer of the blood even though not having treatment I am in the at risk according to the guidelines. I need confirmation of this, as I need to let my employer know. I have now been in isolation since last Tuesday as I have a cold , but have said to my employer I would give them an update. I was due to have my check up at the hospital this Wednesday but it was cancelled. This appointment has been moved now to May, but there is no guarantee this will take place.
I also checked on my GP practice website and it says under NHS guidelines blood cancer even if not receiving any treatment. NHS website seems to have changed this now and just states any stage of treatment It is very confusing and stressful . So I have decided if I have not received any communication I will speak to my Doctor to see what is the correct advice.
I hope all of us are given the advice we all need and stay healthy.
My husband has not had a letter yet either, but we know he has CLL and so we are “shielding “ for 12 weeks ( although I think that might end up being longer) anyway because it is the only thing we are able to do in these difficult, different times.
He is 62, had FCR 5 years ago and had been very well. The consultant was talking about treatment again “soon” due purely to blood numbers... I’m guessing that won’t be soon now.
We are very fortunate in that we are retired, so at least we don’t have to worry about that. I’m finding it difficult asking for help with food shopping but if that’s the worst thing...
I wish your husband (and you!)well and I’m sure you’ll do all the right things, regardless of whether or not he gets a letter.
For what it's worth, I'm on W&W as well, and also haven't received a letter. Letter coverage for W&W patients seems to be highly inconsistent. I know from other threads that some W&W patients have received the NHS letters - others obviously haven't.
Hi there, my GP is on the ball with everything and think its the communication to be fair, had a text Tuesday followed by a telephone call Wednesday from the surgery confirming that we were isolating and had everything covered food etc.
Im on Ibruvika and husband is a diabetic.
Wish you well with getting clarity for your husband and stay safe.
Think we have to make the important decision to isolate to beat the virus👍
I'm in the US and no one is getting a letter(to my knowledge). I've been on W&W for 9 years, dx'd 2011 and have numbers go up and down but hematology doctor says to wait. So maybe I just have not gotten one. I think that we're all just left to figure it out for ourselves! My husband keeps going off to work (even though they laid off 6 people, they kept him) and when he gets home from work I'm petrified that he's bringing germs into the house with him.
A letter from one of my specialists would be great to show him why he shouldn't be working.
Hi, posted earlier but do t know if it’s registered... Macmillan are amazing. I signed up as a member online and they sent an email out last week asking if I needed any advice or support. It’s great alongside the friends, support and advice from this precious CLL group. X
I am in the USA so don't know a lot about English system. Yes your husband has a blood cancer and specially cancer of the immune system, the white blood cells. Your husband has not been on W&W long enough to develop a cancer spread rate, but has been 5 months. I had to start treatment after only 14 months of W&W so you should have been in high risk group. Blessings.
I'm 3 years in remission after fcr, presumed vulnerable. Husband is, a key worker so just wanted clarification from hospital as to what I should be doing so I rang my consultants secretary to explain. She checked with 'somebody' who then said it was fine for home to go to work and I wasn't vulnerable!!!!!
I've rung cllsa/ leukaemia care and my specialist nurse and left messages.
Cllsa say we are extremely vulnerable...
Awaiting answers to your post with bated breath....
Hi Nicola, your pain and anxiety is palpable and so understandable.
Many may have fallen through the cracks in the beginning letters/texts, may follow soon if you have not had yours yet, but it is possible to be missed by the system. Hubby is doing the right thing following shielding guidelines and does not have to have received NHS Coronavirus Service letters or texts to register with the support system,
We have spoken to NHSE who have confirmed all CLL patients should be isolating. Also the CLL clinical community are updating the patient guidance since shielding went live to remove uncertainties. This will be available imminently and could help.
Good advice from Newdawn contact your consultant for a letter or email in the meantime please also email advocacy@leukaemiacare.org.uk the team may be able to help you progress this.
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