I am 2 years into W&W and still have no symptoms. I was advised in January that it would probably be "many years" before treatment was necessary. The consultant only indicated that I should have my annual flu jab plus one for pneumonia but apart from that just advised me to carry on as normal and to come back in a year. I was therefore knocked sideways when I got a text on day1 of the lock down saying that I was on the vulnerable list. On day 3 I got the letter and have had various texts and reminder letters since. My question is whether everyone with CLL is on the list and should we be if we are only at the relative start of the CLL journey ? I know of one person on this forum with CLL who has been taken off the list. I am confused as to whether I should be on the list or not. It's nice to get reserved supermarket delivery slots but raises issues of what happens next. Very interested to know what others experience is. Thanks.
Is everyone with CLL on the UK Government Vuln... - CLL Support
Is everyone with CLL on the UK Government Vulnerable/Shielding List ?
W&W for 5 years. I’m on the vulnerable list and although my GP says I’m fine to work (front line), the consultant said no . Somewhere on this site there was an excellent webinar from Prof Fegan ( The one on the CLL ‘welcome to the club’). explaining it. I’m afraid it’s beyond me as to who posted it but maybe someone else could help? Possibly HAIRBEAR_UK ?
I have registered, but have never been put on a high risk supermarket list..... I have received two government food parcels,..... for which I'm very grateful..... I did manage to get one 'normal' delivery slot with Tesco.... I have now given up on supermarket home delivery's, and now I go out to get my own supply's..... I need the exercise...
I think you have to also be registered with the supermarket as one of their customers. Before the 'list' came out, I had registered with 5 of them in my hunt for a delivery slot, and now I'm spoilt for choice. If you're not already registered with Tesco online, try it. Might make a difference.
Tesco sent me an email informing me that I was on their list..... I have looked on there many times, but there has never been a vacant slot..... I wear a mask and go to the supermarket.... I don't mind...
I was advised by a delivery driver that Tesco update their slots at midnight. You have to join an online queue, but if you do that about five to midnight, you only have to wait for a little over five minutes or so. I haven't had any problems booking slots by doing this. Granted, they're usually about three weeks ahead, but once you catch up with them, and have booked your next slots ahead as well, it works. Good luck!
Thank you.
Hi, I am also W and W, dx Sept 17. Have a blood test every 6 months at GP. Not had any contact from anyone despite my GP knowing I'm alone with other health conditions affecting daily life. I'm feeling pretty let down by the system if I'm honest although I appreciate they're very overstretched. Ironically I used to get a monthly phone call from the doctor before I was dx with cancer......
I live in the US so I’m not an expert on the U.K. vulnerable list. However, from what I have read all CLL patients in the U.K. should be on the vulnerable list. Someone please correct me if I am wrong. While you may classified as vulnerable in the U.K. I think there are differences among CLL patients as to how they would respond to Covid 19. For example, someone recently diagnosed with CLL and with favorable markets and no other health issues logically is at lower risk than a patient who has been treated for CLL and has other health issues. However, tiering risk among a population of CLL patients isn’t easy to do even on a stand-alone basis. Compounding this problem is the fact that so little is known about Covid 19.
Bottom line, if you can stay at home and shield yourself I would do it.
Best
Mark
Ha! I’ve fought for my husband to be on the list as we are shielding and wanted to get supermarket slots for delivery. My husband has had CLL For 6 years. To this day, despite copious calls to different people confirming he must shield , he has not received anything. 🤦♀️
I finally got the letter after speaking to my GP (I’m in Wales). He sent me the same letter the government were sending out, and said he was adding me to the NHS list.
I still have heard nothing from Tesco, who are the only supermarket delivering here, but I did manage to get a click and collect slot yesterday which my daughter kindly collected for me.
Not possible unless you have a handy daughter with access to a car living 12 miles away, I realise!
I'm the one taken off the list & pretty much your description of where you are with this disease covers me, except I've been on W&W for 5 years.
Incredible. Still the authorities haven't got to grips with this. If you have a blood cancer, irrespective of what stage, you come under the extremely vulnerable category.
Look at it this way. Try and get a doctor to state, in writing, that you have no more chance of being hospitalised through Covid than someone without CLL, They won't do it and when, sad to say, the GP has been put into that position they will issue the NHS letter. This has happened with my wife, with CLL 10 years W & W, also my brother with rheumatoid arthritis, my 90 yr old father with heart disease and many other people in this group. The thing most have in common is that they were 'fobbed off' by probably well meaning receptionists. That doesn't help you. Get it from the GP, in writing, that you are NOT vulnerable to Covid. It won't happen.
Personally:
We have the NHS letter.
We are registered on Gov.uk as extremely vulnerable.
We receive priority online slots from Asda and Tesco.
We receive the Governments free food parcel.
We have our prescriptions delivered to the home.
Extract from NHS letter:
"The NHS has identified you, or the named person you care for, as someone at risk of severe illness if you catch Coronavirus (also known as Covid 19). This is because you have an underlying disease or health condition that means if you catch the virus, you are more likely to be admitted to hospital than others".
Accept nothing less. This is to prevent you from ending up on a ventilator in an ICU.
Keep safe,
Davy.
It was the GP that wrote to me to tell me I'd been taken off the shielded list on review.
That's disgraceful, Alex. Either that or your GP has remarkable insight into CLL.
My wife received the same letter from the GP but it said they had been advised by NHS England that she was not classed as vulnerable. The letter was dated the same as the new advice from CLL Support (see “Silverbirchuk” link below). I’ve passed this on to our GP - we’re used to watch and wait!!
Thanks for your reply. Mine seemed to say "on review" & came via a text from the GP.
As I've said elsewhere I'm not overly concerned, because I believe it leaves me free to go on walks with my wife & I'd rather the help that's available goes to those that really need it.
Thankfully we're coping pretty well & if we need help we have children & a GChild more than happy to give it & I'm sure there are many that aren't so fortunate.
Take care & stay safe.
I received this in my inbox on Thursday. A letter containing new advice and clarification on shielding from UK CLL support which can be printed out and used
Well done, Silverbirch, great link.👍
I haven't been out since receiving that email, though prior to that I'd been having a daily walk. It felt like a rap on the knuckles! I live in a relatively quiet area, but you can't account for careless people. Working in the front garden yesterday I was approached by a driveway paving salesman who didn't seem to know the country is in lockdown. That did make me feel vulnerable.
Maybe a hosepipe in the front garden to repel boarders! 💀🤺
Know how you feel though, silverbirch. We had a similar experience. A family coming toward us on a country lane, split up, some on our side and the rest on the opposite side!! Even if we'd walked down the middle of the lane we still would have been arm's length away! So that was it for us, no more one hour daily exercise.🙁
We've had that happen too. You just can't predict how people will behave, although the majority do keep good distance.
I like the hosepipe idea!
My brother is also watch and wait. He has had a letter from the GP telling him that he is vulnerable but also that he is not on the NHS vulnerable list and therefore will not necessarily receive some of the prioritisation that’s he would have done had he been on the list. I’ve registered him on the government website, but all he’s had is an email from Iceland recognising that he is medically vulnerable. Nothing from any other supermarkets.
Is he registered online with other supermarkets? He won't hear from them unless he is.
No, I agree that’s a fundamental problem. He doesn’t use the Internet for shopping.
If he wants to hear from other supermarkets, he must register with them. They can't break GDPR rules, so he must be proactive. They can't be blamed for not contacting him.
That isn’t true. He did get an email from Iceland despite not being registered with them as a shopper. This is because he provided his email address on the government website when registering as vulnerable. So it is possible for supermarkets to contact people Who are not already customers, but most have chosen not to. Also, Iceland said that he can get someone else to use the email to get a priority slot on his behalf.
Some of the most vulnerable in society do not use the Internet that much. I think it’s easy for people on this site, who obviously do use the Internet, to forget that.
Just to be clear, the point I’m making is that because of other problems he relies on me to do things over the Internet for him. The government needs to cater for everyone in need, not just those who are Internet savvy.
My information is from Tesco, who told me they cross-reference the government list with their customer list, and that's how they allocate access to priority slots. Interestingly, I was also contacted by the other four supermarkets I registered with before when delivery slot-hunting. Nobody else. Such as Iceland. Anyway, was trying to be helpful. Not looking for an argument.
Hi, if you have CLL then your immune system is compromised and according to the CLL Forum UK (a grouping of expert clinicians, scientists and researchers with a special interest in CLL) you should be Shielding and you should be on the Government listing of those who are extremely vulnerable to Covid19. CLL Support (cllsupport.org.uk) is working with the CLL Forum alongside other blood cancer charities to change the government listing of the extremely vulnerable to include CLL patients at whatever stage of their condition. Use the CLL Support letter to inform your discussions with GPs or your Haematology clinicians. It has been posted on here or you can access it at cllsupport.org.uk
Hi,
was diagnosed june last year,i have had sevral vaccinations all pretty standard for someone with compromised immune system,yes on vunrable list
I received The Letter yesterday - from my doctors surgery. This would be three weeks after they assured me it was nothing to do with them. We have now been “shielding” for five weeks. However, I have registered on the database and (now) have been receiving deliveries from Sainsbury’s and (on the basis of my husband’s age which is easy to prove) prior to that from Iceland. On Thursday I received a phone call from a government body asking if we needed a food parcel or other support.
Stay at home and keep as well as you can!
I am 61, CLL diagnosis 6 years ago, W&W, 6 mthly FBC at GP's, also diabetes, AF, high BP (all controlled by meds), received text first about being on The List, on first day of the lockdown, then letter a couple of days later. My guess is that the 12 weeks will be extended, and we need to be prepared to stay put until we have (an appropriate) vaccine.
You are on the vulnerable list because you have blood cancer. Not having treatment yet doesn’t rule you out.
Take care
Netty
Thanks for the responses. Very useful to get input from others. Does seem that the shielding list is patchy in coverage but to be fair , in our area, everything has worked very well. Looks like it's going to be a very long haul ! Stay safe.
My wife on W and W since January 2019 has not received a letter despite her GP saying she “would be receiving a letter”. She is self isolating aged 76 and I’m (aged 76) doing the shopping!
Hi there, Reading these posts, there seems to be a disparity between GP’s when it comes to knowledge of CLL. I suppose that they cannot be blamed for not being specialists in Haematology, but it does get a bit frustrating when you are having to argue with them to get on the list, or seek guidance on shielding so that you can tell your employer that you have to stay home for the foreseeable future.
I am 3 years post treatment (FCR) and, fortunately, still in remission with normal blood chemistry (albeit a recent MRD positive of 0.078%).
When I didn’t receive a letter or text from the NHS I contacted my surgery to seek clarity. My GP said that I had normal bloods so should not be at risk. ‘So, does that mean that my white cells are all behaving normally ?’ I asked. ‘Ah, I don’t know enough about Haematology to answer that’.
A quick call to my consultant (Exeter Hospital Haematology is amazingly approachable- especially when on a trial) and he confirmed that I should be shielding.
Since then I have read up on my FCR regimen and that post by CLL support and I am glad that I followed shielding guidelines from the start of the lockdown - albeit on Statutory Sick Pay as my employer has unhelpfully refused to Furlough me.
Hope you all stay well and safe.
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