CLL and COVID Sheilding

[Moonboots]

My husband has CLL, daignosed 5 years ago. On watchful waiting and not under treatment. He has been shielding through Covid but when checking with his GP, he was told he was not in the vulnerable category. He also has a myriad of heart problems. Anyone else had this experience as we are confused and worried about how to proceed once the lock down restrictions are eased. He hasn't even been into a shop since March and now he is being advised he can with social distancing measures only? Appreciate any advice

[alexmcg48]

As I've said before I was originally placed on the shielding list & then taken off it 3 weeks later with no really reason given other than "on review". I'm somewhat like your husband in that I've been on W&W for 5.5 years & I've assumed because I'm not on treatment they decided I wasn't sufficiently at risk to be shielded.

I don't have your husbands heart problems though (as far as I know that is) & considering heart issues seems to be one of the markers that lead to Covid 19 being serious if you catch it I'd be tempted to try & get a 2nd opinion from your haematologist for instance.

I do know of people who weren't on the original shielding list & have now been put on it & they have tended to be those with breathing problems such as severe asthma & the like.

Take care & stay safe.

[ygtgo]

No need to shield, that's the advice we are getting here in Scotland.

I've just received a letter from my haematologist.

My health board are currently following the Scottish Government guidelines for patients who have 'stable' CLL.

The view taken is as far as I can see, based on visits to hospitals and GP's.

My day to day experience of living with untreated CLL is more complex.

GPs are only visited when absolutely necessary.

My long experience with CLL allows me to be able to take the first steps when I have for instance, an infection.

If self medication is unsuccessful then and only then do we make an appointment to see a GP.

What is missing from their judgement of untreated CLL patients is the reality of day to day living with the symptoms.

ygtgo

[Tinkataz in reply to ygtgo]

Hi, we had a few chats about this subject a wee while ago after the Radio4 piece, I live in Edinburgh. Well , surprise surprise, after having my bloods taken, which were thankfully, pretty good, my GP contacted my Haematologist to ask for advice on putting me onto the Extremely Venerable List, and she said “no need”. I told my GP I was very concerned about returning to work because I work for a huge supermarket, and for the round trip, I need to get 4 buses. It’s going on public transport that has me the most concerned! She said to ask to be put in contact with the companies Occupational Health to see if they can alter my duties. I’ve emailed my MSP, and guess what? No reply! I’ll try again, then I’m going to contact my MP, Ian Murray, but I won’t be holding my breath. Anyway, I just wanted to update you because you gave me loads of good advice and are in a similar situation. I’m sure non of this is a surprise to you, but I will keep you updated IF anything happens. Take care

[annmcgowan]

Hi your husbands GP is incorrect. All CLL patients in treatment or watch and wait should be shielded. Has he received a shielding letter? I received 2 and texts. The first came from my GO and the second from my specialist CLL nurse.

If not I would contact you husbands specialist nurse or doctor to get one and to get them to inform his GP of your husbands vulnerability.

Stay safe & well

Ann

[Shedman in reply to annmcgowan]

That fits with the information from LeukaemiaCare.org charity..

leukaemiacare.org.uk/suppor...

Some haematologists would seem to be confused (this appears to be the Scottish CLL experience) about watch and wait patients..

Yes, patients are vulnerable during treatment and it is deemed for 5 yrs after.. but patients can be in very precarious health prior to treatment, perhaps for several years prior.. including a trend toward neutropenia..

[opal11uk]

My husband is on W&W too and he has received two letters of shielding as blood cancer is on the list. If you visit the Govt.org link you can register him yourself, you will also see the vulnerable list at the same time. If you are needing help to get supermarket slots that is how you register, tick the box where it asks about availability to obtain food etc., that shows you need help. Good luck