Shielding for ccl

Hi everyone I'm quite new on this group was only diagnosed 27 th feb 2020 with Cll. My question is a mate of mine hs been sent another letter from the NHS saying he needs to continue with the shielding until October. Does anyone else have a new letter only just received Monday. Thanks for your help in advance

[Floxxy]

A friend of mine received a letter a couple of weeks ago saying that she had to shield for a further 3 months

[Hidden in reply to Floxxy]

OK cool thanks for your reply

[annmcgowan]

Hi Sunshine I am in shielded list and I haven’t had a second letter. Does your friend have CLL or are they shielded for other health conditions?

Ann

[Hidden in reply to annmcgowan]

Hi Ann, they suffered a heart attack that's all. Some I'm not sure why.

[Cammie]

There is no new information on the government or nhs site re an extension to shielding. However it wouldn’t be unexpected in my opinion.

You probably need to clarify with your friend if the letter actually states a date etc . There have been some administrative errors in respect of these letters but it sounds If October is stated that we may be getting a new one.

[Hidden in reply to Cammie]

They have confirmed 31st October so having said that is 3months from the last letter. We may we be getting a further letter. Are you a cll

[Cammie in reply to Hidden]

Yes indeed!

Dealing with cll since 2000

[Hidden in reply to Cammie]

Wow that's a long time any treatment or symptoms yet

[Cammie in reply to Hidden]

Treatment with chlorambicil in 2005, with FCR in 2015 and still going strong!

[Peggy4 in reply to Hidden]

I see June 30th confirmed on the website but not October yet unless I’ve missed it.

Peggy

[annmcgowan]

Hi again can I ask which country you and your friend are in?

Ann

[Hidden in reply to annmcgowan]

I'm in the United Kingdom Buckinghamshire

[Hidden in reply to annmcgowan]

Where are you?

[annmcgowan]

Hi I as m in the U.K. Newcastle on Tyne.

Ann

[Hidden in reply to annmcgowan]

OK cool so I believe ours will be in the post soon

[annmcgowan]

I am not going to think about it until it comes and keep fingers crossed there is some element of change in it when it does arrive.

Ann

[bennevisplace]

I got the NHS letter a few days ago and it advised shielding for 12 weeks. There isn't a lot of consistency in this is there?

[Ghounds in reply to bennevisplace]

No. I got my first letter yesterday, had to get Leukaemia Care involved, my gp didn't think I was immune compromised! Then when she read the guidelines started to earnestly tell me I MUST NOT leave the house!! Bit late!

[Psmithuk in reply to Ghounds]

I had the letter from the GP after I rang them in April. He said he was 'putting me on the list'. I’ve no idea what list, have heard nothing from anyone since, and nothing from the only supermarket that delivers here.

Part of me is saying - don’t I matter?

I've had my Consultant phone consultation - she asked if I was staying home and. I said yes and that was it.

(Yes I know I’m pathetic!. It was thinking about staying home till the end of October that depressed me. Moral - don’t think about it).

Cx

PS Ghounds - it would be funny if it wasn’t so important.

[Ghounds in reply to Psmithuk]

I felt exactly the same Chris, as if nobody cared if I lived or died. I did actually manage to say that to my gp as we've always had a good relationship. I see her for five minutes a year! No consultant appointments as I was discharged.

I don't think you're pathetic at all. I have a dark sense of humour and can laugh at most things but even I have times of struggling with this. X

[Peggy4 in reply to Psmithuk]

Agree Chris. There seems to be a vast difference in the communications between us all. I’m happy to stay shielding (although admit to the occasional stroll in the quiet of the evening) but need official confirmation for work therefore the letter was a Godsend.

Peggy

[robertsw]

Hi my last letter a few weeks ago stated the 30th June. At first I didn’t receive any letter and had to keep ringing surgery and going on line to gov.uk

I eventually received numerous text messages and the letter. I for one hope I do receive the latest letter your friend has had for October as I really don’t relish the thought of going out yet.

[Trish67]

Hi Sunshine, I haven't had a second letter, although a friend (with a different cancer) has received one which told her to shield until the end of June. My (and my husband's) shielding letter 'runs out' on the 15 th of June. What we do then is anyone's guess!

[bennevisplace]

Having received the NHS shielding update a week ago, yesterday I had an email from Waitrose telling me I'm now a priority shopper. In this they are a good 6 weeks behind Tesco, but still ahead of Sainsbury who have yet to make contact (even though I have spent tens of thousands there) and can't be reached.

[Pinkdark2018]

So I’m only just seeing this thread of posts and wondered whether the letter was from local nhs or national. I have not received an extension though had to chase up the original. My 12 weeks is up on 15th June but the government quietly extended it until the end of June. No mention of October has ever been made, to my knowledge, although it has been said the shielding could be extended. It seems bizarre that we should have to stay shielded completely whilst the rest of the population is considering a staycation!!!

[fapumpkin in reply to Pinkdark2018]

As a shielder who lives in the far west of Cornwall, I am incredibly concerned about "staycation". There is a 'nightingale' hospital being constructed near Exeter and I am wondering if this is to try and cater for the influx of holiday makers? Cornwall has one itu unit and a large elderly population, so a huge influx will easily overwhelm the hospital and unfortunately, going by the behaviour of "day-trippers" in this last week in Cornwall, I am very concerned as to the issues about how people literally leave all their worries at home when visiting. Leaving large amounts of rubbish behind, queueing for 40 minutes to use a disabled toilet, camping in lay-bys and parking dangerously do not show any of the referred to "common sense". Parking is a huge issue in many holiday destinations in the UK and I imagine to accommodate some level of social distancing on trains, more people will be driving to their UK holiday's.

Hopefully some level of new ideas and in put will go into improving dwellers lives in large urban environments so that a better quality of life can be had for all.

[Cammie in reply to Pinkdark2018]

As far as I can see there is currently no change in guidance.

Shielding May indeed need to continue for the very high at risk.

However, it’s wait and see.

Go with the flow to protect ourselves .

Perhaps a vaccine will be forthcoming?

[bennevisplace in reply to Cammie]

For many of us the shielding guidance has not changed, but on 7 May NHS England sent a letter to cancer care teams across the country telling them to make sure that all high-risk patients had received the guidance.

Usefully for those affected, the letter confirmed leukaemia patients on watch and wait as high-risk.

This letter was a wake-up call to health authorities and practitioners who'd previously given no advice or wrong advice to patients who should have been shielding. Hence (I think) the recent spate of letters from health trusts to patients. If the advice on how long shielding should continue seems arbitrary, it is - basically nobody knows.