Confused

[GSBS1954]

I have CLL and currently on a Watch and Wait regime. With the latest changes from the PM muddying the waters somewhat, is it safe for me to venture out or do I have to continue self isolating, and for how long???

[AdrianUK]

Nothing changes for us as the moment. Sheilding for the extremely vulnerable continues until the end of June at the very earliest (this is likely to be extended!) and I read somewhere that we will be mentioned as a group in the detailed guidance for employers I believe it will be to make clear that we are not allowed to be employed outside our own home. For a summary of the science that is behind shielding see healthunlocked.com/cllsuppo...

[Ghounds in reply to AdrianUK]

Still not had a text or letter Adrian or any contact from GP or government despite registering. I feel forgotten and very let down especially as my GP well knows I'm on my own with other health problems and ironically used to ring every month before my cancer diagnosis! I honestly feel as though the authorities hope people like me will just die quietly as we are expensive and unproductive for the nation.

[AdrianUK in reply to Ghounds]

Have you tried calling your GP or nurse consultant? The blood cancer charities are advocating on our behalf with a document from the top CLL experts who make it clear we should all be shielded. I’m sure it’s not the case they want us to quietly pass on because if so they didn’t have to do the whole shielding thing at all. Though I can sure understand why it might feel that way. Not aware of any other country who’s tried to do what the Uk has tried to do for the specific group. Don’t give up. Keep pushing for that recognition. And call one of the patient charity lines ie CLLSA leukaemia Care it Blood Cancer UK (preciously Bloodwise).

[Ghounds in reply to AdrianUK]

Tried both six weeks ago. I'm just not bothered. I honestly wish I hadn't been diagnosed in the first place. The constant background fear and worry just aren't worth it. Being autistic with a history of being ignored and belittled by the medical profession I just don't have the confidence of ability to push anything and there's nobody to do it for me.

[AdrianUK in reply to Ghounds]

Call Bloodwise or Leukaemia Care. Either of them would advocate for you.

[annmcgowan]

The Prime Minister did not mention the shielded yesterday. Dominic Rabb did say that the shielded are indoors for their own good while others are restricted for the public good. He said this prior to Boris’s speech last night. So I would say Adrian is correct nothing changes for us yet.

Take care

Ann

[fapumpkin in reply to annmcgowan]

Going by my original NHS shielding letter, there has been an increase in shielding time by 2 weeks in the new advice.

[annmcgowan in reply to fapumpkin]

Hi not sure I understand this?

Ann

[Newdawn Administrator in reply to annmcgowan]

I think it may depend on when we received the original letter but in any case I intend to gauge this for myself because there’s no specific time that the risk disappears. I’m going to follow the science, the advice and the rates and maybe gradually start going out fully protected in a limited way.

However, if I crack before then I may throw caution to the wind because this is psychologically tough! 😳

Newdawn

[AdrianUK in reply to Newdawn]

I believe the documents issued today are clear that there will be a single date when the shielding advice will be lifted for everyone not a staggered date. That date is currently pencilled in for the end of June but is subject to review and like you I will be very shocked if it is not extended significantly.

You are dead right it’s tough psychologically for sure.

[Newdawn Administrator in reply to AdrianUK]

It maybe so Adrian though it’s clear some people received the letter a whole month or so after others. The end date will probably be the same however because there’s financial implications in continuing to support the shielders.

Newdawn

[ornstin in reply to Newdawn]

Having read a good chunk of the 50 page document It seems pretty clear that the 30 June will not be the end date, and the shielding end date will be extended until ??. I wouldn't be at all surprised if we are advised to shield for a year or more. I console myself with the thought that its advice, not an order.

The document says quite a lot about shielding.

Regards, Antony

[GSBS1954 in reply to ornstin]

I haven't seen this document but cannot see me ever keeping my sanity if I thought I would be locked down at home for that sort of timeframe.

[ornstin in reply to GSBS1954]

At the end of the day its your decision what to do. But may be prudent to take medical advice first (and, if appropriate, speak to those close to you to find their thoughts)

[fapumpkin in reply to annmcgowan]

I received my letter on 25 March, and it states that I should shield myself for 12 weeks from the date of the letter, which was dated the 21 March, so 12 weeks is the 13 June , but the updated England shielding advice on the government website mentions the end of June,= extra 2 weeks

[annmcgowan in reply to fapumpkin]

Thank you. I haven’t been on the website. Now I understand.

Ann

[robertsw]

Hi I waited for weeks for letter from nhs to confirm I was high risk and to stay in. This was after numerous calls to my surgery and going online to the gov.uk help line.

I have since had at least 5 txt messages from nhs saying how to keep safe etc. The last one though before the announcement on Sunday was I was to continue to stay in until the 30th June.

I am happy to do this as will feel safer. So many are eager to go out and everyone has different circumstances but I hope will take heed and be Alert!