If you have CLL and are on watch and wait and not heard from NHS contact GP

[Fiona1122]

Today I contacted my GP, as I had heard nothing from NHS.. She told me I was in high risk group and has emailed me the letter I need for my employer to say that I need to self isolate for 12 weeks. I was also told that sometimes names are not always picked up by the data bases that put the NHS lists together. So please to reduce your stress make a call tor your GP.

Take care keep safe and well

[sun_flower]

I don't work but still think l my numbers are nothing to worry about. I rang the surjury this morning complete waste of time the receptionist said it's nothing to do with them and that there is a huge database for them to get through so whatever will be will be. Confusing.

[Fiona1122 in reply to sun_flower]

I am sorry to hear this, when I called this morning the receptionist at the practice knew nothing about what I was talking about and suggested I contact NHS 111. I then asked for call back from my doctor who knew what I wanted. I needed this letter to explain to my employer as I am a key worker, why I would be unable to work.

Even if having CLL and on watch and wait we are in a high risk group, even if you think your levels are not that high.

I also found the different UK cancer charities helpful and understanding. They are very well aware of the confusion and stress it is causing everyone. They are useful to talk to.

Take care

[devonrr in reply to sun_flower]

It’s good that people who work are getting letters as is the group who are actively on treatment or very high/poor blood numbers. But it seems there is a whole chunk of us who have heard nothing and this site may have contributed to anxiety when some have and some not. GPs are so busy and facing infection everyday.

I live in part of the UK that doesn’t stress. It’s our nature a lovely county.

The letter may get you supermarket delivery priority but they’ve put up their costs! The free food boxes look basic.

We are all at risk and need to be so careful. Those allowed freedom , enjoy your walk, try to supermarket shop monthly and use their smart shop system. Pay independents to deliver to your door.

Take your temperature daily.

Take care.

[AdrianUK in reply to devonrr]

Please understand that if anyone with CLL goes shopping they are putting themselves at risk. Don’t assume you are fine just because you didn’t get a letter.

[devonrr in reply to AdrianUK]

Got to shop if you live alone and can’t be eligible for supermarket deliveries. There is a large population of our community who have no choice.

Perhaps we are more resourceful? We all are taking care within our needs. A case of those who have or have not!

[AdrianUK in reply to devonrr]

There are volunteers springing up willing to help. The safest thing would be to ask for their help.

[Notmuchenergy]

I think we all know that we should stay in and not go out at all unless absolutely necessary

[Miggins60]

I called my GP this morning and reception just said it was not them, it was NHS England issuing the texts and letters. They just said wait and see if you get one. If I don’t get one after a while then probably ok. I said I had Leukaemia but they said GP practice can’t help 😳

[sun_flower in reply to Miggins60]

Same here but good news l have managed to get a food delivery from Iceland tomorrow. Take care

[Fiona1122 in reply to sun_flower]

Hi I am glad. Do check the Uk cancer charities out they have been very helpful and are able to give relevant advice and support

[Miggins60 in reply to sun_flower]

That’s good news. Keep safe

[NavyDavy]

Good advice, Fiona. Had the exact same experience. The system isn't infallible and sometimes needs a nudge!

[Gabs45]

First posting, having been diagnosed with CLL January 2018 now on W&W.

I have still been working as a Registered Nurse at 75 and with CLL!

Now ‘shielding’ and have younger daughter at home to deal with shopping, prescriptions etc. so do not need any assistance at the moment.

Have not had a letter either! but as said by others do know what to do.

But, need something to give to work to be able to claim sick pay!

Isolation note from NHS111 doesn’t cover 12 weeks!

Thought that I would be able to pass a copy of the letter, but as said have not received same!

Phoned GP surgery and have been informed by receptionist “they do not have anything to do with that”

Have now written a letter to GP re need for medical certificate confirming that I am not to work.

Watch this space.

[Fiona1122 in reply to Gabs45]

I do hope you get your letter soon. I also found the receptionist at my practice knew nothing of any letter needed. I therefore contacted my doctor and she gave me a letter to cover 12 weeks I also tried Advocacy@leukaemiacare as they were mentioned from one of the posts earlier. This organisation was very supportive and helpful. Take care keep safe and well. Thank you for the amazing work as a nurse you do.