Covid19 and cll

Hi all, I thought it would be good to post this information that was posted in another blood cancer group that has been put out by Lymphoma Action.

The government guidance refers to ‘Patients at any stage of treatment’. This includes people before, during and after treatment.

• Before treatment: people who are on active monitoring (watch and wait) for low-grade lymphoma.
• During treatment: people who are currently having treatment for lymphoma. (Patients on treatment should follow the standard neutropenic sepsis pathways and telephone for clinical advice as stated by chemotherapy unit prior to commencing treatment.)
• After treatment: people who are within 2 years of finishing treatment, or longer if ongoing recurrent infections.

hope this helps, but as we always say check with your team, it does still seem to be a confusing picture when you read posts on various platforms of people who have received the letter and those who have not. As of Monday people can contact their GP and query if they are highly vulnerable or not.

I also haven't received anything but I have seen on other forums that people on watch and wait have. I dont know if it's just because post is delayed? Seems some have received texts quite early but I am assuming they have come from.GPs who know that person well and that they are extremely high risk. It's all quite frustrating to not know one way or another. 

The NHS advises that from tomorrow, Monday, anyone that is NOT on the list of Vulnerable Patients and feel that they should be should contact their local GP..

Their local GP has been involved in producing these NHS letters, and my NHS letter has his name at the bottom, so clearly he was involved.

Suggest contacting your GP and discuss with them.

Stay safe

Dick

Hi Dick, just checked my letter and it comes direct from the Scottish Government and signed by the Scottish Chef Medical Officer using my CHI (patient) number.

All our Medical Records in Scotland are on a central system so they may well have used a search facility to do a broad catchment of the population of 5.5 million!!!!!

My GP said on Wednesday that they were going to send out their own letters but just did not have the time so was phoning round.

I will ask her tomorrow if she had any input in the people on the list.

It then appears that you are doing things differently in Scotland.

My letter is marked NHS, gives my NHS number, and is signed Yours Sincerely Dr N...** with his telephone number below.

So in England it appears to be slightly different, but I would still suggest to anyone NOT on the list contact their GP, who I expect can arrange this, if  they think appropriate.

Catching every one at risk is obviously a massive task, with a reputed 1.5 million people who could be involved. I am sure there will always be a few who get missed.

Dick

Well, I thank you all for your comments and input! I haven't heard anything as yet, but as I have a telephone appt with my gp tomorrow, I'll clarify with him then... Although having a stir crazy husband, and an 18 month old Jack Russel at home, I'm not sure if I'll be saner at work! Virtual hugs to you all... Stay safe

Sal 

Please come back tomorrow to update us on what your GP says. I still haven't had a letter so will contact them tomorrow. Don't expect to get a consultation for a day or two though. 

So the latest word from my team is I am still to 'behave myself' but no social distancing in the house and my wife should only go out where very necessary to pick up Click and Collect and we have prescriptions organised to be delivered....... if all fails our daughter will collect and deliver our Click and Collect to the door and my wife is working from home anyway so door has been locked for 2 days

Still ok to walk in the forest at the back of our house if we want, but only on calm days (in Scotland!!)..... give people a very wide berth put on a mask/scarf over my face and gloves and wash hands immediately when we get back in and hang jackets etc up out the back garden to air.

But also advised to just take extra care for the next 2-3 weeks........ so started a regular workout in the house or in the back garden.

Keep safe folks.

So, a day of updates, I spoke with my gp, and basically, yes, that's me finished at work for 12 weeks! Don't know what I feel! The last time I was off this long was when I was diagnosed. 

Stay safe

Sal x

Thanks for the update Sal. I missed a call from my GP this morning (the 10 minutes I left the couch to get dressed!) so will have to wait again now! I'm in the same situation as you on w&w and only recently diagnosed. Did your GP say you should have got a letter? I think the post is quite delayed.