UK CLL Forum *Follow-Up Survey for UK CLL Patients regarding the support you're getting- Please complete if you can.

[Jm954]

The UK CLL Forum is the special interest group for medical doctors in UK with an interest and working in the clinical field of CLL management. They have partnered with CLL Support (who moderate this site) and Leukaemia Care to promote a survey which will inform future planning .

This is their message to our UK CLL patients

"On behalf of the UK CLL Forum, Leukaemia Care and CLL Support, a big thank you for completing our previous survey. The information gathered is already providing vital information for our CLL specialists in their fight against COVID-19 and will help them decide how best to treat and monitor CLL patients.

We need to continue this work and we are now asking you to please complete a second survey so that we can see how things may have changed over time. We have refined the survey to include questions on your quality of life, to help us to monitor the impact of shielding. This feedback will allow us to identify what further action we may be able to take to support patients.

We promised to give feedback on the findings of the first survey, and a summary of these is given below. A much fuller picture will emerge when we receive the results of this new survey. We plan to publish all results over time.

We can’t stress too highly how vital your input as a CLL patient is, which is why we are asking you to please complete this new survey below, it will take only a few minutes, but the information will be enormously valuable."

The survey is open to all UK CLL and SLL patients and can be found here:

us5.campaign-archive.com/?e...

Many thanks

Jackie

[UK-Sparky]

Thanks Jackie, I cannot emphasise enough how this feedback is helping the UK clinicians, scientists and researchers as well as your charity to identify the impact on us and needs of this community at this time. The new survey had 340 responses in the first 24 hours, please, if you are in the UK, fill it in and help us help you.

[mrsjsmith in reply to UK-Sparky]

Hi Marc,

Did it straight away and I found some of the questions interesting and I do hope it will be of use to all of us.

Colette x

[UK-Sparky in reply to mrsjsmith]

Thanks for support Colette, stay safe, sane and sanitised!

Marc

[mrsjsmith in reply to UK-Sparky]

Thank you Marc,

I can manage 2 out of 3, sadly not sure about the sane 🤔. I managed to get hold of the Sean O’Neill article from The Times and enjoyed that and his take on lockdown.

Colette x

[pkguk2 Partner CLL Support Association]

Thanks for posting this Jackie. It's a vitally important survey, the results of which will help doctors and CLL Support to fight for the interests of patients. The earlier survey has already given us information to help patients who have yet to receive the vulnerability letter from the government.

[Wroxham]

Thanks Jackie. Just completed second one.

Stay safe.

Sue

[PaulaS Volunteer]

I've just done the second one too. Thanks Jackie,

Take care,

Paula

[Peggy4]

Thanks Jackie. Done.

Peggy

[NooNoo14]

Completed

[Ghounds]

Thank you. Completed. Had a senior moment and couldn't remember if I did the first survey 🙈

[HAIRBEAR_UK Founder Admin]

Thanks Jackie and CLL Support and most importantly thank you to all UK patients here in our HU community for contributing to this survey . 931 have now completed the survey (absolutely incredible commitment from everyone to share their own experience to help others). I clap for you all!! Every single persons information combined is already aiding direct support, advocacy and care provision . The survey is still open to UK patients. us5.campaign-archive.com/?e...

Thank you

[Jm954 Administrator]

Thank you to everyone who has completed the survey. If you haven’t and you’re in the UK, there is still time and we would be very grateful if you would do so.

Jackie