In 2018, we launched the #WatchWaitWorry campaign to advocate for chronic lymphocytic leukaemia (CLL) patients on Watch and Wait. Despite our best efforts, the COVID-19 pandemic has amplified existing issues that many CLL patients on Watch and Wait continue to face. There is an evident lack of support and clinical guidance for patients on active monitoring. Additionally, the effects on emotional wellbeing are significant and this will be explored throughout our patient stories. So, what support is available for CLL patients on Watch and Wait?
To find out more about the campaign and how you can get involved, click here.
Support available for CLL patients, carers, family and friends
Webinar: Why am I on watch and wait?
Talk to us!
Accessing the information you need from your GP or healthcare professional can be difficult when newly diagnosed. We can help bridge the gap between you and your healthcare professional by providing you with advice and support on how to have these conversations.
Alternatively, talking to an employer about your diagnosis may feel like a tricky task, but we can guide you through your employment rights and help you write a letter to explain your diagnosis.
Perhaps you just need to talk to someone about Watch and Wait or the experience you’re having, and we’re here for you.
Whether you’re a patient, a family member or a friend, you can contact us for the advice and support you need. We understand what you’re going through.
Watch and Wait Patient Information Booklet
What is Watch and Wait, why is it a treatment option and does it ever end? These are all common questions which we have answered in our information booklet, free to download here.
Learn more about your diagnosis and the Watch and Wait period in our information booklets. Our information booklets are available free of charge and the following booklets may be of interest to a CLL patient:
- Watch and Wait (also known as Active Monitoring)
- Chronic Lymphocytic Leukaemia (CLL)
You can download or order a hardcopy of any of our information here.
National Meetings and Support Groups
After a diagnosis of CLL, access to the right information, support and advice is vital to help you understand what you’re about to go through.
We run and coordinate many support groups for patients and their families affected by any blood cancer including leukaemia, lymphoma and myeloma, so you can share information and experiences with other people in your local area.
To find the right support group for you, click here.
Alternatively, we do run a National meeting on watch and wait/active monitoring for Chronic Lymphocytic Leukaemia (CLL). You can find all the meeting dates online here.
Want to hear from others who share an understanding of what you are going through? We have a range of online communities that share advice and updates as well as support one another. Join either our CLL online group or online support group or both!
Alternatively, our HealthUnlocked Forum provides a plethora of information and advice from patients, carers and healthcare professionals.
One-to-one buddy support
Some people find it particularly helpful to talk to someone who has had a similar experience. They may have been diagnosed with the same condition, faced the same treatment options, and may have shared the same worries, concerns, happy times or sad times.
Our one-to-one buddy support service matches you with one of our trained volunteers for regular or one-off telephone calls or emails.
Find out more about our buddy service here.
Being told you are on Active Monitoring can throw up many feelings of anxiety and uncertainty. Our Counselling Fund offers funding for up to six counselling sessions to help you navigate these feelings and speak with a professional about how Watch and Wait or other aspects of your diagnosis are making you feel.
Apply for our Counselling Fund here.
I’m on Watch and Wait but not a CLL patient
Check out our Watch and Wait booklet which is for any blood cancer patient on Watch and Wait here.