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Click the video below to hear from our Senior Policy and Public Affairs Officer, Ella, who explains how our ‘Left to WatchWaitWorry’ campaign could help to improve the lives of people with chronic lymphocytic leukaemia (CLL) on Watch and Wait.
How can you get involved?
Contact your elected representative
We’ve put forward recommendations to decision-makers for improved information and service provision throughout the chronic cancer journey.
Send a letter to your elected representative asking them to consider our recommendations to improve the Watch and Wait period. We’ve written the letter for you, all you need to do is fill in your name, email address and postcode – it’s that simple! Click the button below to send yours.
Start the conversation online
Read and share the stories from patients supporting the campaign on social media, using the hashtag ‘Left to #WatchWaitWorry’. You can read our patient stories by clicking here.
What is Watch and Wait?
It is estimated that there are currently around 13,300 chronic lymphocytic leukaemia (CLL) patients living on Watch and Wait as their current treatment option. A time which patients often call ‘Watch and Worry’.
The process regularly monitors CLL over time to see how the cancer progresses. Treatment will only then begin once CLL cells are taking up space within the blood, causing a reduction in healthy cells and patients start to have symptoms.
The length of time a patient is on Watch and Wait is uncertain and varies from person to person. On average, most patients are on Watch and Wait for between five to 10 years, and a third of patients will not need further treatment.
Why does it need improving?
In short, it is evidenced that many patients on Watch and Wait do not receive the support or clinical guidance they need. It can be confusing for a patient to be told they have a cancer, but they will not receive treatment right away.
“The concept of Watch and Wait is flawed! It leaves one anxious and over-concerned about one’s health all the time! Consistent support is not there!” (Liz, 74)
For many, this lack of guidance has a substantial physical and mental burden.
“I found my appointments with haematology increasingly frustrating. I rarely saw the same consultant twice and felt my concerns over my fatigue were being dismissed.” (Anton, 53)
Leukaemia Care is committed to improving the experiences of CLL patients on Watch and Wait and the Left to #WatchWaitWorry campaign is here to ensure Watch and Wait patients feel supported during a potentially worrying and anxious time in their lives.
The facts
- 87% of patients on Watch and Wait state that they would have liked to have support after diagnosis, but 60% of those patients are not offered any additional support from their hospital.
- 50% of patients on Watch and Wait express feeling more concerned or anxious since diagnosis, with 13% of people feeling constantly depressed or anxious.
Our campaign recommendations
The key things that need to change to improve the experience for patients are:
- Better communication about Watch and Wait, including high quality information
- For NHS planning to make explicit mention of people not on active treatment
- More support for CLL patients on Watch and Wait, including equity of access to CNS support
Patient stories
Meet more people who are currently living on Watch and Wait here.
To learn more about the Left to #WatchWaitWorry campaign, read our campaign report here.
If you have any further questions about our Left to #WatchWaitWorry campaign then you can contact our Campaigns team (Monday – Friday 9am – 5pm) by emailing campaigns@leukaemiacare.org.uk.