Left to #WatchWaitWorry
To address these unmet needs of CLL patients in terms of information and service provision throughout the chronic cancer journey, we make the following recommendations:
Recommendation 1: Ensure patients who are on active monitoring are adequately accounted for in Government and NHS planning for cancer care.
Recommendation 2: Timely signposting to resources from trusted sources to help patients better understand their diagnosis and Watch and Wait.
Recommendation 3: Improving doctor-patient communication to ensure patients are better informed and feel more involved in their care.
Recommendation 4: There is a need for guidance for healthcare professionals, on how to support clinical needs and aid patients to navigate some of the challenges involved with living with and coping with a chronic blood cancer diagnosis and Watch and Wait.
Recommendation 5: All chronic lymphocytic leukaemia (CLL) patients should have access to a named key-worker, normally a Clinical Nurse Specialist (CNS), who can support their clinical and holistic needs following diagnosis.
Recommendation 6: Charities such as Leukaemia Care and CLL Support provide invaluable support for patients online, over-the-phone, and in-person. Patients need to be made aware of the range of support available to them at an early stage in their CLL journey.
Read our campaign report to learn more about the challenges patients on Watch and Wait face and how, with your support, patients lives on Watch and Wait can improve.
“I have never had to be so proactive in my health care. I think many patients on watch and wait
have been left to the mercy of chance. Unless you have spent time and effort to keep informed
through LC information, LC Facebook groups, webinars etc., then you are at the mercy of how
informed your GP is or if you have the luxury of a CNS.”
– Margaret Miller
CLL patient on Watch and Wait for 9 years