In June, at the European Haematology Association conference, members from acute leukaemia patient advocate groups across the globe joined together to discuss the creation of an Acute Leukemia Advocates Network (ALAN).
ALAN has now been formally founded, hosted by the Leukemia Patients Advocates Foundation. ALAN aims to build capacity in the members of the network to deliver tailored services to acute leukemia patients and carers on the national level, while joining forces between organisations on the policy and research level across countries. The steering committee has been elected and we are pleased that our very own Zack Pemberton-Whiteley (Head of Campaigns and Advocacy) has been appointed as Chair.
Zack Pemberton-Whiteley commented: “The creation of ALAN is a positive step forward for acute leukaemia patients. ALAN provides the opportunity to strengthen the work and the voice of advocates across the globe. Both patients and carers will benefit from the development of tailored information and support services for acute leukaemia. Patient advocacy organisations, such as Leukaemia Care, will also be better equipped to support patients and carers by learning best practices from one another.”
You can find out more about the work of ALAN at: www.acuteleuk.org
ALAN recognises the importance of their work being directed by patient and carer experience. That’s why ALAN is supporting the Spot Leukaemia campaign for Blood Cancer Awareness Month. The campaign was directed by Leukaemia Care’s patient experience survey that identified a number of issues in patient experience at diagnosis.
You can find out about the campaign here: www.leukaemiacare.org.uk/spot-leukaemia
Leukaemia Care’s patient experience survey was one of the biggest done to date (including 500+ acute leukaemia patients), which is significant for directing future work in a patient focused and evidence based manner.
For example, the survey found that 44% of acute leukaemia patients experienced symptoms for over a month before visiting their general practitioner (GP). This highlights an issue with the public recognising the signs and symptoms of leukaemia, leading to a delay in diagnosis. The quickly progressing nature of acute leukaemia means that a delay in diagnosis and treatment could significantly impact the patient’s outcome.
Read more about the Living with Leukaemia survey at: www.leukaemiacare.org.uk/living-with-leukaemia
In order for the work of global patient advocate groups to be similarly focused, ALAN is developing a Global Quality of Life Survey for acute leukaemia patients and caregivers.