Stay connected! Share and follow:

Leukaemia CARE Careline

We're here to talk | 24-hours a day

08088 010 444

FREE from landlines & most major mobile networks

New Campaigns and Advocacy Officer at Leukaemia CARE

written by

Leukaemia Care, Charity

  • Nick2

I was diagnosed with chronic lymphocytic leukaemia (CLL) in 2009, and was fortunate not to require treatment for seven years. During this period of “watch and wait”,  I became involved in advocacy and bringing together people affected by leukaemia. For me, meeting others and having access to information was key in aiding me and my family to understand and come to terms with diagnosis, what to expect, and how to cope and become involved in my healthcare discussions with my doctor.  

Why did I become an advocate? Because having access to appropriate information, care and support when required is key to improving patient journeys and outcomes. This was a challenge for me after my own diagnosis, I hoped to make a difference to help leukaemia patients where I could. Never did I expect that I would become so involved in this area!

Part of my accidental journey as an advocate began with me connecting with other patients online or at in person meetings, where shared experience helped me live with diagnosis. Finding ways to bring people together was key to why I founded online peer to peer support groups for leukaemia patients on the Macmillan website and HealthUnlocked health social media platform. As a trustee for CLL Support Association for five years, it was as a privilege to help to extend resources and build on the work of others before me. During this time, I became involved and experienced with planning and hosting patient conferences, website content provision, and campaigning for access to latest treatments and appropriate care.

As a Campaigns and Advocacy Officer at Leukaemia CARE, I continue to work with an experienced team to improve access to appropriate treatment, care and information for all those affected by a diagnosis of leukaemia, while always seeking to extend resources and improve outcomes.

38% of all leukaemia’s are diagnosed as emergencies. Whereas in other cancers, the number presenting as an emergency is 22%. Early detection and diagnosis improves outcomes.  

Recognition of clusters of vague symptoms by GPs and the public alike could be all that is required to reduce clinical and patient intervals at presentation and ultimately improve patient experience and outcomes. In the run up to September and Blood Cancer Awareness Month (BCAM), my core work will focus on promoting our free online learning and training modules designed to support GPs in recognising the symptoms of a blood cancer to aid early diagnosis, appropriate referral and stay up-to-date on the latest blood cancer information. You can find out more about this tool here.

Read Comments

  • Be first to comment on this article.

Get Involved! Add a comment...

*Your email address will not appear on the site

(Tick to hide your name when this comment appears on the site)