Empowering blood cancer patients through information accessibility.
Kathryn Huntley, general manager of People Living With Blood Cancer at the Leukaemia Foundation, discusses how patient support organisations and oncologists can work together to improve access to information and guidance after a blood cancer diagnosis.
Q: Why is accessibility to information around disease so specifically important for blood cancer patients, and how can oncologists play a supporting role in providing this access?
A: Blood cancers combined are now the second-most-diagnosed cancer and the second-most-common cause of cancer-related deaths in the country. Yet, unlike other cancers, blood cancer can develop in anyone at any stage of life – there is no way to prevent it through lifestyle change and there are no screening programs to detect it. So firstly, it is crucially important for every Australian to be armed with information about the signs and symptoms of blood cancer so they are able to identify the disease and act on this immediately by consulting their GP or specialist.
The reality is blood cancers can develop rapidly. Someone who is well one week can start showing changes in how they’re feeling the next, and this leads to a diagnosis. But unlike other cancers, the time between these two points can be very short, and there often isn’t that lead-in period where you have a chance to investigate what could be going on with your body. We know some Australians go to their GP feeling like they have the flu, then later get a phone call telling them they have blood cancer – which they never would have suspected when they presented. This is quite unique to blood cancer – if you find a lump in your breast, or an unusual mole, you are often awaiting test results and preparing or bracing yourself for that diagnosis moment, but a blood cancer diagnosis often comes out of the blue. This means that in the moment of hearing they have cancer, blood cancer patients have to get their head around the disease right there and then.
Australians regard the Leukaemia Foundation as a trusted information source in this moment and beyond. Blood cancers are complex, so we are here to provide information to help navigate the complexities around each specific blood cancer and what it means for each patient. But while we are providing them with this information, we want patients to be able to sit and have conversations with their specialist around their treatment and understanding their blood cancer. It’s important that the Leukaemia Foundation is providing information at a level that makes sense for a new patient about their disease and treatment while they are trying to navigate the complexities involved, but it is equally important that oncologists are on the journey with their blood cancer patients from day one. We want to see patients going into their sessions with their oncologists to find out what their blood cancer is, what their treatment pathway will be, and how long that treatment will be, because we know their treating specialist is the right person to provide these specific answers. If they then want to know more about what they need to be considering outside of treatment, such as impacts on family or logistical or financial implications, and where they can go to receive this information, the answer to that question can be the Leukaemia Foundation.
Q: What information and services offered through the Leukaemia Foundation can support patients once they receive a diagnosis?
A: Our patient disease booklets have been a long-standing form of information delivery. These booklets are directed at Australians who are diagnosed with specific different types of blood cancers. They have not only been an ongoing key tool for people and their families when they are first learning about blood cancer, but they have also been a key tool for health professionals, whom we know are using these booklets as part of an information pack they are providing to patients at treatment centres. We know when someone is first facing a blood cancer, there is so much going on in their mind that it is crucially important to have information available as a written resource that they can digest later on. We’ve reviewed these booklets in recent years, and they are now providing targeted information that someone needs to know to navigate and survive that first month after diagnosis, and hopefully empowering them this way means they will then seek to explore other sources of information, such as our Leukaemia Foundation website or our information seminars.
These seminars explore different treatments, changes in treatments and research, which can build hope and confidence for patients in the treatment pathway that is being proposed to them. Importantly, they also explore what patients can do for themselves, such as looking after their nutrition and managing energy levels, or practical decisions they may need to consider, such as developing a will. We want them to feel empowered armed with this kind of information, so that they can focus on surviving and returning to a full life, free from blood cancer. These sorts of services and information resources can help patients to feel as though they can take charge and assume some control in a situation that may feel beyond their control.
Q: What would you like oncologists to know about the Leukaemia Foundation and referring patients to the organisation?
A: In an ideal world, the notion of blood cancer patients receiving support form an organisation like the Leukaemia Foundation would be more normalised in a haematologist or oncologist practice. We find patients can sometimes wait until a crisis point before reaching out because they feel there are so many others more in need of support than themselves, as opposed to viewing support as a coping tool that they can access early, so we would like to see patients more aware of our organisation and be across the services we can offer them earlier. The first referral to us from an oncologist or haematologist enables that to happen, and enables patients to be in the driver’s seat of understanding how the Leukaemia Foundation may be able to support them across their lifetime.
We often hear from patients with chronic blood cancers their reluctance to raise with their specialist that they are not okay. They are very aware of the visually sick patients they see in clinics while they are sitting on “watch and wait” status. The value of being able to refer these patients to us can’t be understated – we can help remove the fog that clouds their everyday so they can be living their best lives without their blood cancer impacting on that.
Finally, as we see more and more patients being treated in outpatient settings and spending less and less time in front of all our health professionals, including allied health, it becomes even more important for treating specialists to make that referral to the Leukaemia Foundation for their patients. We are about to implement a digital online referral process, which will be an easy way for specialists to get hold of our team. We encourage patients or their loved ones to please contact our Blood Cancer Support Coordinator team on 1800 620 420 or through firstname.lastname@example.org to access our support free of charge, and there is the option to pass over our collateral to patients and tell them we are there for them and to put the power back into the patient’s hand. We know through many of our patients that when asked how they want to learn about us, they say they want to learn about us through their treating specialist. Treating specialists are one of the first people a blood cancer patient will trust once diagnosed, so it is important they are advocating all elements of a person’s wellbeing along the blood cancer journey by raising the suggestion of connecting with the Leukaemia Foundation.