Doctors are busy people, and most of us have enormous reverence for their profession, especially in the NHS - rightly so. However, when you’re faced with a cancer diagnosis it can be difficult to know what to ask, let alone find the headspace to really take in what you’re being told, and there’s a question as to whether the system makes it more difficult than it needs to be.
The Communications Gap
There seems to be a divide between doctors and patients, and with the best will in the world, it can be difficult to bridge. Perhaps that’s because doctors are so used to the terminology and the processes around cancer treatment that it can be difficult to convey information to someone who has never heard any of it before. Perhaps it’s because culturally we tend to accept that doctors always know what they’re talking about and, as they’re in the business of saving our lives, we feel like we’re in no real position to take up more of their busy schedules than we already do.
Except that it is our lives we’re talking about, and although the science side of survival is the specialist area of the medical profession, we are experts in ourselves and our loved ones. Treating is something of a collaborative effort - you as an individual do have the right to ask questions and to understand what’s happening to you.
When we speak to cancer patients, one of the things that is increasingly coming up is this feeling of not being heard in a medical environment. This can relate to all manner of things and at lots of different stages of the cancer journey. There are too many examples to detail one by one and ultimately, it’s personal.
Suffice to say that in everything from truly understanding what stage you’re at, to treatment options and why they’ve been selected, the realistic side effects and outcomes of treatment and why, or even if there are alternative options available to you, feeling supported, empowered, informed, and listened to are essential and often missing components of cancer treatment. So, what can we do?
Meet Mary Huckle
Mary Huckle, Pilates instructor, HuffPost contributor, speaker, blogger and stage four cancer thriver, is particularly articulate on the matter and is a firm believer that education is the key to better patient advocacy. She wrote on Instagram:
“Young or old, male or female - nobody is exempt from a cancer diagnosis, and it’s also not uncommon for young women to be fobbed off because of their age. In fact, it’s not news for anyone of any age to have their health concerns dismissed.
The stark fact is that there is a worrying lack of education, right across the board - within the general public, the cancer community itself, and astonishingly, within the medical profession.
From a patient perspective, we can subsequently feel intimidated or unequipped to ask questions. We lack the confidence to challenge decisions. We can be passive instead of assertive or proactive.
How do we communicate with those who literally have our lives in their hands?
How do we ensure that our medical teams are providing their utmost best duty of care?
- By taking ownership
- By claiming back control
- By being our own badass patient advocate”
She goes on to explain her belief that individuals can help do this is by:
- Being body aware and knowing your individual normal
- By knowing the facts about primary and secondary cancers
- By knowing the red flag symptoms of secondary cancers
- By researching the type of cancer, you have been diagnosed with
- By staying curious
Frankly, we couldn’t have put it better ourselves.
Advocating For Yourself and Your Loved Ones
Mary talks in particular from a breast cancer perspective, but her points resonate across the spectrum of cancer diagnoses. Like many, her greater confidence to challenge her doctors has been hard won over years of cancer treatments (she was diagnosed in 2007). She is currently taking part in a clinical trial - only because she challenged her doctor and advocated for herself until she was placed on one.
That may not be either necessary or the right route for everyone, but the point remains that if she could have been better equipped from day one of her cancer journey, it would have been one less thing to deal with. In her case, she also believes it could have affected her treatment plan. What about those receiving that first daunting diagnosis, however? What can we do to help them feel better prepared in discussions with medical professionals about their treatment?
When you are told about cancer and cancer treatment, there’s so much to take on board, including the emotional impact of it all, that you don’t really have the headspace to even think of questions. It might not be until sometime later that they occur to you, if you can work out what to ask at all. Often patients are given swathes of brochures and reading material - most of which is overwhelming to look through when you’re busy dealing with your own head, appointments, and treatment itself.
Mary says: “We have this reverence for the medical profession which means we often feel like we can’t question our doctors. I get so many messages about it. We need to say to people ‘don’t be scared to ask’, otherwise we get this bury your head in the sand mentality, which is especially dangerous with primary cancers if we don’t talk about the risk of recurrence.”
Her advice is to:
- Even though we’re all encouraged not to Google things, do your research. Just remain aware that statistics need to be read within context and try to find reliable sources.
- She talks about the importance of asking what things mean - what stage and what type of breast cancer do I have and what does that mean? Am I being given the best treatment or is this a generic chemotherapy protocol? What happens if the chemo doesn’t work? It’s ok to ask the hard questions.
- If you’re allowed, take someone with you to appointments so that they can help you remember what you’ve been told and ask questions that you might not be able to think of in that moment
- Take a pen and paper with you to make notes
- Even ask if you can record your appointments so you can go back and listen and really understand what’s been said or raise questions when you have more headspace
- Seek out peer group forums, social media groups and charities like MET UP UK for support and patient advocacy.
Of course, patient advocacy and getting your doctor to listen to you is both a complicated and personal experience. However, there are some universal elements that we can all work on together to help cancer patients feel more empowered, more supported and more informed about the journey they are on.
We hope that the suggestions here help you and your loved ones. If you have further suggestions about what to ask to help patients get the information they need, we would love to hear from you via our Facebook page or Instagram account.