What a year this has been; like a never-ending emotional roller coaster, as fear and despair give way to opportunity and insight, back and forth.
We’ve learned so much by listening to our patients’ experiences as they’ve navigated prostate cancer diagnoses amidst a raging pandemic and a restricted health service. Out of crisis comes opportunity, and as we review some of the insights gained over the year, we reinforce our commitment to improving the diagnostic and treatment experience for men with prostate cancer.
While Covid19 has dominated the healthcare system, it has generated reductions in cancer screening and compromises in diagnostics and treatment. Many of our patients have been severely affected; as described in one of our blogs, men have been put on treatment programmes that are inappropriate for their age and circumstance.
Covid restrictions have also allowed our patients and our doctors to innovate. Without the support expected from the health system, more and more men took the initiative to seek out treatment options for their prostate cancer diagnosis. In doing so they became informed and determined advocates for their own healthcare, and many of them who received treatment from the Focal Therapy Clinic are now keen ambassadors for focal therapy.
As our doctors couldn’t meet in person for their regular MDT reviews, we developed a digital solution that is delivering an improved, better service to our doctors and ultimately our patients. Find out how in our recent blog.
One group disproportionately affected by the Covid19 crisis has been the over 70s. Men over 70 who have come to the Focal Therapy Clinic tell us they feel ignored and abandoned in their prostate cancer journey, often arriving at a dead end as diagnosis and treatments offered are limited and depersonalised. Raj Nigam discusses this in depth in an OnFocus interview.
Another disproportionately affected group, in terms of both Covid19 and prostate cancer, has been black men. The pattern of Covid19 infection, hospitalisation and death revealed undeniable health inequalities between white and non-white communities, and the rise of the Black Lives Matter movement has ensured that racial discrimination and inequality is understood by all and discussed and addressed by many. Those of us involved with prostate cancer have long known that the burden of the disease is twice that for black men than for white men — 1 in 4 v 1 in 8. What’s even more glaring is the lack of research to understand this better. A blog from earlier this year highlights this.
Fortunately, Prostate Cancer UK recently announced a new study called PROFILE aimed at black and Afro-Caribbean men – it’s currently recruiting participants.
We’ve learned this year about the importance of data in giving our patients better care, both in the operation of our clinic and in clinical research. Engaging with the global research consortium Prostate Pioneer has shown us how “big data” is being used to answer some unsolved questions about prostate cancer. Hear our OnFocus interview. Next time you’re asked to give consent for your medical data to be used, you’ll understand why. Think of it as giving blood!
Covid has spotlighted the importance of good mental health in our collective wellbeing, as the isolation forced by lockdowns led to depression and anxiety for many people. This was exacerbated for those with cancer, as waiting became an unwelcome element in their journey, almost everyone had to endure delays in hospital appointments and procedures, but for those put on Active Surveillance, prolonged waiting became too much to bear. Mental health challenges faced by men with prostate cancer were explored in one of our earliest podcast interviews with Marc Laniado.
By far the one issue that has generated the most interest and discussion amongst our patients is the absence of public toilets in our communities. A pre-Covid disinvestment in public facilities was accelerated by Covid restrictions, and while everyone was inconvenienced, older men and men with prostate disease have been hit particularly hard. Many men told us they simply didn’t go out, reinforcing the mental health repercussions from isolation. From our many conversations on this topic, we honestly believe that available and accessible public toilets are the one single investment that can give men with prostate disease an immediate improvement to their quality of life. Join the conversation here and to continued debate on Facebook page.
All of these insights have been garnered through many, many conversations with our patients, some interviewed in our OnFocus podcast and others through patient engagement. Gathering these insights and shared stories over the course of 2020 means that 2021 will be a year of translating them into better care for our patients.
As always, we welcome your comments.
Sending very best wishes for a happy Christmas and a much improved new year!