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Weekly Blog: My submission for new guidelines for the delivery and management of a diagnosis

PCFA_OC_Manager
Community Manager
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Weekly Blog: My submission for new guidelines for the delivery and management of a prostate cancer diagnosis

(Even though I’m not a doctor!)

 

By Tim Baker

Changing the health care system is slow, difficult and expensive.

So, I thought I’d save everyone a lot of time, cost and trouble by designing new guidelines for the delivery and management of a prostate cancer diagnosis, based on my admittedly complete absence of medical qualifications, apart from seven years as a prostate cancer patient.

There has been much discussion in recent times about the need for new guidelines for men with prostate cancer, recognising the mounting evidence for a multi-disciplinary approach. While of course, there needs to be an evidence base for anything the medical profession recommends, there also needs to be adequate recognition of the lived experience of patients and what works practically in managing their day-to-day lives and the multi-layered challenges of living with prostate cancer and its treatment.

Here, then, is my submission for consideration by whichever relevant authority decides these lofty matters. Consider it a discussion paper, if you will. And it’s pretty straight forward:

  1. Every medical specialist delivering a prostate cancer diagnosis to request the presence of a social worker, counsellor or prostate cancer nurse to spend time with the newly diagnosed patient to provide emotional support, answer questions and help coordinate the provision of a coordinated, multidisciplinary care plan.
  2. Every man diagnosed with prostate cancer to be referred to an exercise physiologist, especially when being prescribed hormone therapy. The evidence in support of exercise, and high intensity interval training specifically, is now so compelling it can’t be ignored, particularly for men on hormone therapy.
  3. Every man prescribed hormone therapy to be referred to a men’s sexual health special and a psychologist. The impacts of hormone therapy have been well understood and well documented for decades and there is no excuse for this treatment to be prescribed without appropriate, supportive therapies put in place to mitigate the often-devastating side effects of treatment.
  4. Every man diagnosed with prostate cancer to be referred to a nutritionist. The evidence is mounting in support of a plant-based diet to improve outcomes for men with prostate cancer and qualified guidance can support men to make whatever changes to their diet they find manageable, promoting fresh fruit and vegetable, ocean-caught fish, soy products like tofu and tempeh, and reducing red meat, alcohol, wheat, and dairy.
  5. An advanced prostate cancer diagnosis to trigger a health care plan, which provides five referrals to allied health professionals like those mentioned above, subsidised by Medicare. This type of care plan for those with chronic illness already exists under Medicare but many men are unaware of it or only find out about this years into treatment, when the greatest benefits might be derived if these supportive therapies are offered upon diagnosis.
  6. Prostate cancer support groups to incorporate guidance on exercise, diet, erectile dysfunction, stress reduction through a mindfulness practice like meditation.
  7. The offer of a referral to a specialist cannabis doctor to consider the role of medicinal cannabis to assist with sleep and pain management.
  8. The offer of relationship counselling where relevant to help couples manage the many challenges that result from prostate cancer and its treatment to sexual intimacy, the management of mood disorders and guidance on effective support and communication.
  9. Regular monitoring of men with prostate cancer and their partners for psychological distress.
  10. Oncologists and urologists to provide the book Facing the Tiger by Prof Suzanne Chambers to every man diagnosed with prostate cancer, which spells out best practice psycho-social support for men with prostate cancer.
  11. Staging of these referrals to allied health professionals over the first year or two post-diagnosis to avoid a sense of overwhelm and information overload. In consultation with the patient’s treating physician(s) and according to need, patient preference and importance, these supportive therapies might be offered in the following order at one or two month intervals: exercise physiologist, nutritionist, psychologist, sexual health specialist, medicinal cannabis doctor.
  12. Recommendation to utilise PCFA telehealth prostate cancer nurses and counsellors, particularly for men in regional or remote areas where supportive therapies may be difficult to access.
  13. Provision of financial advice on accessing Centrelink support where relevant, permanent disability and trauma insurance that may be attached to a patient’s life insurance or superannuation they be unaware of. Advice on whether patients might qualify for a concession card to reduce the costs of medication and NDIS support to assist with the ongoing provision of support services.
  14. Every man diagnosed with prostate cancer to be offered a puppy.*

And there you have it. Not so difficult really. Where should I send my invoice? Of course, I’m not a doctor and others more qualified than I might wish to finesse these recommendations slightly. And yes, there are costs involved but there are also savings in relieving the pressure on an already over-burdened, frontline health system and referrals to suitably qualified allied health professionals to reduce reliance on the health system. But I’m confident that this submission represents the bones of an effective and viable strategy for optimal care for men with prostate cancer. Anything you’d add to this list?

*Yeah, look, not entirely serious about the puppy thing but would like to see more research in this important, emerging field.


About the Author

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Tim Baker is an award-winning author, journalist and storyteller specialising in surfing history and culture, working across a wide variety of media from books and magazines to film, video, and theatre. Some of his most notable books include “Occy”, a national bestseller and chosen by the Australia Council as one of “50 Books You can’t Put Down” in 2008, and “The Rip Curl Story” which documents the rise of the iconic Australian surf brand to mark its 50th anniversary in 2019. Tim is a former editor of Tracks and Surfing Life magazines. He has twice won the Surfing Australia Hall of Fame Culture Award.

Tim was diagnosed with stage 4, metastatic prostate cancer in 2015 with a Gleason score 9. He was told he had just five years of reasonable health left, but seven years on, at 57, he’s still surfing, writing, and enjoying being a dad. His latest book, Patting The Shark, also documents his cancer journey and will be published in August. Tim will be sharing weekly insights into his journey to help other men who have also been impacted by prostate cancer.


Help is Available

Prostate Cancer Specialist Telenursing Service

If your life has been impacted by prostate cancer, our Specialist Telenursing Service is available to help. If you would like to reach out to the PCFA Prostate Cancer Specialist Telenurse Service for any questions you have about your prostate cancer experience, please phone 1800 22 00 99 Monday - Friday 9am - 5pm, Wednesday 10am-8pm (AEDT).

Prostate Cancer Support Groups

PCFA is proud to have a national network of affiliated support groups in each state and territory of Australia consisting of men and women who have a passion for assisting others who encounter prostate cancer. This network is made up of over 170 affiliated groups who meet locally to provide one-to-one support, giving a vision of life and hope after treatment. Call us on 1800 22 00 99 to find your local group.

MatesCONNECT Telephone-based peer support

MatesCONNECT is a telephone-based peer support program for men affected by prostate cancer. If you’ve recently been diagnosed with prostate cancer, our MatesCONNECT service can connect you to a trained volunteer who understands what you’re going through. All of our volunteers have been through prostate cancer. Simply call us on 1800 22 00 99 to be connected with a volunteer.

Newly diagnosed? or need to find more information? Access the PCFA resources here.

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