Patient Advocacy – a critical asset for men on the prostate cancer journey

The role of Patient Advocate at the Focal Therapy Clinic

The  pandemic has made all of us appreciate the challenges of managing our health amidst the fear, uncertainty and doubt generated by multiple and conflicting sources of information. Making decisions on our healthcare when faced with what at times seemed like either too much or too little information became overwhelming and stressful for many of us, and often led to avoidance of care or inappropriate treatment.

For most of us, the challenges facing our everyday healthcare needs are easing or at least becoming more manageable, but for cancer patients this is often not the case. Backlogs have led to waits for diagnosis and treatment, and in many areas services have been severely constrained. Not surprisingly this leads to increased levels of anxiety amongst cancer patients, which impedes decision-making and reduces quality of life.

Prostate cancer patients have been no exception, and are likely to have suffered disproportionately as a community given that prostate cancer referrals showed the largest fall in referrals of all cancer types during the lockdowns. Many have been left feeling detached from their healthcare provider and confused over their diagnosis and treatment.

The need for patient advocacy in this community is real, as men who would find navigating their prostate cancer diagnosis and treatment decisions challenging at the best of times are struggling to cope. Research has shown the benefits attributed to men who have sought support in their care through patient advocacy groups and other resources.

The vast majority of patients who approach us at the Focal Therapy Clinic do so for a second opinion, following experience with or advice to proceed with treatments that lead to fear, uncertainty and doubt in their lives. Our patient advocate team have spoken with hundreds of men over the last two years, and have developed a comprehensive picture of what is happening to men who are diagnosed with early-stage prostate cancer across the country and how to reduce, and sometimes eliminate, the FUD underlying their treatment decisions.

The patient advocate is the first port of call at our clinic, providing prospective patients with

  • balanced information on diagnosis and treatment options
  • empathy and support for the journey they are undertaking
  • a pathway to a second opinion with a world-class clinical team

Patient advocacy is a core element of our entire approach, from initial engagement through to MDT and treatment.

Brian Lynch, lead patient advocate at the Focal Therapy Clinic says; “It is a privilege to support men after they have received life-changing and often quite frightening news. We provide them, if they choose, a pathway to a second opinion with a world-class urology team, which is entirely focused on their individual needs and situation.”

Patient Advocate Eva Tomopoulou values the critical learning that her advocacy work supports, which continually improves and refines her work: “the advocacy work we do at The Focal Therapy Clinic is really important as it allows us to learn every day from different patient’s experiences navigating their diagnosis and decisions about treatment.
We speak to patients who come to us without knowing what their diagnosis means, or simply what questions to ask their doctors next time they see them. In the time we have with them, we try to make them feel that they can make decisions for their treatment from a position of agency. That means not just knowing all their available options but also understanding what avenue of treatment would make more sense for themselves and their lives. I have seen a lot of patients feeling much more certain about how to move on after they have been in touch with us.”

Most of our patients agree.

We’re recruiting to grow our team of patient advocates. We’re looking for people who have had experience with prostate cancer, either directly or indirectly, and are passionate about helping others in their journey. We’re offering several paid and flexible positions, mainly requiring telephone engagement with follow-up emails to current and prospective patients.

If you’re interested or know someone else who might be, please get in touch.

[email protected]

0207 036 8870