"A disheartening experience"

We attended the oncology clinic at Royal Berkshire this week with my father, who has advanced prostate cancer. We had previously seen a doctor who was exemplary: clear, compassionate, and constructive. They gave us confidence, explained options, and helped us move forward quickly to secure Abiraterone with Prednisolone cover. Without their approach, I doubt we would have achieved that outcome.

By contrast, our experience with this doctor left us both shocked and deflated. We feel if our first appointment had been with this doctor my father would not now be receiving the treatment he needs.

The tone and manner from the outset was defensive, supercilious, and dismissive. Questions were brushed aside as if they were impertinent rather than legitimate. At times, they appeared to deliberately misunderstand what I was asking. Instead of acknowledging concerns and clarifying, they made me feel like a nuisance. My father, who is in his 80s, was treated politely enough, but I was met with an attitude that felt condescending and obstructive.

As a family, we are not passive. We take responsibility, we prepare, we research, and we advocate. My father has complex needs: metastatic bone disease, post-polio syndrome with significant balance issues, and now the added side effects of ADT and Abiraterone. We came to clinic with clear questions about bone-strengthening treatment, monitoring, and communication. Instead of constructive engagement, we received evasive replies and outright dismissal of important points, and lack of accountability on communication.

The most distressing issue was around my father’s PSA results. Bloods were previously taken, at our initiative, specifically so that the results would be available for the clinic. They were available the following day. Yet nobody gave us the result until we were sat in clinic.

This meant my father spent the entire day before his appointment in a state of severe anxiety — with elevated blood pressure and indigestion from the stress of what if it had risen again? To a man with advanced cancer, this is not a minor issue. It was avoidable harm caused by a simple failure of communication.

When I raised this, the doctor brushed it aside. They suggested this was simply how the system works. There was no acknowledgment of the impact, no apology, no sense of accountability. To me, this was profoundly unacceptable. 

We also asked about bone-strengthening treatment. NICE guidelines are clear that in advanced prostate cancer, bone health should be addressed proactively — particularly in older men on long-term ADT, and especially those with widespread bone metastases.

My father has post-polio syndrome and an unsteady gait. He is at high risk of falls. The consequences of a hip fracture in a man in his 80s with cancer are catastrophic — 90% do not survive a year after such a fracture. This is not a minor add-on, it is a critical element of his care.

Yet the doctor dismissed bone protection as not a priority. They told us oncology does not initiate such treatment, and that it should come from the GP. This directly contradicts what our previous doctor had explained, and I feel it leaves us trapped in a cycle of buck-passing. The GP has told us clearly they cannot and will not initiate Denosumab or even oral bisphosphonates for cancer patients — they will only continue treatment once oncology has started it.

So here we are, stuck in the middle. Oncology says go to your GP. The GP says we can’t, oncology must lead. Meanwhile, my father is at high risk of fracture and nothing is being done. When I pressed the point, the doctor became dismissive rather than engaging with the seriousness of the situation. 

Another example was the doctor's repeated reference to my father’s low protein. They used this vague term without clarifying the were referring to serum albumin, not dietary intake. My father has put on weight, eats well, and consumes over 100g of protein daily. Simply telling him his protein is low without explanation was not only confusing but misleading — and when I asked for clarity, I was met with obfuscation, irritation rather than a clear explanation.

We left frustrated that vital issues — bone protection, communication, and accurate explanation of blood results — had been minimised or brushed aside.

The contrast with our previous doctor could not be starker. Where they listened, explained, and problem-solved, this doctor deflected, minimised, and dismissed. Where our previous doctor gave us confidence, this doctor left us distrustful.

Oncology is not just about prescribing a drug. It is about supporting patients through the most frightening time of their lives, addressing risks holistically, and ensuring that communication is clear and compassionate. Patients have the right to access their own results without unnecessary stress. Families have the right to expect accountability and clarity, not defensiveness and dismissal.

I do not share this lightly. I respect the pressures on NHS staff and the immense workload clinicians face. But the way this doctor handled our consultation was counterproductive.

Had they been our first point of contact, I genuinely believe my father would not now be on Abiraterone. It was only because of our previous doctor's excellent consultation and our own persistence that we pushed through. That should not be necessary. Patients should not need to fight, or fear being difficult, to get guideline-based care.

We ask that the Trust ensures:

1. PSA results are communicated promptly to patients once available, not withheld until clinic.

2. Bone-strengthening treatment is taken seriously, with responsibility clearly owned by oncology rather than endlessly passed to GPs.

3. Doctors avoid vague or misleading terms (low protein) and explain results related to clinical results such as albumin in this instance. 

4. Patients and their families are treated as partners, not as adversaries.

We hope Royal Berkshire takes this feedback seriously, for the sake of other families who may not have the resources or persistence to push back.