Health Literacy: Prostate Cancer

I have worked in health communications for about 15 years; writing health content and performing qualitative research. A key area of focus for me is health literacy and accessibility. Another specialist area is prostate cancer.  In particular, men’s experiences and unmet needs with advanced prostate cancer.  

However, it wasn’t until I had to support my dad with his prostate cancer diagnosis that I got firsthand experience. It is so tricky for someone when facing multiple barriers within the healthcare system. Let me explain.

My dad is a person with quite complicated needs

My dad is in his 70s, and he has always been a bit of a character. He is a carpenter and lives in a shed he built himself! However, he had a neurological event about eight years ago that impacted his cognitive functioning. He is also an ex-alcoholic and is on lots of medication due to his neurological condition and other mental health issues. He sometimes struggles to remember things.  Dad left school very young and doesn’t have particularly high literacy levels. However, he can build you an amazing wooden kitchen!

An “accidental” diagnosis

My dad went to see the GP about one particular issue. But whilst he was there, the GP arranged a blood test to check dad’s PSA (which helps detect prostate cancer). This test was carried out without his knowledge or consent. This was the beginning of a series of events where my dad wasn’t adequately involved in healthcare decision-making. 

As it turned out, his PSA levels were a bit high. But because of my knowledge of prostate problems, I knew this could be for various reasons, not necessarily cancer. As it didn’t seem that the GP had explained this to dad, I tried to reassure him before he went for an MRI scan. Because this occurred during the second lockdown, neither myself nor my siblings could go with him.

After the scan, dad said that the doctor had told him the results were ok, there was no problem in his prostate. However, they had just seen ‘a bit of a mark’ in his pelvis. Dad put this down to an accident he had on his motorbike in the 80s! A few days later, dad received a text, including a letter from the urologist to the GP. My dad doesn’t do text messaging, so my sister downloaded it for him.

When my sister and I read this letter, it became clear that something suspicious was found in his prostate, which was highly likely to be cancer and that he needed to have an urgent transperineal biopsy. 

Miscommunication 

It seems that this information wasn’t adequately conveyed to dad when he saw the doctor as he had no idea that they suspected cancer.

It put my sister and me in a challenging situation.  We knew that a lesion was found in his prostate, but my dad did not. He didn’t even understand what the biopsy was for. We were not happy with this situation, and I contacted PALS.

The advisor in PALS said that they couldn’t share any further information with me but suggested it may be helpful to speak to the GP.  When we contacted the GP practice, they advised that my sister and I should be ‘honest’ with my father and try to explain the potential diagnosis to him. WHAT????

I felt very upset about this. Not only did we need to cope with the fact that my dad was facing a cancer diagnosis, but we were also expected to explain this to him. All because the professionals and hospital admin failed to do this.

I tried to escalate the complaint, but it was too tricky. We didn’t have many rights, even though we are listed as official ‘carers’ on my dad’s GP record. In the end, we gave up. Instead, we found a way to gently open his mind to the possibility that the outcome of the biopsy might not be as he expected. 

In the end, I was also able to get in touch with the urology nurse (lots of ringing around).  She was going to do the biopsy and she actually very helpful and reassuring.

Getting a diagnosis

By the time it came to my dad receiving the diagnosis results, we had more of a handle on things. Additionally, I have explained my dad’s memory issues in this and other appointments and asked health professionals to write things down for my dad.

Although I couldn’t attend the meeting at the hospital, I was able to listen to the phone call to support my dad. Unfortunately, we found out that he did have advanced prostate cancer. However, he had many treatment options, and the doctor explained this to him clearly. 

Moving forwards, my dad gave permission for me to have direct contact with the consultant. This means that I can follow up with her if I can’t make any of dad’s appointments. 

Dad still forgets a lot of what is going on and myself and my siblings have to work as a team to sort things out for him. But it’s much better than the early days of his diagnosis.

What can healthcare professionals learn from my story?

● I know the NHS is moving to “digital first” methods of patient communication, but it will not work for everyone. There needs to be an option for people to be contacted by phone or letter if required. My dad couldn’t open the letter by text message, which placed the family in a difficult position. 

● The content of that letter was difficult to understand. The language was complex, and dad didn’t understand it. I doubt that any layperson would. Medical letters need to be written in Plain English!

● Lots of people struggle with health literacy. We see this especially with older people whose clinical teams communicate bad news about their health. Consequently, this heightened anxiety impacts cognitive processing. It would be great if all patients could be given clear written information about their diagnosis using everyday language.  

●      NICE guidance for prostate cancer says health professionals should “Offer people with prostate cancer information tailored to their own needs.’ This information should be given by a healthcare professional (for example, a consultant or specialist nurse) and may be supported by written and visual media. This was definitely not done for my dad. He presents as being ‘ok’, but they would have seen his medical history if they had read his notes. 

● It’s a more significant issue, but healthcare professionals should consider carers and next of kin when communicating with patients who have additional needs. When they fail to do this, a significant burden is placed upon us. In our case, it was so hard for our issues to be taken seriously!

● Patient’s needs and preferences should be taken into consideration before tests are performed on them by their clinical teams. In dad’s case the PSA test was done without my father’s knowledge. So he was not prepared for the possible results of it. In the end, the practice nurse called him to apologise about this, but that was too late!

I understand that this is a very tough time for the NHS, but sorting out my dad’s diagnosis and care was more complicated and challenging because of these struggles. Simple measures could have prevented any additional hardship and stress. 

What can patients learn from my story?

  • If you receive information that you don’t understand then do tell someone who can help you.
  • When you can’t access information online, then let your clinical team know, and ask for a letter to be sent to you.
  • If you are going for tests and don’t know why, then see if there is a clinical nurse specialist you can speak to for advice.  For example, in dad’s case,  a prostate clinical nurse specialist worked with the consultant, and it was easier to speak to her.
  • See if there is a charity who specialises in your illness who you can contact for advice and support.

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