The power of personal stories and patient centred care

On Wednesday this week I will be giving a talk to a group of GP trainees at West Suffolk Hospital about Men's health. So far none of this seems out of the ordinary for us at MedLed.

But this is a talk on behalf of the Movember foundation and includes my very own experience of dealing with Men's health issues.

I’ll be sharing my Testicular cancer diagnosis; the journey from diagnosis to present, and my reflections as someone who is now 40, and some of the things I wished I’d known when I was 27 and going through all the tests and treatment.

I wrote an article on Linkedin back in 2018 about why I became a Movember ambassador. Whilst reflecting and writing a couple of things really struck me. 

The first was discussing when my “all clear” came through. I wrote that I emerged from my cabin after the call with a huge smile on my face and went on to celebrate the good news. Little did I realise at the time that, despite being given the all clear, a testicular cancer diagnosis doesn’t simply end on being given all clear. 

Dealing with it physically has not necessarily been an issue since. Having to get an injection every 10 weeks for testosterone obviously has its challenges, but more so, it’s the mental challenges that stay with you. I’ve been fortunate enough not to have personally suffered from poor mental health, but more so the challenges faced when making life decisions, such as having children. 

This was something that was never really discussed with me around my diagnosis in my twenties, or at least not to an extent to make me think about it as seriously as I should. It was only when my partner and I started discussing and exploring the idea of having children, that the significance of my earlier diagnoses became more apparent.  The current rules for funding of IVF, mean that it all depends on the age demographic of where you are based. In our case both Twickenham and Nottingham only funded one round of IVF. In contrast to some friends who lived in North West London who had 3 attempts funded. This very much struck me as blanket rule making, with little room for thinking about patient-centred treatment. 

Surely, we should be looking at the reasons why people are having to go through IVF and not the age demographic of the area? As someone who had gone through a tough cancer diagnosis and subsequent treatment, this seemed ultimately to be an unfair process.

As someone that has experienced the healthcare system as a patient, these experiences inform the work I do with MedLed as a trainer, both consciously and subconsciously. I’m also very proud to be part of Movember’s forthcoming campaign highlighting the importance of putting real life patients and their experiences at the centre of decision making on life-changing things such as access to fertility treatment. Most of us have been a patient at some point in our lives, and we can use those experiences to remind us of the importance of empathetic, personal care.

More recently, it’s struck me that after my diagnosis, I was essentially left to my own devices. This may have partly been because of the way I am as a patient; I’ll admit, I’m not very good at sitting down! But also, I believe it is something which may come from my diagnosis - of testicular cancer.

This particular cancer, thankfully, has a huge survivor percentage and affects mainly young men who, if we believe the stereotypes, just want to “get on” with their lives. Now as an older, and hopefully wiser, man I am very much of the opinion that healthcare professionals should offer some sort of support to anyone who has been through a cancer experience, even if that is simply signposting people to fantastic charities such as Movember and Macmillan.

I really am looking forward to this week’s discussion and helping the GP trainees in West Suffolk to think about how they may be able to encourage everyone to discuss Men’s health more openly, and to consider how we can all help men overcome their own challenges long beyond diagnosis and the “all clear”.