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What does it mean to be a patient advocate at a MCRC Town Hall?

I'm Mike Thorpe, a service user representative with Greater Manchester Cancer, and as such I attend the GM Cancer Urology Pathway Board.

 

I'd heard about the MCRC Team Science Town Hall events from other patients and carers who had attended them and they talked about the great experiences they'd had, so when I heard about the prostate town hall I was keen to attend. Being signed up to GM Cancer User Involvement means we're sometimes lucky enough to be invited to things like this.

 

The prostate town hall was really interesting with people from all parts of the diagnosis and treatment pathways, including those who take and interpret the images and pathologists who study the biopsies - so not just clinicians and researchers!

 

We heard that there are big differences between early stage prostate cancer and late stage metastatic prostate cancer that has spread to other parts of the body so we won't find one solution or cure.

 

MCRC Director Rob Bristow led the discussion and he kept everyone in touch with reality regarding some of the ideas generated, it's important to know our limits and to manage expectations.

 

 

Having a Voice

 

Rather than PowerPoint presentations, this was more like an informal conversation and Rob Bristow made sure everyone had their say - and this included the three of us patients who attended. It was good that we could give the patient perspective as to what we think is important. Someone from radiology thought putting needles into patients isn't good - as a prostate cancer patient I couldn't agree more as I've had various needles stuck in me in various places and some are quite big!

 

As a service user representative you sometimes realise how your life has changed, with us at the town hall that was seeing Professor Ananya Choudhury, who oversaw my treatment at The Christie - rather than being doctor and patient we were now part of the same group looking for ideas.

 

 

Common Language

 

Having attended many events in the past I can understand a lot of the jargon and acronyms, which doesn't help patients who haven't had that experience, but it was good to hear from one of my fellow patients that he was surprised at how much he understood. Credit to Rob Bristow for making sure we could all follow the event. It was really good considering the number of people in the room who are leaders in their field.

 

Now, from experience, I can say these are fantastic events, not only do they cover complicated subjects well but they're patient-friendly and Rob does a brilliant job of keeping it informal and including everyone.

 

Mike 

 


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