Cancer Research Share Event

Many charities and NHS divisions ask for patients and carers to share their experiences via a presentation, a video or a talk to staff.  The premise is always that this helps their staff focus on why they’re doing a job and perhaps understand aspects of their services from a ‘user’ perspective.

I was asked to speak this afternoon at Cancer Research to a group of new members of staff who’ve joined within the past 3 months.  A mixed audience of all levels of staff, some of whom will be working in a clinical setting or a lab, others in an office, some on fundraising teams and others within the media team.

I prepared what to say.  The outline of what I wanted to say was:

  • Introduction and thank you for invitation
  • Who I am and my journey
  • Why you’re doing what you’re doing
  • Thank you
  • The future

Sounds simple, doesn’t it?  I’ve had many sleepless nights thinking about that I’m to say, how it will be received and if I can say it at all.  It’s hard to talk about some aspects as I’ve safely stored those in the mental ‘do not revisit’ box and need to dip in and get it out.  I also know that the patient experience is so valuable and even the heartstring stuff is useful to ensure that people remember why they are doing the job they’re doing.

So when the event was cancelled this morning I’m not sure if it was relief or disappointment I felt.  Certainly I wished I could get back that missing sleep from the past few nights!


2 thoughts on “Cancer Research Share Event

  1. Gosh I am amazed they weren’t queuing round the blocks, seems ruff and ungrateful…there is far too much of such stuff in life! My cynical self wonders if a bloke would have been treated like that? Is that too cynical? Xxxx

    • It’s an odd one. I’ve been asked to speak at a few events for different charities and organisations. I know how important the ‘real patient voice’ is however know also the toll it takes on me/other patient/carers in doing so. xx

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