An Inspirational Kidney Cancer Patient Day…

It was an inspirational day last Wednesday at the James Whale Fund for Kidney Cancer’s Patient Day.  I’ve never been to a patient day before and I wasn’t sure what to expect really.  I knew it would be a great opportunity to meet people in a similar position and a great day to network in general.  All of that turned out to be true.

What really got me was that the specialists that turned up to talk were so willing to answer our questions, and there were a lot of questions.   It must be hard and I was especially impressed that they’d given up their time like this.  It was insightful.  If the Q & A session at the end had been allowed to go on I’m pretty sure we’d still all be there.

We also had an inspiring talk from the Kidney Cancer of Canada people (Debbie and Tony), what they have achieved in a short space of time is astounding and it shows what can be done if we all work together.  The biggest lesson for me from the whole day is that if all the different Kidney Cancer groups were to come together in the UK then we could achieve even more.  One of my biggest concerns is that in the UK we are a bit diluted, but we are gradually bringing organisations and people together and the Patient Day was a great example of this.  My belief is that we’ll get things done quicker that way and make a bigger impression.

I took about 6 pages of notes during the day but I wont start trying to detail them out because I know the James Whale Fund will be sending out a newsletter with the same information.

For me I just wanted to say a big thank you to the team that put this together, it all went off without a hitch and was well organised with a good balance of speakers and topics.

What have I learned? Well I know we still have to fight on for the right to the drugs that are so badly needed and yet are still denied by NICE.  If the oncologists that came along to our event feel they are not listened to then it’s even more important that we all join together in the UK and take this to NICE directly.

This blog wont do the day justice I know, but my hope is that another one will be held soon.  I came away feeling that this was the catalyst to something new and exciting for Kidney Cancer in the UK, the more we bring people together like this the more we can achieve.

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Posted under Andy Thomas, General, Patient Day 18thNov2009

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