Getting Involved

Well my lovely Bloglets,

Back again.  Lucky YOU!  So this time the content was sort of suggested to me.  Obviously I’m more than happy to be writing it, otherwise I wouldn’t be doing this.  Generally speaking, I don’t do anything I don’t want to.  You may have gathered this from me already….

I put this blog in three places.  Here, well, depending on where you are reading this here means where you are rather than where I mean it to be.  So to start again.  I put my blog on my blog blog (katruane.blogspot.com), on Facebook as a note and the Leukaemia & Lymphoma Research website (minus the swearing).   I can’t remember how or when I started posting on the Leukaemia & Lymphoma Research website, or how I came across the charity.  I have been trying to remember and can’t.  Maybe one of you reading this does know.  If you do, could you leave a comment to remind me how it happened?  It’s not important; I’m just a bit bemused as to how it’s happened.

So, Leukaemia & Lymphoma Research.  Pretty obvious why I have become involved with them.  But only in the last few weeks have I become properly engaged (gobby) with the charity.  Their focus, as the name indicates, has been on research, but now, the focus is widening to incorporate the patient. This means they have a survey out at the moment (http://populuslive.spss-asp.com/mrIWeb/mrIWeb.dll) to find out about patient experience and to then implement change where it is needed. 

Listening to patients and what they have to say is paramount.  Patient representatives should be in parliament assisting change because let’s face it.  Unless the politician or clinician has had cancer they haven’t got a fucking clue.  Patients know.  Our experience is priceless and what we say should shape future treatments both in terms of the actually drugs and the interactions between everyone in the health care system - from receptionists through to the top clinicians in the country.  This is why I do what I do. I want to help. I want to make sure that NO ONE experiences the shit that I have, because no one should.

It’s exciting getting involved with Leukaemia & Lymphoma Research now, at the beginning of the patient focus phase.  Last week or the week before I went to a focus group about patient experience and then last night about information booklets.  Obviously I love giving my opinion on things, but I do do it with others in mind and do my best to think of those without a voice. To be able to have the opportunity to input at this stage, to make sure that things are right and as they should be for patients, is crucial.  It is getting involved now that will make a difference and make things better for the next person diagnosed.

It is doing things like this, going to parliament, being on expert reference groups that show me why I was diagnosed with cancer.  I’m not being passive and whinging about everything.  I do whinge, yes, but I also get vocal, in, well I hope, a positive and constructive way.  I do this for all of use, particularly the lost tribe (16-24 year olds).  I do this for those who can’t.  I do this to make a difference.  I do this to help.  I do this to make people aware of what it’s like.  I do this because I can and will continue to do so until everyone gets the treatment they deserve.

With love and hope,

XXX