Wednesday, 18 September 2013

Long Term Conditions

I am a passionate advocate for meaningful patient involvement in all aspects of health care.
With conferences as the melting pot of new ideas, it seems only right that contributions from patients themselves are added as essential ingredients into the melting pot. I have commented on this after attending most conferences - where were the patients?
One new idea for involving patients in conferences is being tested at the NHS England/UCL Partners Future of Health conference in October. A Patient Jury, a panel of patients and carers, will provide comment and feedback on the presentations and workshops through the two days. I am excited to have been asked to be part of the Jury and am hopeful that it is going to provide a model for patients and carers to be integrated into the discussions at conferences. I will be posting a follow-up blog on my experience of being on the Patient Jury - to pass my final verdict!

Monday, 16 September 2013

Hearing it for the first time all over again

I live with several long term health conditions.

I am going to be living with these conditions for longer than it takes to get to the edge of the solar system (according the recent NASA Voyager announcement at least!)

Whilst I know that my conditions are neither terminal nor degenerative, I know that I am going to live with them for the rest of my life

I introduce myself to students I am teaching, fellow patients I support via Expert Patient Programmes and delegates I talk to at conferences as someone who lives with long term health conditions. 

It is even on my Twitter bio.

So why, when my doctor mentions that my conditions are "long-term" or that I am going to having to face this for the rest of my life, does it feel like he is telling me for the first time again?! Why does my heart break all over again, and all those emotions come flooding back?