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August 29, 2012
My last post for this blog considered being a “good patient” after learning pretty early on to tolerate whatever managing my heart condition involved.  Besides developing a keen stoicism living with a health condition from birth has had a wider impact.  The combined impact of discrimination, however subtle, being dependent on others to survive and feeling a bit different to the “norm” has lead to a sense of disempowerment about my health.  When we are disempowered we lose our voice. And until recently I pretty much didn’t talk about my heart condition unless absolutely necessary.  I did not feel comfortable questioning my care.  Because I know I am lucky to be here at all.  I don’t think this is apathy.  It is a fear of seeming ungrateful combined with a sense of not having any influence anyway.
 
However, over the last couple of years I have encountered various serious difficulties with my care. Including problems at my local A&E, with GPs and with gaining a referral to the specialist service.  This has caused unnecessary stress and heartache for my family when my heart problems were already providing quite enough to cope with.  I felt pretty angry about this.  And I realized that I am allowed to feel this anger.  So, I felt I had to speak out about the difficulties that adult congenital heart patients face regarding our care.  Not in an unhelpful, finger pointing for the sake of it kind of way but in a this needs sorted out so lets work together and make things better kind of way. 
 
It soon became apparent that one of the main issues in Scotland is the fact that we do not have National Standards for our Care.  We have been given various explanations for this.  But the simple fact is that England and Wales have had standards since 2006, which are undergoing a further review, and we still don’t. I believe that this further disempowers an already disempowered population.  We have no point of reference to back up our voice when we do not receive the care we need.  No guidance to inform our GPs, A&E doctors or other allied health professionals.  It feels risky and uncertain.  
 
So, we have submitted a petition to the Scottish Parliament about this.  Because I now realize that being grateful about the care we receive does not mean that we need to stay silent about the difficulties we encounter.  
 
Please sign our petition.  Anyone from any country can sign it.  And the more that sign it the louder our collective voice 
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One Comment leave one →
  1. vghendry permalink
    August 29, 2012 21:58

    Another excellent blog! I often think medical people overlook the power imbalance and how that makes the patient feel. As patients we need to take more responsibility for our own care, it’s impossible to do this if you feel dis-empowered- maybe the topic for another blog!
    Please sign the petition to show your support for the (approx) 15,600 adults in Scotland born with CHD. http://www.scottish.parliament.uk/GettingInvolved/Petitions/AdultCongenitalHeartScottishStandards

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