Last Friday I received an email from a medical professional based in Washington DC who was preparing a presentation on the problems with the diagnosis and treatment of Pernicious Anaemia.  She was asking for some data and any other information I had so that she could include it in her presentation – the only thing was she needed it by noon her time which gave me just three hours to put everything together and send it across.

I received a thank you email and more details of the presentation.  It was so good to hear from somebody else who is engaged in dialogue with decision makers in healthcare.  And it was good to hear how she too had encountered the same obstacles as me in getting to meet the right people and putting the case for a thorough review of how B12 Deficiency is detected and treated.  As I say in my latest book, in order to get things changed there first has to be an avenue of communication established.  Without that communication there will be no understanding of the problems faced by patients in getting diagnosed early and treated adequately.  And in order to establish that communication channel a number of stages has to be gone through:

  1.  Identify the Decision Makers – not easy,  healthcare is a complicated structure with a great number of institutions.  Often any decisions made will only be after a series of vigorous meetings and consultations.
  2. Get past the ‘Gatekeepers’.  This can only be done by establishing credibility – that’s why it was important that the PAS became a registered charity and is supported by various health professionals.
  3. Observe established protocols.  This has been a real learning curve.  Only by using established methods will the message be heard.  It may not be the easiest way to get our message across but it is the only way.
  4. Be Polite.  It’s simply no good going around waving you arms in the air shouting “it’s not fair” because nobody will listen.  It’s important to be diplomatic – and diplomacy is simply an extension of good manners.
  5. Be Patient.  I am, but by goodness it’s trying.  Nothing is suddenly going to happen because of all of the above.

It’s taken ten years to get where we are.  And where are we?  Inside the doors of decision makers (just) – doors that have, for many years been slammed shut simply because I didn’t know how to do this lobbying thing properly.  Progress is slow, but slow progress is better than no progress as the lady in Washington  will attest to.