Last week I was in London (again) for a training session that was for Stakeholders in the National Institute for Care and Clinical Excellence (NICE).

I’m registered as a stakeholder for the following Guidelines:
Depression in adults with a chronic physical health problem: recognition and management
Depression in adults: recognition and management (update 2017)
Depression in children and young people: identification and management (2017)
Irritable Bowel Syndrome in adults: diagnosis and management (2016)
Suspected neurological conditions

It was a very good training day, but what probably stood out for me was the hour-long presentation on the structure of NICE – it’s a big, big organisation.

During a question and answer session I mentioned the fact that there are no NICE guidelines on Pernicious Anaemia and that the latest guidelines from the British Committee for Standards in Haematology acknowledge that there are serious issues surrounding the diagnosis of the disease (though they wash their hands of any issues with treatment) and that NICE Guidelines might be something for the organisation to consider. And this week I received an email from NICE asking for the names of people in the BCSH who would be able to enter into dialogue with NICE with a view to producing a set of guidelines.

So, early days yet, but hopefully another esteemed organisation will be taking a good look at the problems with diagnosis and treatment of PA with a view to sorting out what is undoubtedly a mess. Oh! And yes, I’ll be registering as a stakeholder for any new Guidelines to make sure our voice is heard.