On 10 February 2020 the “Happy 1/2 Hour with an Expert in Haemophilia Care” focused on how to become an expert patient! On a rare occasion we had invited two experts to contribute to this session – two expert patients, Mr Miguel Crato from Portugal and Mr Jim O’Leary from Ireland.
Of course, this discussion needs to define an expert patient in the first place, so both of the guests answered the question – Who_is_the_expert_patient?
Further, the discussion led to such important topics as how to communicate with the health care providers at your Haemophilia Treatment Centre (HTC) to receive the best possible care for you and the others in your community. But not only that, also it was discussed how to communicate with the healthcare providers that are not specialised in haematology? Jim O’Leary presented his three-step approach on How to communicate with the HTCs, which was then further expanded into a discussing, whether this would be applicable in all contexts and all cultures.
Also Miguel had prepared three steps on How to successfully communicate with your NMO. These three steps contained some very useful practical advice and lived experiences on how to create something useful and sustainable for your inhibitor community.
We send a million thanks to Jim and Miguel for the lovely and very educational chat!