Neutropenia is a rare and debilitating condition for many sufferers. It is often misunderstood by medical professionals. Research currently occurs in the US, with the Severe Chronic Neutropenia International Registry (SCNIR) as the official source of information and guidelines re diagnosis & treatment. Most professionals who are placed to diagnose in the UK have never seen such guidelines. Patients are often misdiagnosed as being 'well' due to the lack of knowledge leaving them at risk of sepsis which can be fatal.
We want to the government to ensure that all haematology staff are given more training specifically in neutropenia and to provide more support to sufferers of this often mismanaged condition by:
-Increased partnership working with the SCNIR & NICE
-More training relating to the condition for haematologists
-Funding to help support groups to be set up across the country to help improve knowledge, reduce isolation for sufferers, their friends & family..
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UK Neutropenia Support Group
Sunday 30 March 2014
Tuesday 31 March 2015