news and updates

Tomorrow is the start of a round of meetings that will centre on getting the way Pernicious Anaemia is treated changed. The first meeting is with the Royal College of Pathologists and on Thursday we are back in London for a meeting with the Medicines and Healthcare products Regulatory Agency (MHRA). Next month a meeting has been arranged with the Director of the British National Formulary (BNF) and one of her colleagues.

What do we hope to achieve from these meetings? Well we could simply demand that the current treatment regimen be changed – but experience has taught us that wouldn’t get us very far at all. As a representative of a patient support group (of over 10,000 members) the only thing that we can be justified in doing is raising awareness of the problems encountered by our members. And here’s some statistics from our paper published in April that was the result of an analysis of our survey of nearly 1,500 members:

64% of patients with Pernicious Anaemia are Unhappy with their treatment

Words Used By Patients to Best Describe Their Care:
Very Poor (20%),
Inadequate (18%),
Good (10%),
Poor (10%),
Undecided (9%),
Reasonable (8%),
Adequate (8%),
Very Good (7%),
Excellent (3%)
Unreasonable (2%)

We don’t know what the outcomes of the meetings will be – but what we do know is that this is the beginning of what will probably be a very long process.

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