Tomorrow is the start of a round of meetings that will centre on getting the way Pernicious Anaemia is treated changed.  I am in London meeting with the Royal College of Pathologists and on Thursday I am back in London for a meeting with the Head of Self-medication and one of her colleagues at 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 I hope to achieve from these meetings?  Well I cannot request that the current treatment regimen be changed.  That is now what I can do.  As a representative of a patient support group (of over 10,000 members) the only thing that I 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%)

I  have to be at the meeting tomorrow at 10am and so it’s a 4:30 start for me.  I will let you all know the outcomes of the meetings – fingers crossed.