The most common complaint received by the Pernicious Anaemia Society relates to the treatment of the disease. It is time for the ‘one-size-fits-all’ treatment to be reappraised. This PAS conference will highlight the Good, Poor and Unacceptable Treatment encountered...
This week we met with a representative from the National Institute for Health and Care Excellence (NICE). The meeting was very productive and positive as we made the case for NICE to produce a Guideline on the Diagnosis and Maintenance of Pernicious Anaemia. Although...
Next Thursday (6th June) we will be attending the Pierhead Building in Cardiff Bay to tell Welsh Assembly Members about the problems we face getting diagnosed and treated. The event is being sponsored by Huw Irranca-Davies AM who is one of the AM’s representing the...
Yesterday we received confirmation from the British National Formulary (BNF) that they have changed their recommended treatment for Pernicious Anaemia without any neurological involvement. It’s only a small change but it’s a big step towards our final goal of getting...
NICE Guideline on the Diagnosis and Management of Pernicious Anaemia Today (17th October) we received an email from the Director of Guidelines at the National Institute for Health and Care Excellence (NICE). They have been formally requested by NHS England to produce...
A new neurological patient experience survey is open, to collect vital information about the experiences of treatment and care, social care and welfare received by people affected by neurological conditions. The survey aims to collect enough data to positively...