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 Guideline on the Diagnosis and Management of Pernicious Anaemia.
This decision fulfills the main aim of the society which was to get the way in which Pernicious Anaemia is diagnosed and treated thoroughly reviewed. The NICE Guideline will hopefully achieve this aim.
“When we embarked on our mission to get the problems with the diagnosis and treatment of Pernicious Anaemia thoroughly reviewed it was obvious that we would have to work with Health decision makers to achieve our aim” says Martyn Hooper, Chairman of the society.
“Thankfully there is an organisation in the UK which would provide the means to bring about that review”
“It has been twelve years since the society was registered as a charity and in those twelve years we have provided information, advice and support to our members on a day-to-day basis. But always in the background was the work to get the problems with the diagnosis and treatment thoroughly investigated. We have worked with the team of professionals at NICE to ensure that our request was taken seriously, established relationships with decision-makers and provided evidence and other information when asked” he says.
It will take NICE more than three years to produce the Guideline, and, because NICE is patient-centred the society will play an active role in the formation of the new Standard. As well as involving patients in the process, academics, medical professionals and clinicians will all be invited to contribute.
“We have an enviable list of contacts who are experts in their fields and who form our ‘round table’ of professionals” says Martyn. “These contacts will be passed to NICE who will invite them to take part in the formation of the Guideline.”
This is a serious development which will hopefully reduce the time taken for patients to be diagnosed and ensure adequate treatment. We would like to thank all of those who have supported us over the past years. We’ll keep you updated on the development process.