It was back in 2006 that the Pernicious Anaemia Society was entered onto the UK's Charity Commission's Register and the society became a Bona Fide Patient Support Group with the aim of providing Information and Support to patients who have Pernicious Anaemia and their families and friends.
The original remit of the society was to provide newly diagnosed patients with a Plain English explanation of their condition. However, from very early on in the life of the society, it became clear that there were serious issues surrounding the way in which patients are diagnosed and treated. And as a consequence the remit of the society was expanded so that now our main aim is to raise awareness of these issues among health professionals with the one single objective of getting the way in which Pernicious Anaemia in particular and Vitamin B12 in general is diagnosed and treated thoroughly reviewed.
It’s a difficult job. We are competing with often big, well-funded charities who are campaigning on similar issues. But, using research and providing accurate data we are getting our voice heard – though there is still a long way to go.
This conference will provide four main opportunities.
Firstly, it will give you the opportunity to hear about the progress of research programmes that are associated with the society. Lead Researchers will provide you with a 10-15 minute ‘plain English’ presentation of what they are seeking to do and what they have discovered so far. This will be of interest to our members and other medical professionals who will be at the conference.
Secondly, the conference will provide a forum whereby clinicians and other medical professionals can not only talk with each other but will be given a unique opportunity to hear of patients’ problems in being diagnosed and treated. This channel of communication is so critical in making medical professionals aware of the problems faced not only by patients but also their families and friends.
Thirdly we will be inviting other organisations to exhibit their work. We know that patients who have Pernicious Anaemia will often have other co-existing conditions such as Thyroid and Tinnitus. You will have the opportunity to talk to other patient support groups that will help you to manage your conditions better.
Finally, and perhaps more importantly, this conference will provide you with the opportunity to talk to other sufferers where you will be able to share information about coping strategies, additional treatment etc. We know that one of the worst aspects of Pernicious Anaemia is the feeling of isolation that patients feel believing that nobody really understands the problems they face on a day to day basis. Talking to other patients will give you the opportunity to realise that you are not alone.