Pernicious Anaemia Society

"NHS Failing Our Members"

DATE: 19/10/09
TIME: 10.am
EMBARGOED UNTIL: 10am 19/10/2009
DOWNLOAD PDF: 20091019-01.pdf

Further Information from M. Hooper. 01656 724163/720187 07545897608

The Chairman of the newly formed patient group and charity The Pernicious Anaemia Society claims that the NHS is not meeting the needs of all patients who suffer from Pernicious Anaemia.

“There is a desperate need for the diagnosis and treatment of Pernicious Anaemia to be reviewed. Thousands of people remain undiagnosed because of an antiquated diagnostic technology that needs to be replaced” says Martyn Hooper, the founder and chairman of the society.

“And the treatment of the disease also needs updating. Our members are receiving less treatment than they did fifty years ago and when they ask for more frequent injections of a harmless vitamin they are almost routinely being offered anti-depressants. Then they are forced to either buy the vitamin replacement from the internet or in mainland Europe where it is available over the counter and self inject without the knowledge or consent of their doctor.

“The cost of administering the current treatment regime is estimated at over £20million per year. If the NHS provided a more pure form of vitamin B12, that is available in the private sector, patients could administer their own medication and save the NHS millions of pounds every year” says the fifty year old former lecturer who was forced to abandon his career due to him developing Pernicious Anaemia six years ago.

The Pernicious Anaemia Society is the only organisation in the world that provides information, help and support for patients with Pernicious Anaemia. It has over three thousand members of whom around 30% are from outside the U.K.

“We are uncovering a whole host of problems associated with the symptoms, diagnosis and treatment of the disease that is causing unnecessary suffering and is burdensome to the NHS and the economy. We need an urgent Review of the symptoms, diagnosis and treatment of this condition” says Martyn.

It is estimated that over half a million people suffer from Pernicious Anaemia in the U.K. There is no cure for it and patients are kept alive by them receiving injections of Vitamin B12 every three months.