Things are really starting to get busy with the Awareness Week.
As well as arranging meetings with various politicians and civil servants, today sees the begining of our media campaign to raise awareness among journalists from all types of media of the problems that we, as patients, face.
The media campaign has not been thoroughly planned because we simply do not have the financial resources or the people resources to launch a fully integrated comapaign. Instead we are relying on one member of the society who has experience in presenting both television and radio programmes to use her contacts to promote our cause. Fatima, for it is she, will be using daily press releases to entice journalists to air our grievances and the first of those press releases can be found here. I will endeavour to place copies of the press releases here as they are written.
If any of you can help us to promote our cause by agreeing to speak to journalists please contact me in order that I can take your details.
DATE: 25/09/09 Time: 10.am EMBARGOED UNTIL: For Immediate Release
Call for Review into the Treatment of Pernicious Anaemia
The Pernicious Anaemia Society, a registered charity, has called for an urgent review of the treatment of Pernicious Anaemia.
“The most common complaint made by our members is that they are not given an adequate treatment regime based on the individual patient’s needs” says Martyn Hooper, the founder and Chair of the society.”
The treatment of the condition is usually a replacement therapy injection of vitamin B12 every three months. “This is not enough for the vast majority of our members”, says Mr. Hooper. “And when doctors refuse to prescribe a more frequent treatment regime our members are forced either to suffer needlessly or buy the injection over the counter in mainland Europe and then self-inject without any medical training and without the knowledge or support of their G.P.” he says.
Another option for members who seek more frequent injections is to turn to the private sector where a purer form of the vitamin is available that is injected just below the skin. “Members who have turned to the private sector are able to self-inject twice a day and not have to wait three months for an injection” says Mr. Hooper.
If left untreated, severe and permanent damage to peripheral nerves and to the central nervous system can result. Lack of adequate treatment, based on the needs of the individual, means the patient often struggles to lead a normal life and as a result problems arise with work and family life. Changing the way in which the condition is treated by allowing the patient to self inject rather than take up the time of a nurse who currently administers the treatment, would save the NHS over £20 million per year the charity claims.