Letter for you to forward to your Assembly Member

October 2019

 

Dear Assembly Member,

I am writing to ask for your help.

What is the problem?
It is now generally accepted that between 10-12% of the population of the U.K. is deficient in Vitamin B12 – that’s around 350,000 people in Wales.

What are the Causes of Vitamin B12 Deficiency?
The biggest cause will be because of an autoimmune disease called Pernicious Anaemia. This means that the patient will be unable to absorb the essential vitamin from food. The vitamin is found in any animal products such as meat, fish and dairy. So, what’s the Problem?

There are several problems:
1. Symptoms: the symptoms of B12 Deficiency are wide ranging and often associated with other diseases or simply advancing age. They include; Constant Tiredness, Fatigue, Brain Fogs, Behavioural Changes, Memory Loss, Irrational Behaviour and a wide range of Neurological issues including Pins & Needles, Numbness and Balance Problems.
2. InaccurateTest#1:The current test used to determine the Vitamin B12 status of people is not very good at all. In fact, the latest guidelines from the British Committee for Standards in Haematology tell doctors that if the patient has the symptoms of B12 Deficiency and there’s ‘discordance with the test result’ then they should ignore the test results and treat the patient to prevent any serious and irreversible nerve damage.
3. InaccurateTest#2:The test to determine whether any deficiency is caused by Pernicious Anaemia is seriously flawed and now discredited. The new Guidelines state that if the patient tests Positive for an antibody that causes PA then the patient will have Pernicious Anaemia. If he or she tests negative then he or she will have Negative Antibody Pernicious Anaemia.

What Can You do?
We have been successful in getting NICE to appreciate that there is a real problem here that needs to be addressed by them issuing a Guideline on Diagnosing and Treating Pernicious Anaemia. However, they have yet to commission the development of a Guideline into their work-stream. We want your help to put pressure on NICE to urgently commission the guideline into their work-stream. To this end you could:

  • Write to Dr. Paul Chrisp, the Director of Guidelines at NICE asking him to urgently address this problem; Paul.Chrisp@nice.org.uk
  • Ask the Health Minister to write to Dr. Chrisp .
  • Ask for a Debate in the Senydd to discuss this issue and identify ways in which this major health problem affecting the whole of Wales can be addressed.

Who are We and What do We Do?
We are the only registered charity for people with Pernicious Anaemia in the world. We have nearly 10,000 members and we grow by just over two new members every day which is surprising when you realise that there are so many problems getting diagnosed with the disease. 33% of our members waited between 3 and 5 years for a diagnosis.
14% of members waited over ten years. This costs the NHS many millions of pounds every year in repeated GP Consultations before the patient finally gets a diagnosis – misdiagnosis is rife – Depression, MS, CFS/ME etc. Left untreated, B12 Deficiency leads to serious and irreversible nerve damage.

 

Registered Charity No. 1147839

 

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