The Pernicious Anaemia Society, based in Bridgend, South Wales, has seen an increase in support calls from members during the COVID-19 Pandemic, who say they have been experiencing serious issues obtaining their regular treatment.
Pernicious Anaemia is a life-long condition for which there is no cure. Sufferers cannot absorb Vitamin B12 from food and instead rely on injections of Vitamin B12 to stay alive. The Pernicious Anaemia Society, that is based in Bridgend, South Wales, has been inundated with telephone calls and emails from patients who’ve been told that because of the risk of cross-infection during the pandemic, their treatment will be stopped.
Treatment Issues during COVID-19
“The whole issue has been exacerbated by false facts and ignorance at all levels” says the society’s founder and Chairman Martyn Hooper MBE.
“At the start of the pandemic there was a guideline issued that wrongly stated that patients could store B12 in their liver for a year, or maybe two years. This led many doctors to believe that stopping injections would do no harm to the patients; thankfully the Pericious Anaemia Society met with the writers of the guideline and pointed out the error. The result is that a new guideline was issued that stated that patients should be interviewed by telephone on the day that their treatment is due and if he or she has any of the symptoms of the virus they should self-isolate and wait until they are symptom-free before they receive their injection” he says.
Unfortunately, says Martyn, far too many GP practices across the country are either unaware of the guideline or are ignoring it.
And to make matters worse there are other guidelines on treating Pernicious Anaemia during the pandemic – Clinical Commissioning Groups, Royal Colleges, Government Departments, Individual Practices, Trusts are some of the groups issuing guidelines and all are different.
“No wonder there is so much confusion and lack of standardisation,” Martyn says.
The Pernicious Anaemia Society is the only registered charity for patients with the disease. It has around 10,000 members from all over the world and has uncovered serious problems with the way in which the disease is diagnosed and treated.
The problem with diagnosing the disease starts with the symptoms which are often associated with other diseases. Constant Tiredness, Shortage of Breath, Sudden Mood Changes, Irrational Behaviour, Memory Problems etc. are just some of the most common symptoms. And if the doctor suspects the patient may be suffering from Vitamin B12 Deficiency the test to evaluate the B12 levels in patients has been found to be seriously flawed – but remains the front-line test used by doctors.
And even if the patient is identified as being deficient, the test to determine whether the cause is Pernicious Anaemia is also flawed – with new guidelines recognising that the patient can have the disease if the test for an antibody is either positive or negative.
A survey of members of the Pernicious Anaemia Society found out that:
- 34% waited up to a year for a diagnosis
- 20% waited 2-5 years
- 10% 5-10 years
- 14% waited over ten years to be correctly diagnosed
Left untreated, Pernicious Anaemia leads to serious and irreversible nerve damage and even death.
In the UK the current treatment is an injection of B12 every three months, but for many patients this isn’t enough and they are forced to buy the injectable vitamin from pharmacies in some countries where it is available over-the-counter, or from internet sources. They then either inject themselves or get a family member or friend to inject them.
“We have been successful in raising awareness of these problems with the diagnosis and treatment of Pernicious Anaemia, and NICE have now accepted that there is a need for a definitive Guideline from them, but that will take four years to produce and until then patients go on suffering from misdiagnosis and under-treatment” says Martyn.
If you are affected
The Pernicious Anaemia Society offers a support hotline for members, regional support groups and patient information, as well as working with the medical profession and the Government to raise awareness and promote best practice. For more information, please visit https://pernicious-anaemia-society.org/