Bringing about change

Bringing about change

30 Jun, 2022

Raising awareness and facilitating communication and research

Bringing about change is the focus of the Pernicious Anaemia Society. To do this, the PAS liaises with outside agencies of various kinds to Raise Awareness of the problems faced by patients in getting a quick diagnosis and appropriate treatment. The work of the Society also involves doing our best to Facilitate discourse between health professionals, health decision makers, researchers and patients to stimulate debate and research.

The NICE Guideline which is currently in development will have to look at the issues raised by the Society, and the numerous doctors, researchers and scientists who are stakeholders will be providing NICE with the information needed to at least signpost the issues that need tackling. Likewise, the success of the Priority Setting Partnership with the James Lind Alliance was also partly a facilitating exercise as it brought together patients, clinicians and other scientists to discuss and identify the top ten ‘uncertainties’ with the way in which Pernicious Anaemia is both diagnosed and treated that need researching.

However, it would be a mistake to sit back and wait for things to happen not only with NICE but also with the research questions. There is always the danger that proceedings will grind on and eventually come to a halt through lack of information or enthusiasm. And so, it will be a busy next 12 months, at least, in doing what we can to make sure that the NICE committee has up-to-date information on the complexities of diagnosing and treating Pernicious Anaemia and facilitating the three research teams that have already formed to provide the answers to the questions identified by the Pernicious Anaemia Priority Setting Partnership (PSP).

Three Pernicious Anaemia Research Teams

The three teams, made up of several experienced researchers, will each be concentrating on issues identified by doctors and patients as needing to be researched.
The first team will be dealing with the number one uncertainty pinpointed by the James Lind Alliance process – ‘Can a more reliable and accurate test be developed to diagnose Pernicious Anaemia?’
The second team will be investigating better treatment of Pernicious Anaemia. The current treatment used is over sixty years old and no alternative methods, including self-injecting have ever been evaluated. Alternative treatments would mean that patients should be able to manage their disease according to their individual needs.
The third team will be developing a Functional Outcome Score. This will allow doctors to evaluate just how each individual patient is responding to their treatment. We know that it is impossible to tell how well a patient is doing by looking at their blood which, after treatment has started, will show high levels of B12 and no anaemia. So, by developing this score that will form part of a Care Plan, the doctor will be able to assess how well the patient is responding to his or her treatment and whether he or she will need more, or less, injections.
All three teams will be applying to the National Institute for Health Research’s James Lind Alliance Rolling Programme for funds to investigate these three highly important themes.
Details of the top ten PA PSP Uncertainties can be found here.

We, as a society have already made some progress – it was after all following a meeting with the Dept. of Health in 2012 that the British Committee for Standards in Haematology produced their Guideline on B12 and Folate disorders that acknowledged that there is a serious problem with the current test used to determine the B12 status of patients, and they state quite clearly that, if there is discordance between the patient’s symptoms and the test result, then good practice would be to ignore the test result and treat the patient to prevent any nerve damage. Yet very few doctors are aware of these guidelines. Similarly, the guideline points out the problem with the test used to find out if any deficiency is due to Pernicious Anaemia (still recognised as the most common cause of B12 deficiency) and that patients can still have the disease even if they test negative for the antibody.

There is, then, acknowledgment that there are issues with the current tests used by most health professionals when dealing with Pernicious Anaemia. But, and it’s a big but, there is still a lot of confusion as to the way forward to ensure better diagnosis of the particular disease called Pernicious Anaemia. That is why the ‘facilitation’ part of the Society is so important – let’s start ‘singing from the same hymn sheet’ to bring about a better diagnosis.

And then there’s the thorny issue of treating the condition. There is great variation in how patients are treated just as much as there is great variation in ideas of how best to treat the problem of non-dietary B12 deficiency. It’s no surprise that eight out of the ten PSP ‘uncertainties’ relate to the treatment of Pernicious Anaemia – it still remains the most common cause of complaint by patients.

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    Have Pernious anemia from my thirties an from time time I have had to have infusions
    Still I get monfly b12 keep level ok.Still have tiredness an fatigue but not as bad as previous.Have lost some now gained some weight back.Eating right,excersize. enough sleep is important; This is what I doing for my pernicious Anemia an it works an wanted to share with other Pernicious Anemia. Readers. D.Patterson.

  2. Deirdre Carroll

    Diagnosed Pernicious Anaemia. After loading dose started on 3monthly B12 injections, started to get tired as before 3/4 weeks after injection, told GP- reluctant, after reminding GP I have family history of PA- injections given bi-monthly. Still only last 3/4 weeks. Weakness on left side, compression of spinal cord, low ferritin, when I questioned low ferritin told ‘its within range and you always have low ferritin’!!!

    I don’t think GPs understand how awful symptoms of PA are or the damage done through lack of treatment, I don’t understand why there is such lack of knowledge as there was more idea of symptoms of PA when my mother was diagnosed in the 1940s, treated with Liver Extracted until injections were introduced Much discussion, research and change is needed starting with NICE and review of blood test range. ‘No point topping up with peterol if the battery is flat’.


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