I am surprised not to see any mention of the new NICE guidelines on the PAS website. I was a paid up member last year but did not renew membership this year as to be honest it did not seem to offer value for money. Given the number of people who are struggling with inappropriate diagnosis/treatment I would have thought the PAS would be very keen to be involved in creating new NICE guidelines.
I am considering submitting a comment on the proposed guidelines individually but it would be better if the society could comment on behalf of a large number of people.
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jeremycat_
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Please do submit your comments directly to NICE because we will all pick up on different aspects of the guidelines.
Although, the P.A. Society is an international organisation, they have very little funding and volunteers. I am extremely fortunate that I do not live too far away and have strong connections to the locality. So, I have attended meetings and scrawled ten to the dozen when listening to the speakers. Then networked.
Please reconsider re-joining, I know they work extremely hard.
Your membership fees is being used ‘behind the scenes’ at all different levels. From a biochemical point of view to Governmental.
Plus, they are the ONLY organisation that can provide statistics such as delay to diagnosis, treatment regimes. They need your statistics.
At one point in my career, I was a civil servant. So, I generated reports and statistics at Governmental level.
So, thinking along those lines. P.A./B12 deficiency :-
Your medical notes are auditable = National Audit Office.
You are allowed access to your medical records = Information Commissioner’s Office.
People will become too poorly to work or study = Department of Works and Pension.
The ability to work, study is reflected further = Office of Fiscal Studies.
People may be unable to drive as a consequence = Driver and Vehicle Licensing Agency.
People may die as a consequence = Office of National Statistics.
I stated to one doctor, ‘My first love was Maths’
For fun: If you put Maths in motion, it’s physics and that’s a Force to be reckoned with. 😂
as Narhwal10 says, one of the most important things PAS does is provide a cohort of patients with PA, suspected PA, malabsorption issues, B12 deficiency symptoms to researchers. We are known for our quality contributions to research and for funding and supporting papers which are valuable to moving things forward in terms of the science, psychology and day to day living with experience of PA. Becoming a member means you will get the invitations to take part in surveys and research (not just UK based) and it is only credible research that changes opinions and attitudes in government and healthcare.
Hello, we've set up this account because we are aware that many here are not members of the PAS. We have submitted a response to the NICE guidelines. We spent hours and worked with experts to represent the best interest of our members in our response. We also received many emails from members and reviewed and incorporated their views. Whilst individuals can also respond, we felt that our time was better spent preparing a scientific and research based answer because as a stakeholder, the Society's views will be published by NICE.
The PAS was instrumental in getting the guidelines commissioned. We do a huge amount of work behind the scenes with a very small team of volunteers. We are totally funded by membership subscriptions and donations. We have a workplan of priorities to meet our goals and mission and to spend our members contributions wisely. Unfortunately things like website, social media and communications and fundraising cost time and money and require more volunteers who stay committed to helping us. At present we focus on conducting research and on lobbying for change. We also provide a help desk, expert witnesses and fact sheets and newsletters to our members.
There is much more the society would like to do. We need members to join and renew and stay with us on the journey to help with that.
There are many social media groups out there which provide information and advice about B12 and PA, some are accurate some are woefully misleading. PAS is committed to being a patient advocacy group and fighting for better understanding of PA, for which B12deficiency is one of the debilitating symptoms.
there are 30,000 posters on this forum which we host and support, if every one of them even donated £1 or $1 we could fund research, overhaul our website, train helpline volunteers, certify expert witnesses. Just think what we could do if even a third of you became annual members! Membership is open to everyone worldwide whether or not you have PA, are a carer, a health care professional or just want to support our cause.
Thanks for your informative response. I will look at rejoining the society.
I think more people might join if there was more attention on B12 deficiency in general rather than just PA. Many people suffer from B12 malabsorption/deficiency due to a reason unrelated to PA and yet the symptoms and treatment are exactly the same (except in the rare case of dietary deficiency).
I am surprised that the PAS website makes no mention of Vit B12 deficiency on its homepage - has there been any thought about making the society more inclusive to those who suffer from B12 deficiency but not due PA?
the Society was set up to focus on people with PA, which was (and still is) misdiagnosed and under-treated. We focus on PA which is a condition which can result in B12 deficiency. B12 deficiency is one of the symptoms of PA but there are other issues if you have pernicious anaemia and raising awareness of these alongside treating B12 deficiency symptoms shouldn't be overlooked.
dietary B12 deficiency is not rare. It is the single fastest growing reason for B12 deficiency as people turn to a vegetarian and vegan lifestyle and because food production processes have started to reduce B12 occurring naturally in our foods. B12 microorganisms are found in soil but grass or outdoor fed animals for meat are very rare nowadays.
PA is an auto-immune condition and requires specific research, auto immune conditions, genetics and familial links all play a part. People with PA tend to have other auto-immune diseases as well. Because the test for PA currently used in the UK (and in most countries) is only accurate in 40-50% of cases, you are right that those with malabsorption issues are likely also to have PA or another medical reason for their B12 deficiency. With a better name we could all come under the same umbrella. What no one yet knows however is whether we are all the same. You could have a malabsorption issue because you had h.pylori infection for example. That might be different than having Intrinsic Factor Antibodies and your long term prognosis might be different even if treatment is the same. Whatever we call *malabsorption of B12* and it goes by different names in different countries ( Addisons, Biermers, Atrophic Auto-immune gastritis) - none of these names adequately describe the condition or even refer to exactly the same thing and further research and understanding as well as education is needed.
We all live with and struggle to get diagnosed, treated or even simple respect from the medical profession. The reality is that all the research papers, medical record keeping and health care professionals know and understand the term Pernicious Anaemia (even if many are not actually anaemic) so we will stick to PAS for now because it is a brand that carries some weight in the B12 community of experts and researchers worldwide.
PAS works closely with a number of B12 charities and organisations who focus on B12 deficiency, as well as universities, research experts in B12. PAS was instrumental in supporting CluB-12 a world-wide group of research scientists when it started up. We meet monthly and some cases weekly with these groups which are based all over the world. We recently contributed to a bid for research funding with a group of these organisations and we were happy for that to be research into B12 not just PA, in fact I personally suggested to the team it was wider than PA! We currently support two research students one of whom is working on B12 more generally than PA. However we remain of the view that our focus as a charity is the medical condition known as Pernicious Anaemia
We recognise that all of these organisations and individuals who are banging the B12 drum have a role to play and by working together we can all do our thing to raise awareness while ensuring that our own message and things that are important to PA patients are not drowned out by a general B12 deficiency message.
I'm sorry that you find our website doesn't cover what you are looking for. We try! There are literally 4 of us all with other jobs outside of our volunteer work doing everything that needs to be done to run a charity. We have some very valuable helpline and support group volunteers who give up their time and energy often dealing with some heart-breaking stories. All of us have pernicious anaemia too! We have to pay for day to day charity running like insurance, telephone systems as well as specialist services like website updates, newsletter production, social media, fundraising bids in order to remain a competitive voice in the world of B12 and to ensure that we are a credible organisation respected by the health care profession and researchers. We have to cut our cloth accordingly to do what is best for the members.
To answer your specific question we certainly do not exclude any one who has a B12 deficiency and many of our members do not have a formal diagnosis of PA. There are other organisations with focus on general B12 deficiency some of whom also mention PA and other malabsorption reasons. Our focus and position is research and helping people with the medical condition currently known as PA.
I promise my answers on other topics about the charity will get shorter over time!
PASComms, thank you for all that you do. It is very much appreciated. As someone that was lucky enough to receive B12 injections for 7 plus years. Then, suddenly be told I am no longer allowed to have them, “as it’s probably down to being a vegetarian” (I’m not), and completely diet related, I can say with heartfelt sincerity all research, and awareness raised is invaluable. Thank you for being a voice for us all; for imparting vital information to help develop understanding and getting the message across to those that need to listen.
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