We’re GDPR Compliant!

On the 28th May this year organisations such as ours were required to have policies in place that would ensure that the data we hold was secure and protected. The new General Data Protection Regulations (GDPR) aims primarily to give control to citizens and residents over their personal data and any data held must be safeguarded with justifiable reasons for holding that data. There is also the requirement to produce a plan that would be put into action if there was any loss of data in order to minimise any problems.
We are happy to say that we are now fully compliant and have taken all the measures we needed to ensure that any information we have on our members is subject to strict controls to ensure such data is as secure as it could be.
“We already had a Data Protection Policy” says newly appointed Data Protection Officer Liesel Schwarz, “but we had to introduce several additional measures to ensure that we were compliant with the new regulations”.
One of those ‘additional measures’ was to give all of our members the opportunity to ‘opt in’ or ‘opt out’ of receiving any communication from us. To this end we emailed everyone on our database asking them if they still wanted to receive The PAS quarterly newsletter and other bulletins from us and if so, actively ‘opt in’ so that we could email them those bulletins.

Receiving the PAS Newsletter and other PAS Emails

To update your email preferences you can click the sign up button below, fill in the details and check the boxes of the emails you would like to receive from us. You can choose to receive one or more of the quarterly PAS Newsletter, Research & Survey Bulletins and Support Group Meeting Invitations (you can select one or more groups).

If you haven’t done so recently, then please update your settings so we can continue to send you the news you are interested in! Thank you!

You can review your privacy/membership details at any time by logging into your Membership account.
Full details of our Privacy Policy can be seen here.

NICE UPDATE

We understand that the National Institute for Health and Care Excellence (NICE) is still in the process of considering the application we made to them for them to produce a Guideline on Diagnosing and Managing Pernicious Anaemia. We know that the British Committee for Standards in Haematology (BCSH) were asked by NICE to consider issuing a new set of their Guidelines but, as they had nothing to add to their last guideline from 2014, they told NICE that they had no intention of producing another of their guidelines. You may remember that the BCSH’s Guideline from 2014 states that because the currently used test to determine the B12 status of the patient is so unreliable, they recommend that ‘if there is discordance between the test result and the patient’s symptoms ignore the test result and treat the patient to avoid any nerve damage’. The Guideline also states that the test result for the Intrinsic Factor Antibody is also seriously flawed and that patients who test negative for the antibody will have ‘negative intrinsic factor antibody pernicious anaemia’.
The ‘Active B12 test’ is now available in several NHS hospitals but we not are aware if it is being used. Apart from this development, no further improvements on how patients with Pernicious Anaemia are diagnosed have taken place, so it’s no wonder that the BCSH referred the matter back to NICE.
We are still in communication with NICE about this matter and hope to have some positive news soon.

WE’RE NOW RECRUITING!

We are a victim of our own success! With an ever-increasing membership and lots of activity at international, national and regional levels, the work of the society continues to increase. And we need help.

In order to continue to provide the services that we do and grow to meet the needs of patients in the future we need funds. We are now very keen to recruit a volunteer Grants and Bid writer who can help us meet the challenges of the future. If you are an experienced Grant and Bid writer and can spare time to apply for large grants on behalf of the society we would love to hear from you. Or maybe you know someone who is experienced in this highly specialised work who would be able to help the society. If you have a background in writing bids, or know someone who would be happy to help us, please get in touch.

Similarly, we are looking for a Social Media Manager who has extensive knowledge of and experience in working with the various social media platforms that are such an important feature of modern life. We are conscious that we are not using social media platforms as well as we could to keep our members up to date with what’s going on and so, if you have some time to spare, and you would like to help the society to increase its social media presence please contact us.

To increase our so much needed member support we are looking for a Members’ Service Manager. Ideally you would be living near our office in Bridgend, but it is also possible to work from your home. Do you have a very good knowledge of Pernicious Anaemia and all that’s involved and/or experience with phone/email support and would you like to help our members with advice and support?

EXCITING PRELIMINARY RESEARCH FINDINGS

The research programme that is exploring why some patients need far more frequent replacement therapy injections than others has completed its preliminary round and the two research leads have reported some unexpected and exciting discoveries that will hopefully prove the basis for more extensive research into this highly important aspect of Pernicious Anaemia.
Three groups of research participants were asked to provide stool and urine samples. The three groups comprised of fifteen patients who were perfectly happy with receiving an injection of B12 every three months, fifteen who needed much more frequent injections and the third group comprised of fifteen normal people who had healthy B12 status. Each group had the molecular make-up of their stool samples analysed and then the bacteria make up was examined.
The group who needed more frequent injections showed abnormal molecular make-up, which was not apparent in the other two groups and they also had differences in their bacterial content.
We cannot say any more but while the bacterial differences were hoped for, the molecular make-up was completely unexpected and has opened up a whole new area of research. Similarly, the bacterial differences also lay the foundations for much more intensive investigation.
The society will continue to work with the two research teams and will be co-applying for research grants in the near future.
Our thanks to all those who took part in the research – your help has not only proved to be helpful but will also help unlock one of the most intriguing questions associated with Pernicious Anaemia – why do some people need more frequent treatment than others?

FORTIFICATION OF FLOUR WITH FOLIC ACID

The Committee on the Toxicity of Chemicals in Food, Consumer Products and the Environment (COT) which is part of the UK’s Food Standards Agency, acts as the secretariat that advises the UK Government on all manner of subjects including what should be the ‘Upper Tolerable Limit’ of fortifying flour with folic acid.
It may come as some surprise to you that the UK already fortifies flour with Thiamine (vitamin B1) and Niacin (vitamin B3). It doesn’t add folic acid although around 20 countries in the world do. Thus the ‘upper tolerable limit’ of folic acid in flour is very low and there are calls for the UK to start fortifying flour – that is to say, the upper tolerable limit should be raised.
Folic Acid added to flour reduces, quite considerably, the number of babies born with Neural Tube Defects such as Spina Bifida. However, it can and does interfere with detecting any vitamin B12 deficiency. And if a patient is deficient in folate and B12 and the folate deficiency is treated with folic acid and the B12 deficiency is left untreated, then it makes treating the B12 deficiency impossible in some cases due to something called ‘the folate trap’. Because of this, this society has long had a policy relating to the fortification of flour with folic acid. We are not against the fortification of flour with folic acid because there are obvious benefits for the future population. However, what we want is problems with the current tests to determine any B12 deficiency to be addressed before any further fortification takes place.
The COT contacted this society asking for any information that we had on how B12 was affected by folic acid fortification. The committee also asked our opinion on how effective the current assays were to determine B12 status. These questions were so fundamental that the Chairman of the society, Martyn Hooper, produced a short report for the committee that was so well received that he was invited to address the committee at their next meeting, which took place earlier this month (July 2018). Following an extensive question and answer session the committee decided not to increase the tolerable upper level of fortification ‘until better tests were introduced to determine the B12 of individuals’.
At the meeting a senior civil servant from the Dept. of Health asked Martyn for his contact details so that further consultation could take place.
“I’m hoping that the Dept. of Health will put further pressure on decision makers in Healthcare to introduce better tests for detecting a B12 deficiency and whether that deficiency is then caused by Pernicious Anaemia” said Martyn who is now busy liaising with the Dept. of Health and other bodies in relation to this.

We are aware that many of our members have problems getting diagnosed and treated because their GP needs more information about the condition, especially where there is discordance between test results and the patient’s symptoms. Often the GP will seek out an expert on PA but will be unable to find anyone. Well, we have now been in touch with a practicing GP who has completed extensive research on various aspects of the disease and who will be glad to speak to any interested doctor who would like more information. Please telephone the office between 8am and 12 noon any Tuesday, Wednesday, Thursday or Saturday for more information.