July 2018 – Volume 2 Issue 15
In this Newsletter:
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
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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.
ADVICE FOR GPs
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.
New Support Group
A new support group was started by our member Jean in the West Midlands. The first meeting will be on September 29th in Wolverhampton and Martyn Hooper will be the guest speaker. Interested to join? Email Jean via the details on the Events page.
The most common complaint received by the Pernicious Anaemia Society relates to the treatment of the disease.
It is time for the ‘one-size-fits-all’ treatment to be reappraised.
This conference will highlight the Good, Poor and Unacceptable Treatment encountered by patients with Pernicious Anaemia.
MEMBERS’ INFORMATION DAY
We are holding our first Members’ Information Day on Saturday 12th January 2019. The venue is yet to be confirmed but preparations are underway to bring members together to meet the researchers working with the society, meet the Trustees of the society and perhaps more importantly to meet other members of the society who understand just how difficult it can be to manage Pernicious Anaemia.
We intend to hold an ‘ask the panel’ session where you will be able to ask the panel of researchers questions that you would like answers to relating to Pernicious Anaemia – and we all know that there are many questions that don’t yet seem to have any answers. The panel will then retire and consider their answer.
This break will bring the opportunity for members to attend a number of workshops that will be organised. Again, we are still making the necessary arrangements, but we already know there will be a Support Group workshop where existing Support Group Leaders can meet with other leaders and where members who are considering setting up a local support group can get information and advice on how to go about it.
There will also be a ‘younger members’ group where those under the age of 25 can meet others of their age to get advice and support.
Another workshop will provide you with the opportunity to take part in the new documentary. If you would like to have your story recorded on camera then this will be your opportunity to tell how late diagnosis or poor treatment has affected your life.
There will be other workshops on the day before a plenary session where the medical and health professionals will hopefully provide answers to your questions that were submitted earlier in the day.
Please refer to the website, social media and/or this newsletter for further details – but put that date in your diary!
OUR SUPPORT GROUP NETWORK GROWS
Our network of local support groups continues to grow, and we are delighted to announce that we now have a coordinator who will provide advice and guidance to existing group leaders and potential leaders.
“I am pleased to be appointed as the Support Group Coordinator” says Lynn Holloway who will be the first point of contact between the regional groups and the society.
“I organise the Leicester Support Group and have learned the hard way the do’s and don’ts of setting up a group and I want to share my experiences with others and also learn from others how what they have done and how they have met any challenges” she says.
We are always grateful for the efforts of those who complete events to raise funds for the society and we are genuinely surprised by some of the activities you get up to. However, it’s often the case that the first we hear about any fundraising that has taken place is when we receive notification of payment. Please let us know if you are entering an event to raise funds for the society. We are happy to support you by publicising the event to increase support and we can also provide you with t-shirts or running vests that have our logo and we also have posters that can advertise your event.
Contact us at: firstname.lastname@example.org
STOMACH CANCER & PERNICIOUS ANAEMIA
Good luck to Carrie-Anne Carr who is raising money to help fund research into Pernicious Anaemia and Stomach Cancer.
It’s well known that patients with Pernicious Anaemia are more likely to develop Neuro Endocrine Tumours than the general public. Mostly these small tumours are benign but sometimes they can turn nasty, which is why we are campaigning to ensure that patients with Pernicious Anaemia receive regular endoscopies.
However, much more research needs to be undertaken into this whole area and we are happy to support Carrie-Anne in her fundraising efforts. Good Luck!
We have been successful in being awarded a Silver Bond entry into the 2019 London Marathon. We have a list of runners who want to run the marathon for us and top of the list is Elise Dyer who is the lucky recipient of the Silver Bond Entry and will be running for us.
Elise is now busy training for the event next Spring and we will bring you more details in the next newsletter.