Autumn 2019 – Volume 2 Issue 20
This conference concentrates solely on the treatment of Pernicious Anaemia. You will hear presentations from professionals with an interest in this field, most of whom have carried out research for or with the Pernicious Anaemia Society. We want the conference to be a forum for the exchange of ideas and experiences – from professionals and patients and we have built-in to the day workshops that makes this possible.
This conference has been made possible by the kind and generous donations from a number of members of the society, we have received no external funding, and I would like to thank those individuals on behalf of all members of the Pernicious Anaemia Society, for their benevolence.
Read more about the conference, the speakers and how to get your tickets here
We’ve had a number of telephone calls from members in the UK who are concerned that if the UK leaves the European Union without a trade deal there may be disruption to the supply of B12 injections. There are only three major producers of B12 in the world; two in China and one in France and so the UK, like all other countries who don’t have manufacturing facilities will rely on importing B12 from either France or China.
It has proved impossible to find out the exact arrangements that have been put in place to ensure an uninterrupted supply of our medicine – but the UK’s NHS and the UK Government have stockpiled medicines to guard against any disruption in the event of a no-deal Brexit. More information can be had here:
The UK’s National Institute for Health and Care Excellence (NICE) produced their Shortlist of Topics that will go forward to have a Guideline either developed or updated. Unfortunately, our topic was not included in the shortlist. There are three stages that all topics go through before becoming a Guideline. The first stage is for a topic to be ‘Proposed’. The current list of Proposed topics, including the proposal for a Guideline on Pernicious Anaemia can be seen here:
A ‘long-list’ is then created from selected proposed topics that go to the next stage – ‘Topics in Development’. At this stage a thorough review will take place into the chosen topic. Topics in Development can be seen here:
Once the Development stage is complete (it takes around three years) the Developed Topic then goes to the next stage which is the ‘Consultation’ stage.
Following the consultation, the topic is once again thoroughly reviewed before being issued as a Guideline.
It took us three years to produce a report that satisfied NICE that there was a need for a Guideline on Pernicious Anaemia, and this time last year our request made it onto the Proposed list. There is, however, still a long way to go. The next thing we need to do is to get NICE to agree to move our topic onto the Development stage – and to do this we need your help.
We want you to contact your local MP and other elected representatives (MSP’s, AM’s & MLAs) and ask them to contact NICE and ask that the proposed Guideline on the Diagnosis and Maintenance of Pernicious Anaemia be made a priority. Letters should be addressed to:
Dr. Paul Chrisp
Director of Guidelines
10 Spring Gardens
You may remember that a year ago we announced that we would be using some of the money in our Research Fund to sponsor a MSc student at the University of Kent. The thesis has now been completed by Shun Chang – “Cobamide extraction procedures for analysis of tissue and microbiome samples”.
The basis of the research was to try to understand why some patients need more frequent B12 treatment than others. Here’s what the summary says:
“The inconsistent differences in the distributions of these analogues, could explain why vitamin B12 deficient patients can develop different abnormalities and respond differently to treatments. Thus, a deeper understanding towards these lower ligand analogues will expand the potential targets for treating diseases associated with cobamides”.
This is one very small step, but a significant one, that helps understand why some patients with Pernicious Anaemia need more frequent treatment than others. The author thanked the PA Society for their support.
New Support Group
Please let us know if you would like to attend one of these meetings by sending an email to the event organiser. Their details can be found here These meetings are a great way to meet fellow sufferers and make new friends.
Want to make sure you will receive invitations to upcoming meetings in your are? Update you email preferences here
Following a wonderful response to our social media posts for London Vitality 100000 (www.vitalitylondon10000.co.uk) our initial 10 places purchased for the event filled up very quickly indeed! We are delighted to announce that we have secured a further 10 places, making our team for London a team of 20 runners! This is a truly special event which takes on the sights of our capital city, starting and finishing outside Buckingham Palace.
If you would like to apply for a place at London Vitality 10k on 25th May, please email: el***@pa***.uk for further info. Fundraising target through Virgin Money Giving is set at a minimum of £250.
We are also still looking for runners for Brighton Marathon on 19th April. If you might like the challenge of a full marathon we would love to have you on our team! Please get in touch: el***@pa***.uk
But it’s not all just about running! We are also applying for places in some of the major cycling events across the UK too so we will keep you updated as news arrives. We also have other sports, activities and general antics in which our members are participating in to raise awareness and vital funds.
If you would like to arrange a sporting event in your local community in aid of PAS please get in touch: fu*********@pa***.uk
We would love to hear from you!
Fundraise while you shop
You can now fundraise for the Pernicious Anaemia Society every time you shop with Amazon, at no extra cost to you. Here’s how:
Go to https://smile.amazon.co.uk
Log in using your usual Amazon log in details
Select Pernicious Anaemia Society
Donate through PayPal
Wanted! A sympathetic person who is a good listener who would like to volunteer their time to help man our helpline. If you would like to make a positive contribution to the work of the society, and you can spare a few hours a week you may like to consider becoming a key member of the team and take telephone calls to the office. You won’t need to be in south Wales as we can route the calls to your mobile or landline at pre-arranged times. You would have to undergo a two-hour training session (we can travel to you for this) and you will have access to a manual that you can refer to. Some of the calls are routine – the most common is about treatment regimens including patients having their injections stopped altogether – some are more specific and some are from medical professionals including doctors and nurses. Unfortunately, some are very distressing.
If you think you would be able to help please get in touch with the society by applying here or call the office.
Many thanks to all those who volunteered to be filmed for our next documentary. Over the last three months we have collected several hours of personal stories and we still have room for more! If you would like to tell how PA has impacted on your personal life please contact us.
The documentary will be available in the spring of next year. A condensed version (around 10 minutes) will be sent to health decision makers and politicians to raise awareness of just how much an impact PA has on everyday lives and why the way in which it is diagnosed and treated needs to be thoroughly reviewed and improved. See above re. NICE