Summer 2019 – Volume 2 Issue 19
At the 2019 NICE Conference in May, current Chairman of the society, Martyn Hooper met with the Director for Guidelines Dr. Paul Chrisp. Martyn sought assurance that NICE were going to go ahead and develop a Guideline on the ‘Diagnosis and Management of Pernicious Anaemia’. Whilst NICE have agreed to develop the Guideline it hasn’t been ‘commissioned into the workstream’. This means that NICE have considered our request that a Guideline be developed on the Diagnosis and Management of Pernicious Anaemia and agree that there is a need for a ‘roots and all’ review of Pernicious Anaemia but they haven’t yet made it a priority.
“We need to put some political pressure on NICE” says Martyn. “And that is why we held a very successful Reception at the Welsh Assembly in June” he says.
At the Reception, we made several presentations to Assembly Members that outlined the problems that patients with Pernicious Anaemia faced in getting a quick diagnosis and effective treatment. One of the attendees was Dr. Dai Lloyd AM who is the Chairman of the Welsh Health Committee. Dr. Lloyd agreed to liaise with other Assembly Members to investigate these problems further.
Several of the AM’s have now requested a ‘One-Day Inquiry’ into the problems with the diagnosis and treatment of PA and this will be held in the autumn. The day-long inquiry will hear evidence from Doctors, Patients and the Pernicious Anaemia Society to highlight the current problems and the possible solutions that will not only improve patients’ lives but also save the Health Service several million pounds every year.
We have also suggested that the Senedd (Welsh Parliament) contact NICE to urge them to make the guideline on Pernicious Anaemia one of their priorities.
We shall be continuing to urge politicians from other parts of the United Kingdom, and from all political parties to put pressure on NICE to develop the Guideline as soon as possible.
It would help if you, our members, contacted your MP and ask him or her to raise this issue in the House of Commons or ask that they write to Dr. Paul Chrisp to urge the Director to make the development of the guideline a priority.
Dr. Paul Chrisp
Director of Guidelines
Level 1A, City Tower
Please don’t email or write yourself but ask your elected representatives to do so.
You can find out who your MP is by clicking here:
Presentations made at the NICE conference can be viewed here:
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 – and remember it’s all free.
Want to make sure you will receive invitations to upcoming meetings in your are? Update you email preferences here
CONGRATULATIONS ‘TEAM ELISE’
After nine months of training Elise Dyer completed the London Marathon held in late April.
Elise, who is a member of the society and who lives in southwest France contacted us just after the 2018 London marathon and asked if we had any runners for the 2019 event. We applied for a Silver Bond place which we secured and from August 2018 Elise and her team stepped up to the mark and began training for the 2019 event.
At a meeting in London with the Chairman of the society it was suggested that the money raised be used to make a full audio-visual record, and perhaps even a livestream, of the society’s conference to be held in Cardiff in early December.
“I thought it was such a good idea” she says. “It will mean that thousands of members will be able to hear what is said and discussed at the conference” she says.
The race itself was gruelling and the plan was that Elise would start slowly to ensure that she paced herself to finish the course. “Wow what a week!” she says. “I had such a ball, I absolutely loved it! No nasty moments. I took it very slow and steady and ran all the way apart from a slight hill at 20m for a couple of mins”.
But it wasn’t all good.
“I saw some dreadful sights from 16m onwards with poor souls suffering. I’m so glad I took it slow from the start”.
“That Marathon was tough” she says, “but nowhere near as tough as those four years when I was waiting for a diagnosis and treatment. Sufferers are the real heroes”.
What is surprising is that Elise doesn’t use injections to treat her condition but instead relies on high concentration sub-lingual Methylcobalamin tablets which she takes daily.
“Those who suffer between injections might want to consider the sub-linguals” she says, “but it’s important that you discuss this with your doctor first”.
And the fundraising didn’t stop when she had reached her target of £2,000.
“We went on a huge last min sponsor drive and got another £555 in the last 48hrs before the race. AMAZING. The total raised, including Gift Aid stands at an incredible £3,707.25 so I’m absolutely delighted beyond words. Oh My!”
We’d like to thank Elise on behalf of all of our members who will benefit from being able to access the content of the Conference in December.
We are tremendously grateful for all those who make particular efforts to raise money for the society. Sky-divers, Marathon Runners, Bake-Offers, Walkers and Swimmers have all helped raise much-needed funds for the society. Please let us know if you would like to participate in any event and would like a t-shirt or running vest to help raise awareness amongst the general public. You can also get yourself sponsored whilst raising awareness and fundraise for the Pernicious Anaemia Society.
Check out what others have done for the Society and how to start your own fundraise event or if you want us to promote your event on our Fundraising page, News page and social media.
Dr. Lenira Semedo is studying how and why patients with Pernicious Anaemia self-treat. And she needs your help in her investigations.
“We know that some patients do not get the treatment they need to best manage their condition from their doctor and resort to using a number of different methods to self-treat” she says. “I want to investigate how patients self-treat and, just as importantly, why they do so”.
Dr. Semedo has compiled a new survey that will give her lots of useful information that will help to stimulate debate on the current treatment protocols for treating Pernicious Anaemia.
If you have been diagnosed with Pernicious Anaemia, live in the UK and self-treat your condition please complete the survey by clicking here:
We are delighted to announce that Dr. Heidi Seage, Dr. Nicola Ward, Dr. Anna Guildford, Dr. Lenira Semedo, Katy Simister and Elise Dyer are now Trustees of the society. The next meeting of the Trustees takes place on Saturday 13th July at the society’s offices in Bridgend.
The Trustees of the Society are responsible for overseeing the general direction and work of the society, and receive an annual financial report that includes a report by the Chairman of the work of the society in the past 12 months and outlines the future plans for the society.
Support our Supporters
Supporting our members is at the heart of what we do here at the Pernicious Anaemia Society. Our support groups have helped many people over the years, but our support groups need your support. We’d love to expand our network of local support groups and improve the current groups and support more of our members.
The Big Christmas Give
In December, we will seek to raise funds online via the the Big Give Christmas Challenge, but we need pledges from our supporters in order to do this. Pledge promises are used to double online donations and could be worth four times their original value! Help us by supporting our Christmas Fundraising Drive via the Big Give Initiative.
How can you help?
All you have to do is to promise to make a donation between the 3rd and 10th of December 2019 by completing this form before the deadline on August 30th 7pm. Any pledge made now, will be used to match the money raised by the Big Give Christmas Challenge. Pledges can be paid to the Society after the campaign in any way that is convenient for you.
By pledging now to match a donation this Christmas, you will be help us raise vital funds for the coming year.
Thank you for your support!
PAS CONFERENCE 2019
Preparations are now well underway for the PAS 2019 conference ‘Treating Pernicious Anaemia – Getting it Right’ that will be held in Cardiff on Wednesday 4th December. Find out more on our Conference page.
FORTIFICATION OF FLOUR WITH FOLIC ACID
Last year the Chairman of the society, Martyn Hooper, was asked to appear before the UK Government’s Committee for the Toxicity of Foods. This was a committee of the Food Standards Agency which itself is part of the Dept. of Health and Social Care.
The committee was considering elevating the ‘upper tolerable level’ of folic acid in flour – basically fortifying all flour milled in the UK with folic acid which has been proved to reduce the number of babies born with Neural Tube Defects. Unfortunately, adding folic acid to flour will make it even more difficult to diagnose B12 deficiency. Martyn made this point to the committee adding that the PAS is not against the fortification programme, because it does have a positive effect on NTDs. However, the committee needed to be aware that there is a major problem in the UK and other countries with Vitamin B12 Deficiency which needs to be understood before any decision is made relating to mandatory fortification of flour with folic acid.
The outcome of the meeting was that the committee decided to seek wider views on the fortification programme and we have been asked to make you aware of this. Please have your say in this consultation by clicking here:
Read the short consultation documents and then scroll to the bottom of the page and click the Online Survey link.
CASE STUDIES FOR DOCUMENTARY
We are currently working with a recently retired BBC Producer on our next documentary, and are busy filming participants who have a story to tell.
If Pernicious Anaemia has impacted on your quality of life in any way we would like to hear from you. It may have led to you changing or losing your job; it might have led to a breakdown in any relationship or caused you to have to drop out of college or university. Maybe it has had a severe impact on how you live your life in terms of social and family life, recreation or any other area of everyday life that has changed because of the disease.
We also want to hear if you have tried alternative treatments that have not worked and you were forced to go back to having injections.
Have you developed an unique ‘coping strategy’ to help you live a more or less normal, if limited lifestyle?
If any of the above apply to you, and you are prepared to be interviewed on camera please get in touch. We will try to visit you but it may be necessary for you to travel to us.
Please use the email firstname.lastname@example.org
Your stories will help us to raise awareness amongst health decision makers of how it is important that patients are diagnosed early to ensure that they receive treatment early to prevent disruption to everyday lives in the future.
Professor J.M Chamberlain, from the Dept. of Criminology at Swansea University would like to hear from you if you have experienced any Medical Mispractice.
This project is in its early stages and is titled ‘Medicines & Machines’. We, as a society, have already been in contact but if you as an individual would like to share your experience please email Prof. Chamberlain at email@example.com