In this Newsletter
Spring 2019 – Volume 2 Issue 18
UPDATE ON DEVELOPMENT OF A NICE GUIDELINE
Last Autumn we reported that our four-year campaign to get the National Institute for Health and Care Excellence (NICE) to conduct a thorough investigation into how Pernicious Anaemia is Diagnosed and Treated had been successful. However, there is still a long way to go and lots of work to be done. We need to get the Guideline on the Diagnosis and Management of Pernicious Anaemia seen as a priority, and we will need your help to do this.
We want to ensure that NICE is aware of how important developing a Guideline on PA is, and how it really should be one of their priority topics. To do this we want to ensure that there is an active debate taking place surrounding the problems with the diagnosis and treatment of PA. And, to stimulate this debate, we will be organising a political campaign to ensure that politicians are aware of the unnecessary suffering being experienced by their constituents. This campaign will concentrate on the regional governments in the UK as well as the National Parliament. We have already organised a Reception at the Welsh Assembly that will take place on June 6th. All Assembly Members will be invited to attend. We will be contacting all members of this society who live in Wales in the next few weeks, and asking them to send an invitation to their representatives to attend the Reception.
We are busy organising a similar event for Scotland. Campaigning in Northern Ireland is difficult as Stormont has been suspended but we will be considering alternative arrangements for our Northern Ireland members.
In May we will be asking all of our UK members to invite their MP to attend a House of Commons Reception where they will be given a presentation on the problems faced by patients getting diagnosed and treated. MPs will be asked to debate, write letters and ask questions about the problems we face in getting diagnosed quickly and treated according to our individual needs. This will, hopefully, make NICE aware that there is an urgent need to produce that much needed Guideline, and schedule our application into their work programme. Topics are prioritised every August.
More about the NICE Development process can be seen here:
Shortage of B12
There have been reports of patients having difficulty obtaining B12 Injections from internet ‘pharmacies’. We understand that this could be due to a manufacturing plant in China being closed for several months while it underwent refurbishment and a tightening of quality control.
There are only three factories in the world that manufacture the basic form of B12 – Cyanocobalamin – on an industrial scale. Two of these plants are in China with another in France. There are many other manufacturers throughout the world who use the basic cyanocobalamin preparations to produce refined forms of B12 including Hydroxocobalamin, Methylcobalamin and Adenosylcobalamin and produce ‘brands’ of the injections, sub-lingual sprays and lozenges, nasal sprays and skin patches.
We understand that the third manufacturing plant has now restarted production and any shortages should soon be addressed. It has, and is, proving difficult to get more information but we will keep you updated when we know more.
A few years ago, we reported that some pharmacies in the UK were having difficulty obtaining Hydroxocobalamin injections. On that occasion we made the Dept. of Health aware of the problem which was quickly addressed. We have once again been made aware of a supply problem in certain parts of the UK which we have made the Dept. of Health aware of.
We have also carried out our own investigations and have found out that the reasons for shortages can be complex, but if they are mainly localised then it is likely to be an issue with one particular wholesaler having stock issues. GPs and pharmacies will have particular wholesalers that they obtain most of their stocks from. In some cases, this is determined by contract restrictions, or keeping business within the company as a whole (for large multiple pharmacy chains). Sometimes (as long as the supply problem is not more widespread) the drug can be obtained from other suppliers, but usually at a greater cost as it may be outside of their usual contracting – therefore there may be reluctance to obtain the drug from them as it would potentially be at a loss to the pharmacy (or GP) if it costs them more than they receive in payment.
If there is a localised shortage in your area please let us know by telephoning the office between 8am and 12 noon on Tuesday, Wednesday, Thursday and Saturday mornings so that we can make enquiries to the local NHS Trust or Clinical Commissioning Group.
Medicines and Brexit
The British Government has addressed the problem of sourcing medicines from outside the UK in the case of a no-deal Brexit. H.M. Govt. have also drawn up contingency plans for the supply of medicines in case the UK exits the E.U. in a no-deal scenario.
These are very uncertain times and nobody can accurately predict what might happen in the near future. More details can be found here:
Second Stage of Research Begins
You may remember that we told you about an unexpected and exciting discovery in the research project that is looking into the issue of some patients needing more frequent treatment than others. Well, we’re glad to say that the second stage of the project is now underway. No new participants are required at this stage as more stool and urine samples will be provided by the original patients. This time, however, the research team will be asking more questions relating to their age, gender and how long after their last injection the samples were provided. More testing into the bacterial make-up and molecular structure of the samples will then be made and hopefully, by the end of the summer, the team will have enough information to publish their results in a recognised medical journal. The research team want to thank all those taking part in this second stage. The researchers are confident that they are on the verge of an exciting scientific discovery. We’ll keep you informed of any developments.
NEW RESEARCH PROJECT
Participants are wanted for research on Pernicious Anaemia and experiences of diagnosis and self-treatment
This research is being conducted by Valentina Acquaviva, a MSc Health Psychology student at the University of the West of England, Bristol, and Dr Victoria Clarke, an Associate Professor in Psychology. Anyone aged 18 or older is invited to participate if they have some experience of self-treatment for Pernicious Anaemia. Participation involves completing a short online survey with 3 main open-ended questions – you write your responses in your own words. The survey should take around 10-30 minutes to complete. If you’d like to talk about your experiences in more detail with Valentina, please provide your email address at the end of the survey and Valentina will send you details of the second – interview – phase of the study. You can complete the survey here: http://go.uwe.ac.uk/PASelftreat
The Dangers of B12 Deficiency
Queen’s University, Belfast, Saturday 30th March, 10am – 12 noon
Due to unprecedented demand, the organisers of the symposium have located a bigger hall at the venue and, as a consequence, more tickets have been available and so if you have previously applied for a ticket and were told the event was sold out please try again. The event aims to raise awareness of the impact of Vitamin B12 deficiency with presentations from the Pernicious Anaemia Society, Queen’s University Belfast researchers and patient experiences. Stay after the presentations to chat to others about how B12 deficiency has impacted on you or your family and help researchers design a study to evaluate the experiences of patients with B12 deficiency.
More information is available here:
Manchester Conference Centre, Wednesday 3rd April, 9am – 3pm
This event is being hosted by the developers of the ‘Active B12’ Test and is aimed at GPs, Haematologists, Haematology Nurses and other Medical and Health Professionals.
You may want to print out the flyer to let your doctor or other medical professional aware of the event which will earn 4 units of Continuing Professional Development from the Royal College of Pathologists. Read more about this event and get the flyer here:
The Challenges of B12 Diagnosis Event
NICE ANNUAL CONFERENCE, 2019
Hilton Deansgate Hotel Manchester, Thursday 9th May, 9-5
The society’s Chairman, Martyn Hooper will be attending after being offered a bursary and will be representing the society though he will not be speaking at the event (other than to ask questions and take part in any debates). More information here:
TREATING PERNICIOUS ANAEMIA: THE GOOD, THE BAD AND THE UGLY
Jury’s Inn, Cardiff, 3rd & 4th December, 2019
The PA Society is organising this event and we have applied for lottery funding to finance it.
Not only do we want to make clinicians aware of the poor treatment that many of our members have to deal with but also make them aware that there is good practice out there with many doctors providing a treatment regimen that is tailored to the needs of the patients.
We will be hosting a Round Table Dinner for sixteen of our Research Partners where they will be presented by questions that you, our members, would like the answer to. We will be asking you to submit any question nearer the time.
During dinner the researchers will discuss the questions and hopefully provide some answers.
The next day will see a wide range of presentations from health professionals who have been working with the society on a range of different topics. Confirmed speakers include:
Rachel Barnes, Dr. Anna Guildford, Prof. John Hunter, Dr. Heidi Seage, Dr. Lenira Semedo, Dr. Nicola Ward, Prof. Martin Warren.
There will be 100 tickets available and we hope to use the event to bring clinicians and patients together to open up a dialogue between the two interested groups.
Tickets will be available in the autumn. More details to follow.
LONDON MARATHON UPDATE
Many thanks to all of you who have supported Elise Dyer in her training for the London Marathon next month.
Elise is just a few hundred pounds short of her target of raising £2,000 for the society. If you haven’t already sponsored her please consider doing so – any amount, no matter how small, will be gratefully received.
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.
ASK FOR THE EVIDENCE
We received the following email which provides the opportunity to challenge the evidence used to diagnose and treat Pernicious Anaemia. Please contact the organisers if you would like to get involved:
AfE Ambassador Poster
Sense about Science is launching the next phase of the Ask for Evidence campaign and we’re recruiting 20 ambassadors to lead the campaign.
As supporters of the AllTrials campaign it would be great if you could spread the word about the post among your members.
Ask for Evidence is a public campaign that helps people request for themselves the evidence behind news stories, marketing claims and policies.
I’ve seen that the Pernicious Anaemia Society works to provide information and support to those who are sufferers of pernicious anaemia. At Sense about Science, we believe that the best support and information is that which is evidence-based – it is for this reason that we feel that your members and supporters would be a great fit for this campaign.
Becoming an ambassador is an opportunity to encourage others to engage with these issues by giving talks, running activities and encouraging others to Ask for Evidence.
Our ten existing science ambassadors have already reached over 50,000 people and we have had over 1000 people ‘ask for evidence’ – you can see their stories here. It’s also prompted work on activities for young people.
See for full deatils the advert below or here).
If you would like an informal chat about the role then please get in touch with my colleague at:
New Support Group
A new support group was started by our member Sandra in Lancashire. The 1st meeting will take place March 27th! Interested to attend? Email Sandra via the details on the Events page.
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
OUR SUPPORT GROUP NETWORK GROWS
We’d love to expand our network of local support groups. The society can help by emailing an invitation to all members within a certain geographical area and promoting the event on our website and social media, but it takes someone special to find a suitable venue and organise refreshments etc. If there isn’t a Support Group in your area you may want to think about starting one up.
GET INVOLVED AND VOLUNTEER!
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.