UPDATE ON DEVELOPMENT OF A NICE GUIDELINE

Active Debate

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.

Parliamentary Reception

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:
https://www.nice.org.uk/standards-and-indicators/selecting-and-prioritising-quality-standard-topics

RESEARCH UPDATES

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

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:
https://imaginebelfast.com/events/the-dangers-of-vitamin-b12-deficiency/

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

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:
http://www.niceconference.org.uk

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.

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.

Her latest update can be read here:
https://weblogit.co.uk/u/runningforb12
Or go straight to her Fundraise page here: https://uk.virginmoneygiving.com/EliseDyer

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

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:
al**@se***************.org