January 2017 – Volume 2 Issue 10

In this Newsletter:

Conference Success
Chairman’s Work Recognised
Working with NICE
New Documentary Planned
New Support Groups
New Research Project
Control Group Recruits Needed
2016 Review

Conference Success


The Tenth Anniversary Conference that took place in Birmingham in December 2016 was a resounding success; not only by those who attended to hear about the research programmes we have been and are involved in, but also by the guest speakers and other medical professionals who were there. The feedback we have had from everyone was 100% positive and makes all the hard work and effort that was put into organising the event worthwhile.

We, as a society, decided several years ago that we needed to stimulate research programmes that would investigate the numerous questions relating to Pernicious Anaemia that need answering, not just for the sake of science but to help us to be diagnosed quicker and treated better. And at least one new research collaboration has developed as a direct result of the conference.

Many thanks to Dilys and Petra who did so much hard work to ensure that the conference was a professional and well-organised event. Now it’s time to start thinking of the next one.

We’ve uploaded all the Presentations so you’ll be able to watch the whole conference from beginning to end. The Presentations are free of charge to members of the society.

Chairman’s work for people with Pernicious Anaemia recognised

The founder and current chairman of the Pernicious Anaemia Society was made a Member of the Order of the British Empire for his work on behalf of patients with Pernicious Anaemia in the Queen’s New Year’s Honours List.

“I graciously accepted the award not only for my work but also for the work of the society as a whole” says Martyn Hooper MBE.

The award means that the PA Society is now recognised as being a credible and reliable voice of patients with Pernicious Anaemia and will hopefully help our voice be heard.

The society would like to congratulate Martyn on his award and say thank you to those who nominated him and provided references as to his integrity and hard work.

Read Martyn’s personal account on his MBE here on his blog.

Working with NICE

The society continues to work with NICE in a bid to get the guidelines on the diagnosis and treatment of Pernicious Anaemia. Following last April’s meeting with Professor David Haslam, the Chairman of NICE, the chair attended an NICE information day for major UK charities.

“In April’s meeting, Professor Haslam asked to be kept up to date with the work of the society. Being invited to the charity information day was not only a valuable opportunity to network and gather valuable information, it was important recognition of the value of the work the society is doing. It is recognition that we are knocking on the right doors and being listened to as a credible representative of a special group of patients that has all the promise of bringing about change,” says Martyn Hooper, Chair of the Pernicious Anaemia Society.

Another meeting with NICE to discuss the updating of their guidelines on the diagnosis and treatment of Pernicious Anaemia, is in the pipeline for 2017.

New Documentary Planned

 

This year the society will be making a new documentary that will be based on what it has discovered is wrong with the way in which PA is diagnosed and treated, following up on the previous documentary, ‘Living with the Fog’.

This new documentary will concentrate on facts that are the outcomes of various research papers published since the last film was made. Work will begin soon on analysing existing data and evidence and then the film will begin to take shape. Once it is written and developed into a screenplay the society will be asking for your help. In the spring, volunteers will be sought to to be interviewed on camera to give a human perspective of how the issues with diagnosing and treating PA is affecting patients, their careers, their families and their social life. This will help the society in their work to raise awareness of the problems faced not only by patients, but by doctors struggling to work with the current tests.

Living with the Fog’, which was made in 2011, concentrated on raising awareness of the issues surrounding Vitamin B12 Deficiency and Pernicious Anaemia, but at that time there was no evidence that there were and are problems with the current test used to diagnose any deficiency, as well as serious problems with the test to determine whether any deficiency was due to Autoimmune Atrophic Gastritis. Nor did the society have access to data of how many patients are misdiagnosed and under-treated. That information is now available and the new documentary will allow the society to share that knowledge.

New Support Groups

Our network of support groups continues to grow with another three groups being established.

The first new group is for members living in or around Berkshire.

The group has been started by Sheila Newey who can be contacted by the following methods:

Email: berkshire.pas@gmail.com

Tel: Home: 01276 600255

Mobile: 07523 073171

The second new group is for member living in or around Worcestershire.

The group has been started by Lorna Davies who can be contacted by:

Email: worcester.pas@gmail.com

Tel: Home: 01684 899491

Mob: 07442 168858.

A third group is being set up for members in Somerset and Wiltshire. Further information will be available shortly on the website.
Support Groups are a great way to combat one of the worst aspects of having Pernicious Anaemia – the feeling of isolation and that nobody really understands what it’s like living with the condition. Please support your local groups as the organisers work hard to arrange the meetings.

New Research Project

A new research project is underway in Leicester and the lead researcher is looking for patients with Pernicious Anaemia over the age of 18 and receiving B12 in whatever form.

“We are looking for people with Pernicious Anaemia 18 years or over to take part in a small focus group discussion. We are keen to learn more about your personal experience of living with Pernicious Anaemia, particularly regarding your perception of how your Pernicious Anaemia is managed, and any challenges you may face in receiving adequate treatment,” said Dr Nicola Ward, lead researcher.

The focus group will take place at De Montfort University in Leicester in February 2017 and is being organised by Dr Nicola, who is a PASOC member. If you are interested in taking part, please email research@pasoc.org.uk and you will be contacted with further information and to discuss a suitable date for the focus group to take place”.

Control Group Recruits Needed

The research project looking at whether abnormal gut flora in patients means some patients need more frequent injections than others is in its final stage. Volunteers are still needed, however, for the ‘control’ group of patients.

Control groups are used to assess any variability in outcomes in the other groups. If you know somebody who has had his or her B12 checked in the past twelve months and was told it was normal, has none of the symptoms and is aged between 18 and 65 please contact us either by email, info@pasoc.org.uk putting ‘Control’ in the subject, or by telephone – 01656 769717.

Think of asking partners, siblings, offspring or friends. Participants will be required to provide a stool sample and urine sample. More information will be sent out to prospective participants. You can reassure any volunteers that the research team are fully compliant with all medical ethics requirements.

Review of 2016

In his new year review blog post the chair summed up some of the achievements from last year. The newsletter covers many of those topics but he also covered the launch of the new website and its impact on membership as well as his meeting with the manufacturer one of the three main machines used to detect Active B12 in his bid to raise awareness among health professionals of the health and economic benefits of introducing the Active B12 test into laboratories.

Volunteer

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Help others by organising to meet up locally for a coffee or lunch: start your own Support Group! We are looking for members who would like to become a Support Group coordinator for their area.

Have another idea how you can help? Let us know!

To apply or for more information just call the office or send us an email.

help

We rely on donations to continue our vital work.
Every donation is gratefully received and helps us carry on our campaigning.  If you have found our website or the society helpful please consider making a donation, no matter how large or small, everything helps.

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