Over 70% of telephone calls taken by the PA Society relates to the treatment of the disease. We’ve heard it all over the years, from patients who have been told that they are of a certain age and no longer need the injections, patients being told that their B12 levels are too high and they are in danger of developing serious medical conditions and that no further injections will be prescribed until several months have passed (this happens when patients have their B12 levels checked after requesting more frequent injections). Patients have been told that they have Pernicious Anaemia and so they need to eat red meat, whilst other patients pay privately for injections to supplement their needs. Others use a variety of alternative delivery methods to supplement their prescribed treatment including nasal sprays, sub-lingual sprays and lozenges, skin patches and even anal suppositories. However, the efficacy of all of these alternative treatments have never been subject to a thorough evaluation. For some patients these alternative treatments mean they can carry on with their everyday lives whilst for others they make no difference at all.

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

No-Deal Brexit

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:
https://www.nhs.uk/conditions/medicines-information/getting-your-medicines-if-theres-no-deal-eu-exit/

NICE explained

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:
https://www.nice.org.uk/guidance/proposed
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:
https://www.nice.org.uk/guidance/indevelopment
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.
https://www.nice.org.uk/guidance/inconsultation
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
NICE
10 Spring Gardens
London
SW1A 2BU
Email: nice@nice.org.uk

Research News

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

A new support group was started by our member Helen in West Sussex. The 1st meeting will take place on 18th November! Interested to attend? Email Helen via the details on the Events page. Any member from Sussex and around is welcome!

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

Fundraising News

From 2020 we will be expanding our sporting events. This is an exciting time for us at PAS as we will be getting our name seen and heard at some of the UK’s major sporting events for the first time.

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: elise@pasoc.org.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: elise@pasoc.org.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: fundraising@pasoc.org.uk

We would love to hear from you!

Elise running the London Marathon

Run for the PAS

Contact Elise for more information

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
Start shopping!

Donate through PayPal

You can securely donate via ‘PayPal Giving Fund’, the PayPal’s fundraising platform for Registered Charities. Also, you can Gift Aid your donation with PayPal Giving Fund. We will receive 100 per cent of all donations made through the PayPal Giving Fund.

Helpline Volunteer

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.

New Three-Year Plan
It has become obvious that the three-year plan that we envisaged for the immediate future of the society is unworkable and we are busy working with a Management Consultant (who is a member) to produce a more workable plan for the future. More about this in the next edition.

Documentary

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

Other News

Hidden Diseases

The UK’s Blue Badge Scheme is being extended to include those with a hidden medical condition (such as autism) in England (a similar scheme already exists in Scotland and Wales). We have had enquiries as to whether Pernicious Anaemia would qualify as a ‘hidden disease’, but whilst Pernicious Anaemia is often indeed a ‘hidden disease’ the criteria for assessing eligibility is based on the mobility component of Personal Independence Payment. Patients with Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia may be eligible due to their physical disability but, as we know, Pernicious Anaemia can cause all manner of psychological issues and one of the criteria is that the applicant “Receives the mobility component of PIP and has obtained 10 points specifically for Descriptor E under the “planning and following journeys” activity, on the grounds that they are unable to undertake any journey because it would cause them overwhelming psychological distress;
More can be seen here: https://www.gov.uk/apply-blue-badge

Brexit (again)

Our attempt to put pressure on NICE to prioritise our application for a Guideline using politicians is not going as well as it should be due to the continuing debate about Brexit. We were planning another Reception at the House of Commons in November but it is obvious that M.P.s have other things on their minds and nearly all parliamentary time is given over to debates about Brexit. Instead we have turned our attention to the Welsh Assembly with quite some success and we will be concentrating on the Scottish Parliament in the new year. We will be asking our Scottish members to contact their MSPs to attend a reception we are currently arranging in January or February. More details in the next newsletter.

0 Comments

Submit a Comment

Your email address will not be published. Required fields are marked *

SEARCH THIS WEBSITE
FOLLOW US
Subscribe to our latest news and stay updated!

Pin It on Pinterest

Share This