In this Newsletter
- Campaign for the guideline on Pernicious Anaemia →
- British Isles B12 Group →
- New Treatment Development →
- Support Group coordinators Training Day →
- New: conference interviews →
- Upcoming Events →
- New Management Structure →
- Documentary: Living with PA →
- PAS challenge events 2020 →
- PA and the coronavirus →
- Postponed/Canceled Events →
Spring 2020 – Volume 2 Issue 22
Meeting with the Welsh Government
Last week, PAS chairman, Martyn Hooper MBE along with PAS office manager Karyl Carter met with the Chief Medical Officer for Wales, Dr. Frank Atherton, and members of the Welsh Haematology Group at the Welsh Government’s building in Cardiff on the 26th of February. The meeting was organised by Huw Irranca-Davies AM. They were aware of the problems with the tests for B12 and the Intrinsic Factor Antibody, but they weren’t aware of the consequent suffering by patients or the enormous costs incurred as a result of the inaccurate and unreliable tests.
Haematologist Dr. Gorringe agreed with Martyn that the current situation needed to be addressed and the CMO left to brief the Minister after an hours discussion. The meeting lasted for just over an hour and the outcome was that the Welsh Government will be investigating the need for a thorough review of the way in which PA is diagnosed and treated.
Making the guideline a priority
We want the Ministers for Health to write to NICE asking them to make the development of a Guideline on Pernicious Anaemia a priority. The CMO, and the Haematologist, along with the other scientists present, were genuinely unaware of the suffering patients were experiencing because of the current problems with diagnosing any B12 Deficiency and whether that deficiency was caused by Autoimmune Pernicious Anaemia.
The more pressure is put on the Government the more likely it is that NICE will be asked to make the Guideline a priority. It was also noted at the meeting that there was a need for GP’s to be made aware of the shortcomings of the current tests being used and there seems the likelihood that some training will take place sooner rather than later. In all it was a very successful meeting.
What you can do to help the campaign
We want all of our members to write to their elected representatives (MP’s and, in addition to MP’s MSPs in Scotland and MLA’s in Northern Ireland) asking him or her to submit questions to the relevant Health Minister asking him or her to ask NICE to make the development of a Guideline a priority. Please contact your representatives and tell them about the problems in getting diagnosed quickly and treated according to your needs. All you have to do is write a short letter or email asking him or her to ask NICE to make the Guideline on Pernicious Anaemia a priority, or ask questions to the respective Health Minister asking what is being done to address the problems of diagnosing and treating Pernicious Anaemia.
Please help us to help you and send those emails/letters! Encourage your friends and family to write to their MPs and prospective parliamentary candidates as well. The more people ask, the more attention we will get from politicians. We are making progress but we really do need your support.
A sample letter/email to your Elected Representative can be downloaded here.
You can find out who your elected representatives are by clicking on the links below:
Members of Parliament.
Members of the Welsh Assembly.
If you live in Wales, you are represented by 5 AM’s: one for your electoral constituency and four for your electoral region. You have the option to write to your constituency AM, and/or your 4 regional AMs, as well as your Westminster MP.
Members of the Scottish Parliament.
Members of the Northern Ireland Legislative Assembly.
British Isles B12 Group
Following last December’s conference held in Cardiff, a new group of around 40 doctors and scientists has been formed that is going to concentrate on the biochemistry of B12 – especially the cellular take-up of the vitamin which would explain why patients need different treatment frequency.
This new group, called the British Isles B12 Group – BIB12 – is holding its first Symposium on the 8th-9th July at Churchill College in Cambridge. The PAS is part financing the meeting which will examine all manner of things to do with identifying and treating B12 deficiency including, of course, the most common cause of any deficiency – Pernicious Anaemia which, as we know, is very difficult to diagnose.
New Treatment Development
We’ve been contacted by a researcher from the Department of Biological and Life Sciences of a large UK University asking if we would be interested in acting as an adviser to a project that is looking to develop a new delivery method for B12 injections. Obviously, this is all confidential at the moment but we have to say that this new innovation has the capacity to really change the way in which we, as patients, are treated, and has the real potential to improve patients’ lives and those of their family and friends. This is in the initial development stage and we will be travelling to the University for a morning meeting in the next few weeks to explore how we, as a society, can get involved. It will probably involve recruiting participants for trials – though that won’t be for a year or so.
NICE Guideline on Multiple Sclerosis
The Draft Scoping Consultation on MS has now been published and we’ve been asked to comment on it. We know that a great many of our members who have developed neurological damage due to late diagnosis were originally investigated and even diagnosed with MS, and so it’s important that we raise awareness of this and that it is addressed in the Guideline. We will be commenting for the PA Society but if you would be interested in taking part in the development of this or any other Guideline as an individual you can find out more information about how to do so by clicking here.
Help grow our local support network: training day for new coordinators
If you are considering setting up a group near you but feel you need more information and some instruction as to the do’s and don’ts of setting up a group do come to our special coordinators training day on Saturday 4th April at the society’s offices in Bridgend, south Wales. If you are considering setting up a group near you but feel you need more information and some instruction as to the do’s and don’ts of setting up a group you will be welcome to attend the event; for more information do get in touch.
We are particularly looking for new coordinators in Leicestershire, all areas of Scotland, Bedford and Devon/Cornwall/Dorset.
Support Group News
We have found a new coordinator for Hampshire and we are hoping to start groups soon in Surrey, Kent and Greater London North-West. Keep an eye on our Events page or make sure you get invitations to the meetings you are interested in by clicking the link on the Member Homepage.
Postponed: Dublin Get together
After much deliberation, and close monitoring of news channels we have made the difficult decision to postpone the Dublin Get-Together scheduled for Saturday 14th March – this coming Saturday.
This decision has been taken because of the continuing rise in cases of the Coronavirus. We felt a wise precaution to cancel the event due to the continuing rise in cases.
We will be re-scheduling the event in the future, probably sometime in May. We will email all those who were due to attend on Saturday with a new date and we will also be publishing the event on our website and on social media.
As patients with Pernicious Anaemia, our immune system is already somewhat compromised and we simply don’t want to take the risk of any of our members becoming ill. We hope that you all understand.
We were looking forward to meeting with our Irish members, but remember this is a postponement rather than a cancellation – we’ll see you all later in the year.
Wiltshire 30th March
Dedicated Helpline Telephone Number
Conference presentations & interviews (*new*)
In case you missed our conference last December and haven’t watched the videos yet, you can watch all the conference presentations of the day here. We have now added the post-presentation video interviews with the speakers from the December 2019 conference to our website as well so be sure to check those out. You can read more about the conference and our speakers here. PAS Members can just log in and watch the Conference presentations and the interviews here.
Coming soon: Living with Pernicious Anaemia Documentary
We know it’s been a long time since we interviewed members for our upcoming documentary ‘Living with Pernicious Anaemia’ but we are happy to tell you that editing the captured interviews has now begun and the documentary will be available hopefully by the end of March. If you are interested in being filmed and telling how Pernicious Anaemia has impacted on your everyday life please get in touch. Please include a telephone number and let us know a convenient time that we can call you.
Our finances had an unexpected boost in the new year when the organiser of the Prince of Wales Pub in Coychurch, near Bridgend, contacted the office to tell us that they were going to give us £750. The pub holds a regular quiz night and every year presents cheques to local worthy causes. And this year we were to be one of the worthy causes. Martyn Hooper, our chair, went along and received the cheque last week. Our thanks to all the quizzers for thinking of us!
New Management Structure
A meeting was held at the end of January with Petra Visser, our online-manager, and Stephen Ganter, a member of the society and recently retired Management Consultant and Martyn Hooper, our executive chair, to discuss a new potential management structure of the society where people working with and for the society would become aware of what different people are doing and easily access all the information needed for their work. We are also working on streamlining our workflow and improving our support channels. The meeting was extremely successful and the new management tools and facilities are currently being developed and implemented.
We’ve had several telephone and email enquiries from members regarding how the Coronavirus relates to Pernicious Anaemia. Pernicious Anaemia is an autoimmune long-term condition. It is stated that patients with long-term conditions and compromised immune systems will experience more severe symptoms if they contact the disease:
“Generally, coronavirus can cause more severe symptoms in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease”
This may mean that some of the patients with Pernicious Anaemia could be more at risk or maybe more fearful of the condition. Ideally then, patients with Pernicious Anaemia should follow government guidance to prevent contracting the disease. There is no specific advice to give to Pernicious Anaemia patients. What you need to do depends on your medical situation, age and perhaps other factors. We therefore advise you to contact your doctor with any questions about your personal situation. Read More →
Join or support us in the 2020 PAS Challenge events
Exciting sporting events for the PAS are well underway. 2020 is an exciting year for PAS with regards to sporting events around the country and abroad. Our aim is to get PAS noticed at these top events to raise awareness of our charity and cause.
Brighton Marathon – Sunday 19th April
We have 3 members runners running the Brighton Marathon for us this year, Elise, Sarah and Dave. Their training is well underway and with the date now looming next month they have just another 6 weeks of training left to their big day!
If you would like to read their stories and why they are running a marathon for the PAS to raise awareness and of course if you’d like to support them, please click on their links below:
London Vitality 10000 – Monday 25th May
Our first ever event with 20 runners and walkers takes places in London on Monday 25th May. Starting and finishing on The Mall, it really is a slice of The London Marathon itself! We have a fantastic team of members who are taking on the challenge of ‘couch to 10k’ and really enjoying the training so far. Well done to you all we’re so very proud of you! We still have 2 places left and it’s not too late to sign up if you fancy joining us for a really fun day out.
You can find out more about our team for this event via our fundraise page.
Prudential Ride London – 15/16th August
We have been lucky enough to secure 2 places in this fabulous cycling event, 100 miles around London and Surrey. Prudential RideLondon is the largest annual cycling fundraising event on the planet. If you would like a place riding for us please do get in touch, we’d love to hear from you.
Great North Run – Sunday 13th September
The biggest half marathon in the world!! 2020 is going to be a very special year as it’s the 40th Great North Run, starting in the centre of Newcastle and finishing at the coast in South Shields. We have 5 places available, so we are waiting to hear from our special 5 runners. Please do get in touch.
Other fundraising challenges
We also have had some lovely messages from fellow members with stories of their own personal fundraising antics, which we are always delighted to hear about and see photos of.
Running a marathon in the US
Maria from Atlanta in the US got in touch with us recently as she has taken on the marathon challenge too. She was diagnosed with Pernicious Anaemia 2 years ago and is running this marathon to raise awareness in the US. See Maria’s story and support her by viewing her page here.
Climbing a mountain
Emily, Rachel and their gorgeous fur baby Skye are climbing a Mount Schiehallion (equivalent height of 10x Big Bens) in aide of PAS. Rachel’s gran Elsie suffers from PA so it is a cause close to their hearts. Good luck girls and thank you so much for your efforts. For more info see their page here.
There are lots of ways you can support the PAS by fundraising: get yourself sponsored and run, walk, climb or swim. Or organise a high tea, a coffee morning, a party or bake cakes and cookies and sell them! Find out more here.
Once you have decided on what you want to do, it’s as easy as opening up a Virgin Money Giving page and sharing the link with us and everyone else.
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
Donate through PayPal
Run or ride for the PAS
There are lots of ways you can support the PAS by fundraising: get yourself sponsored and run, walk, climb or swim. Or organise a high tea, a coffee morning, a party or bake cakes and cookies and sell them! Any other crazy ideas get in touch with us and we will help you publicise and promote your fundraising event.
Once you have decided on what you want to do, it’s as easy as opening up a Virgin Money Giving page and sharing the link with us and everyone else. Check out more on our fundraise page.
If you would like to know more or want us to promote your fundraising event, just email us!