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.

My thanks to those who have volunteered to help man the telephone helpline service that we offer to our members. We receive a lot of calls from non-members asking for help and advice and, although we do our best to help these callers, it does mean that often members are unable to access the service. To help and support our members better, we have introduced a dedicated telephone number that only members will be able to access. This number will be visible to our members when they log in on the website on our Members’ homepage, our contact page and in the menu at the top of the website.

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.