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PAS Campaign: Meeting with the Welsh Government and what you can do

10 Mar, 2020

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.
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.

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.

2 Comments

  1. Jo

    Andy Goringe knows exactly how patients are suffering unnecessarily because I had at least an hour with the man in 2014 but he’s of the belief that oral supplementation is adequate 🙄

    Reply
  2. Penny Armour

    Thankful for your efforts on all our behalf
    The situation at the moment is unacceptable
    Reducing many people to self inject

    Reply

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