When Surrey Support Group organiser Carrie-Anne Carr arranged for a public showing of the documentary Living With The Fog in January of this year her MP, Paul Burstow attended. Paul is the Minister for Health in the coalition government with special responsibility for Long Term Conditions. After the documentary had been shown Mr Burston took a few questions and promised to broker a meeting between the PA societ and officials at the Department of Health. That meeting took place on the 15th May at the Departments Headquarters in London.
At the meeting was Dr. Ian Barnes the UKs National Director for Pathology and Dr. Mike Galloway – Adviser to the Department of Health on Haematology.
The meeting was genuinely constructive with it becoming apparent that although medical professionals are aware of the shortcomings of the current Serum B12 Test to determine a patient’s B12 Status, they were not aware of the impact the shortcomings were having on patients lives. This is where the PA Society is able to contribute to the debate.
The meeting went on uninterrupted for over an hour and a half with not even a drill for a bomb scare bringing a halt to the conversations.
The Dept of Health were able to assure Carrie and I that the number of tests being carried out to determine whether the patient was deficient in B12 was growing every year. That could be proved by the statistics that were held by the Department. However, I pointed out that it was not the quantity of the tests being carried out that was an issue – rather it was the quality of the test that was the problem.
Carrie and I were asked to leave the two doctors and their civil servant alone to discuss this further which we were happy to do.
It was a very good meeting for two reasons. Firstly it brought our problems to the attention of some of the most senior medical decision makers in the UK and secondly it provided the department and its officials with the contact details for the society when they take this forward as they will surely have to do.
It is acceptable that clinical decision makers should not address the serious problems being encountered by members of the PA Society if they don’t know that the problems existed. It is not acceptable for them to do nothing to counter the problems if they know of the impact on patients of the shortcomings of the test. Now they know.