Making the guideline a priority
We are busy organising our Nationwide Political Campaign to bring pressure on NICE to make producing a Guideline on Pernicious Anaemia a priority. This will take place at the end of April where we will be contacting all MPs/AMs, MSPs and MLAs to ask them for their support. We will also be asking our representatives to ask questions in their respective representative assemblies to encourage debate about the unacceptable way in which Pernicious Anaemia is currently diagnosed and treated.
Meeting with Chief Medical Officer
We’ve been busy preparing for the scheduled hour-long meeting with the Chief Medical Officer for Wales next week. As well as the CMO there will also be a representative of the National Haematology Specialist Advisory Group. As always, as non-medical professionals, our job will be to raise awareness of the problems faced by patients, and their doctors, in diagnosing and treating Pernicious Anaemia. And, as such, we have been preparing a briefing that we will send to those attending ahead of the meeting. That briefing paper will show how the health service, along with health practitioners, would benefit from having NICE make their intended Guideline on the Diagnosis and Maintenance of Pernicious Anaemia a priority.
The briefing paper will be a condensed version of the report that we prepared for NICE two and a half years ago that showed the financial burden on the health service due to the poor diagnosis and management of the disease. If we can convince the CMO of the need for a roots-up investigation into the problems with diagnosing and treating Pernicious Anaemia then hopefully he and others will write to NICE asking for them to make their proposed Guideline a priority.
This important meeting came about because one of our members from south Wales attended a surgery of her local Assembly Member and raised awareness of the problems faced by patients. The Assembly Member wrote to the Minister for Health who then asked the CMO to call a meeting with the society.
What you can do to help the campaign
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 a question to the respective Health Minister asking what is being done to address the problems of diagnosing and treating Pernicious Anaemia. We really need your help in this so please take a few minutes to contact your representatives. The more people write their representative, the bigger the impact. You could add that we will be happy to speak with them via the telephone or email if they would like further information. Details of who your representatives are can be found here: Write to them.