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.
I was diagnosed 3 years ago.., 12 weekly intervals left me incapable, depressed and quite frankly not employable! My doctor has agreed to 10 weeks… better but I need 8 as 2 weeks either side are degenerative. Pernicious Anaemia was a contributory factor in my mum’s suffering prior to her death as her doctor failed to tell the hospital it was needed.. PA goes under the radar and sufferers are not given the support and treatment they deserve to maintain a quality of life that is easily achievable with more frequent injections.
I totally agree with everything you have said here, practically the same as my experiences.
Took years to diagnose. Even now only get injections every 10 weeks. This took months of fighting for. lots of arguments, stress and providing proof, medical papers. Not enough as symptoms return after 6 weeks. Even now at last checkup gp said in his experience shouldn’t be having as normally 1 or 2 tablets cures it.
I was diagnosed with pernicious anemia 10 years ago i get my injection every 12 weeks and no one has ever shown any interest at the GP how it effects me i am not sure if its because i work but that is necessity not choice i am 62 and wonder what the future holds
Yes , that is my experience. No one asks is this working for you. You are left to find alternatives, not really knowing what consequences that will have.
I moved to France End October 2019. Cant find a doctor to sign on with (at the moment). Went to phatmacie to get help on repeat prescriptions. No problem in obtaining and they gave me a box of B12, with needles and syringes. Recommendation inject monthly. Not 12 weeks. Had 15th January injection, and 15th February injection. Never felt so well, alert, active and positive. PA for over 20 years struggling on 12 week jabs. What a difference.
I sympathise entirely with you. This is my experience too. I got doctor to eventually give injection every 8 weeks but often it’s not enough. Most Doctors are amazingly closed to learning or listening to anything about PA. Hopefully this will change. I did go to my MP who took it too the then minister for health in Scotland. She didn’t want to know and refused to do anything. So upsetting.
Let’s do this!! Changes are essential!!
If people dont have B12 then they die..Thats why its called pernicious anaemia and it cost pence for each injection.Why if you have diabetes you can test yourselve and get injections when your body needs it and without it they too would possibly die, so Whats the difference ?
I thought the guidelines already exist and that they have recently been changed to suggest injections every 8-12 weeks? Is this not the case?
That is the BNF which only states the dose of B12, see: https://pernicious-anaemia-society.org/pernicious-anaemia/restrictive-treatment-changed/ NICE guidelines are evidence-based recommendations for health and care, for the whole diagnosis and treatment and everything involved in PA.
I was diagnosed after 10 years of being really ill. Because I was a vegan the doctors automatically assumed it was diet related. It took 10 years before I got a definitive diagnosis. Feeling ill and not being able to anything but teach and go to bed. Felt really ill and depressed and cognitively impaired. I now self inject every week and am gradually begining to feel more normal.
I had biatric surgery about 10 years ago after being diagnosed with thyroid and Polisistic overies issues at Hope hospital. I found out recently I should have been having B12 injections since. I was diagnosed with pernicious anemia last year after years of suffering with memory problems and chronic fatigue. I’m also diagnosed now with fibromyalgia and early onset osteo athrisis vitimin issues. I have tried to say 12 weeks is to long I rest most days due to chronic pain and fatigue.
I suffered for 12mths with pain I had numerous blood tests , the doctor asked if anybody in the family had PA as it’s hereditary and my red blood cells were enlarged , then had a biopsy and was told I had PA , I have 3monthly injections and felt well , been having them for 30 years .
Then the doctor after having a blood test told me I couldn’t have any b12for 12 months as my levels were high , I felt so ill in them 12 months I was having double vision and was off balance and weak , I will not come off it again and wish I could have an injection every 2weeks.