PSP Final Prioritisation
As you are probably already aware, the PSP workshops took place on the 1st and 2nd December, where 24 participants, 12 patients and 12 healthcare professionals attended. The attendees were sent an information and guidance pack in advance, which contained the priorities in random order and they were asked to identify their 3 most and 3 least important priorities and bring this to the workshops to aid and initiate discussions.
The Result: A ranked list of the top 10 most important research priorities for Pernicious Anaemia according to patients and health care professionals.
Our thanks to everyone involded in the workshops: the JLA facilitators who did a great job getting and keeping discussions going, the PAS team, and, most importantly, the participants who gave their time and effort and contributed so much to the whole process.
These are the final Top 10 Research Priorities for Pernicious Anaemia:
This morning, the Pernicious Anaemia Society hosted a Seminar where researchers with an interest in PA came together to be presented with the Top Ten questions and they discussed how things can be taken forward.
We’re pleased to say that around twentyfive researchers attended and they were not just from the UK – there were attendees from the USA, Denmark, Germany, Spain and Sweden.
We’re hoping that, following the Seminar, there will be several collaborations formed to take up the challenge of providing scientific answers to the questions.
And it is not only the top ten questions that can form the basis of research; there are another thirthy questions that, even though they didn’t make it to the top ten, are still interesting questions to be examined.
Providing robust scientific answers to any or all of these questions will help improve the lives of people with Pernicious Anaemia and will allow health care professionals to do their job better. This whole process started with you, when you participated in the surveys and workshops. So, a big thank you for your help! We might be asking for your help in the future when the research teams start their work.
How you can help
- Share your experiences of the issues discussed in the report with us
- Put us in touch with anyone you think might be interested in supporting our work
- Become a member/healthcare affiliated member of the Pernicious Anaemia Society
- Subscribe to news updates from our website or follow us on social media for the latest research news and developments on this project
Now we have the top ten, we need to fund work in these areas. Support the Pernicious Anaemia Society to address these questions, so that we can maximise the scale and quality of the work we can do together.
The key to future success will be working together and forming partnerships. We encourage all Pernicious Anaemia patients, their faimilies/carers and professionals to advocate the Pernicious Anaemia Research Priorities and to get involved in research to address these important questions.
You can read the full report of the Priority Setting Partnership here.
I will be very interested to hear the replies to these questions, especially number 4 as so many GPs refused treatment injections following the Covid outbreak. My own Doctor told me “That enough b12 was stored in the liver to last 18 months”, she also said that the injections were a placebo anyway. After 40 years of injections I would like to know when I was told lies, when I was diagnosed or 2 years ago.
I Noted the last post with interest. I was ALSO told by a specialist in Sydney (Haematologist) that I was likely also experiencing a placebo effect when I advised her that I could feel the onset of symptoms prior to my injection, followed by relief. She also suggested that I should consider seeing a psychologist (I have never suffered depression in my life). I subsequently found an integrative GP who was much more aware of PA (had existing patients), and I am now injecting myself every third day with the hope of stretching that out with experimentation. I have details of every injection I have taken and exact dates and timelines, and my blood results going back ten years. I can map out the blood markers that show the gradual onset of the condition (and with two pathology recommendations to investigate the relevant antibodies – which were not noticed by doctors) and gradual onset of Achlorhydria, malabsorption of vitamins and minerals, and osteoporosis.
My GP would not approve a iron infusion. He just did not understand the disease setting, and the concept of a ‘spurious’ Ferritin plasma reading within a inflammatory disease setting. To this end thankfully the same haematologist diagnosed functional iron deficiency, based on borderline low Ferritin, the disease setting, and relevantly my obvious symptoms. My PA journey and experience in Sydney, Australia has been a tale of woeful inadequacy in the medical profession. I had to ‘tease’ out a diagnosis (after 200 hours of research) and furnishing the specialists with positive Ab for both parietal cells and Intrinsic factor. I would love to set up and drive a Sydney Chapter of PAS. At least in Australia we can buy B12 over the counter and self inject – failing which I’m not sure what the outcome would have been for me because I experience severe psychiatric symptoms for nearly three years. I think my GI tract has permanent damage (no longer functions in a normal manner). The PAS research project will become very well chronicled at some point in the future and will spawn a new era for the condition. Goodness me if ever there was a cause worth its while it is this research initiative. Martin Birch
These comments are very interesting especially the Australian. How I wish we inject ourselves according to our symptoms just like those with Type 1 diabetes
I can only go about 4 weeks before I feel my b12 running low so I was thrilled when the nurse said that they were allowed to give them every 8 weeks as long as my GP agreed so I booked an appointment, by telephone of course.
My GP told me that the only reason that I wanted more B12 ‘jabs’ was because I was addicted to the feeling of euphoria that they gave me!!! He then asked what symptoms I felt when my B12 was low. I explained that I couldn’t hold a conversation, fell asleep all the time, legs feeling like rubber, numbness in hand and feet, you know, usual stuff that we all feel. He then asked how the injections benefited me and I told him all the above felt better, he said “exactly, you feel euphoric”. B100dy fool, excuse my language!
I think that he may be among the many ‘normal’ folk who have a B12 ‘jab’ to get more energy and he thinks that it makes us feel the same ‘buzz’, I wish!
I was diagnosed b12 nearly 20 year’s ago and should have had my injection the beginning of june,but told me I had to have a blood test and they have stopped my injection saying my level’s are high so they won’t give it me,but was told I need them for life ,I just don’t know what to do im forgetful have pins and needles in my hands and feet I’m tired all the time and always sleeping and keep feeling down and want to cry.
I feel as some others here,tired all the time4/5 weeks after vitamin injection which I receive every 8 weeks after an argument about it. A local nurse told me she only gave injections evey 3 months as a rule. I agreed to ty this to please her but later had to ask for shorter period and doctor agreed to evey 8 weeeks after I said I wished to go to another pratice… I feel that 8 weeks is too long . % weeks after last injectionI am feeling tired so often again.. Ihave started taking vit B 12 patches but not aware that these are helping. Does anyone kow of alternative B12 I can take in between injections? Iam hoping to glean more information on this site. I did tak part in detrimental symptoms survey about arranging priority of
I was very interested to read the above comments. I wonder how many of us have to fight for injections. I have to have injections about every 5 weeks. I fought to get them this frequently for years and often collapsed. Eventually, the doctor realised that I really needed them more often and I was ‘allowed’ to have them. I have just moved and am now going through another fight with a new doctor to get frequent injections. I was lying in bed for 8 days in total exhaustion before I was allowed one.
We must be able to change the appalling arrogance of some doctors who will only go by regulations and not listen to a patient’s health problems. Why should be have to collapse before being given something that keeps us alive.
I realise that I am not alone in my fight for frequency. What can we all do to rectify this problem?
I’m in the process of printing out the information specifically for my GP from the PAS website so, he can understand what I’m experiencing right this moment. How insufficient the treatment was for me ‘every three months’ that I am now being diagnosed with Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia. After three long years of symptoms with neurological impairment, I have felt completely let down , dismissing my symptoms to think it all in my head and feeling like I was a hypochondriac. Even my Gastroenterologist made me feel like crap insisting that my symptoms should have improved with the three monthly treatment. I had a recent consultation with her and she was mortified that I was in so much pain and discomfort. I’m booked in for another Gastroscopy in a weeks time for a review. She finally understood my concerns and insisted that she has to go back to the basics of Medical school as she hasn’t seen a patient so symptomatic with PA in a long time. Oh that’s great, why me?? Also, I have a Neurologist appointment too, more scans and testing, great! I could scream from the top of a mountain with the frustration I feel right now!! If only I was listened to from the onset of my symptoms I would not be in this situation now and would not require nerve pain medication and would not have deteriorated to this point. If I could take legal action for malpractice I would. The treatment guidelines NEED to change IMMEDIATELY all around the world or more people will be a burden to the health system. This disease is insidious, life destroying and silent and too often misdiagnosed as other diseases. This disease has been too long in the shadow of other misdiagnoses and now, it’s time to step up and for the world to take notice.
I have a relative in the US taking B12 tablets sub-lingually – ie it dissolves and goes into your bloodstream, bypassing the stomach, which we know can’t absorb B12. Does anyone use tablets in this way?