I will try and keep this as short as possible. 21 years ago GP diagnosed PA and up until 3 years ago I had B12 injections every 12 weeks. 3 years ago the CCG instructed GP's to cut down giving injections to anyone unless they had PA. My jobsworth GP decided to give me a blood test, which was in range (as it would be when getting injections) and pronounced I do not have PA. After that, I had no more injections and never requested any blood tests. Any routine blood tests I did have never included B12. After a while I started to get all the symptoms I had when I was originally diagnosed. I spoke to my GP and asked if I could have a B12 blood test. She agreed and it came back below range. She then arranged for intrinsic factor test. The results said "borderline - no need to do anything". A week or so ago she phoned me to inform me I do not have PA, however she prescribed me cyno pills with a blood test form for March next year.
Yesterday, for some reason or other, I decided to look at my records on line. I saw that a few days ago they had recorded that I do have PA. There was a note on there, which I could not make out whether it was from the District Nurses or to the District Nurses about starting me with three monthly B12 injections. I am practically house bound hence needing the DN to do it. Nobody has said anything to me about it.
What I am wondering is that when they do resume the injections, seeing as I have not had an injection for a few years now, should they start with loading doses or, as I suspect, they will just start the three monthly injections.
Happy New Year to everyone.
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Lilian15
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First thing I would do is take a copy of where it's recorded you do have PA, then they should resume the loading dose. Inform them of your symptoms and if necessary point them in the direction of the guide lines. Treatment for PA is for life.
Sometimes we have to be insistant due to the ignorance with regard the condition and treatment. I hope you feel better in the New Year once your treatment has resumed. If not insist on 2 monthly injections stating your treatment should not have been stopped, I would put the onus on them.
Do you know the time, date, name of GP and where you were diagnosed with P.A. 21 years ago ?
That is a definite diagnosis of a chronic illness.
Yes, as a Cost Saving Exercise CCG’s thought it a brilliant idea of reducing treatment to the detriment of patients.
They should NOT have re-tested your blood to decide your treatment. They did - meaning your Health and Quality of Life has greatly deteriorated.
Please consider joining the P.A. Society if you have not already. Tell them what has happened.
‘A week or so ago she phoned me to inform me I do not have PA, however she prescribed me cyno pills with a blood test form for March next year.’
This is rubbish. There is NO point putting you on tablets and re-ordering a blood test. Doctors are so poorly educated on P.A./B12D.
Take a snapshot of your online records which states you have P.A.
Please find out the name of the CCG’s Data Protection Officer and report the Surgery. They are NOT handling your Health Data correctly which is against the Data Protection Act (2018). It is impacting your Care and Treatment. Find out the name of the Practice Manager at your Practice and in writing tell them that your Health Records are inaccurate and inconsistent which has had grave implications for your health. You are also entitled to report them to the Information Commissioner’s Office, if they do NOT rectify the situation promptly.
Record Keeping is not a priority in the NHS but if you know your rights then hopefully you can get your treatment back pretty sharpish. Nobody likes to be seen as incompetent.
Yes, I do belong to PAS from when I was first diagnosed. It seems GP has asked the DNs to do three monthly injections, and she has had a reply saying they have to have a prescription before they can do anything. This was on the 28th December. I will wait and see if they contact me in the new year. Yes, I do have copies of the record diagnosing and instructing B12 every 12 weeks and I have now taken a photograph of the record saying I have been diagnosed with PA now. It is all the same surgery as I have been with them for 55 years now. Complete turnover of staff of course.
Good to know that you are your own Record Keeper. Lillian15, personally I would not wait for them to contact you. The NHS is disorganised and chaotic.
Yesterday I bumped into a good friend who has diabetes and complications. They told me each time they attend a clinic, hospital they are asked, Are you allergic to anything. Yes, Penicillin. It should be documented because it is super important.
I recently had a letter stating I am finally having a telephone appointment because I have Coeliac disease and guess what ? They have the wrong phone number on my file. So, how am I going to keep that appointment ? I have telephoned, emailed and written a letter because I really would like to keep that appointment.
Oh gosh, no it was not my GP, I was emailing the Information Governance team.
Information Governance is a MASSIVE Legal Framework regarding Data. It does not matter what country you are in Data has to be accurate and correct. Most people naturally think of money and Banking. You will notice if £1,000 has gone walkies from your account. You question it and it gets investigated.
I first studied a Computer Science and Information Systems degree. So, if one of my Banks does not have my correct phone number, they are very nice, have great Customer Service and amend it. The same laws apply to the NHS.
I understand the NHS have all sorts of Departments. So, if my Data is NOT correct then I tell the Data Protection Officer and the Information Governance Team. Plus, because I know these things which Data law that states they have to amend it and it has been done pretty sharpish. It is the Data Protection Act (1998) by the way.
Poor Lilian15 has been given the complete runaround due to poor Record Keeping. As a consequence, Lillian is poorly. An Auditor would throw the book at the GP Surgery.
I have my private GP’s email address. She is as good as gold. 😉
I do not think it is so much bad report keeping, more like manipulating my medical conditions to suit their budget and their extremely little knowledge. They have not only done this with B12, they have done this with my thyroid problems as well. Right now I feel I have lived as long as I have despite the NHS not because of them.
I am so sorry to learn Lilian15. It is a very sad state of affairs. It is communities like these and through Thyroid U.K., I heard Professor Margaret Rayman lecture.
Like MrsTuft, satchiB12Z and Cornwaller have said, You and all of us deserve so much better. This is why many of us, go ‘rogue’ that is code for self-treat.
I am going to have a nap as my fatigue needs to be managed.
You will not be surprised that my GP surgery has only just got out of being put under special measures it was so bad. I cannot see that it has improved much at all.
If you have any symptoms, it would be wise to start a series of every other day loading doses. Do you stay symptom-free with injections every 3 months? Many of us cannot go that long.
When I had the injections they were every 12 weeks (which every three months is supposed to be) and I used to find it lasted about 10 weeks clear and the further two weeks a bit iffy but OK.
My personal thoughts are that we should avoid the "iffy" times by getting injections often enough that we avoid them. By the time you feel things, it is doing damage to your nerves and cognitive functioning.
If they won't restart treatment, perhaps you could point out in a letter that withdrawing B12 injections could put you at risk of developing permanent neurological damage. Maybe include this PAS leaflet about SACD, sub acute combined degeneration of the spinal cord.
Search online for this UK document "NICE CKS Anaemia - B12 and Folate deficiency" and read it thoroughly. Compare it the local B12 deficiency guideline used by your ICB (Integrated Care Board)/Health Board.
NICE are publishing a new B12 deficiency guideline this year.
Search online for "draft NICE B12 deficiency guideline".
If you can't find your ICBs B12 deficiency guideline online, try searching forum posts here or submit a FOI (Freedom of Information) request to ICB asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Also worth looking for ICBs guideline on macrocytic anaemia. In macrocytic anaemia, red blood cells are larger than normal and it's associated with B12 deficiency and folate deficiency.
"She then arranged for intrinsic factor test. The results said "borderline - no need to do anything". A week or so ago she phoned me to inform me I do not have PA,"
Perhaps you could pass her this diagnostic flowchart which mentions Antibody Negative PA.
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