My sons B12 reading last year was 163. Last week is 139.Now been told new guidance from NorthTyneside is under 115 before being entitled to injections.
I am furious, upset and so concerned for him. How can they move the goal posts like this. 54 years old and dismissed like this. Do they want patients to be non functioning before giving any help?
Oh sorry I am so worried for him. He has awful depression, but joy of joy he can have any anti depressants he wants. He has little enthusiasm, still tries to surf but often backs out, restless leg is awful, (not sure if this is related to B12d) Little sleep. No peace of mind. My heart aches for him.
Sorry to rant. I am seriously worried that he becomes so low that it will take years t correct. (this is what happened to me)
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3rdNettydoon
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This is the bureaucracy, somebody somewhere had chosen that ridiculous level of under 115 mg/L in NorthTyneside. This is what is called the Postcode Lottery in Health Care. Different Trusts and Health Boards have their own rules because of the way that each are run.
They have their own Chair, Board of Executives and GP Practices have different set ups. So, even with NICE Guidelines, each Trust can say, We have our own rules. Now, some GP has admitted they have been fined yes, you read that correctly because they treated a patient whose B12 blood results were ‘in range’ but they were very physically unwell. So, this shows that GPs can be stuck between a rock and a hard place. Although, it does not help your son. You know yourself that P.A./B12 can take years to get back on to an even keel. So :-
1) 54 year old man, Restless Legs, Severe Fatigue, Poor Cognitive Function, other symptoms like Shortness of Breath, dizziness and Family History.
2) What is his Ferritin, Folate and Vitamin D ? Please get printouts.
3) Can he afford to see a Private G.P ? He takes the above information with him.
I had a phone call from a Private G.P. two days prior asking whether they needed to get a Hydroxycobalamin injection all ready for me. See the different approach.
Then tonight, I did some digging around. Now, I know that some nurses and doctors have left the NHS, some have even become Comedians. However, lots have gone to private practice. There is no guesses why. This year, nurses, junior doctors and consultants all went on strike all at different times. It was not just about the pay, it was about the working conditions.
Now, I know Beauty Parlours give injections and no, I do not agree with them. Last week, I visited one for Laser treatment and guess what ? A Dermatologist was working there. She laughed at my tattoos. So, I had a delve into Aesthetic Clinics and lo and behold, some qualified doctors who have had enough of the NHS, undertaken all their Post Graduate training are working in these Clinics too.
I worked with midwives from all over the world. Lots of European ones said, Nope, I have done my time, I am going back home. So, it really is a discussion, do you wait longer for your son to be so ill ? Do you go private to have the first injection and the doctor to discuss or do you look at clinics and check people’s backgrounds and qualifications so you know that they are Medically Qualified. At the moment, your son has been given a medication that will not treat him.
This! 🙌🏻 Right on so many levels. I still find it shocking these determinations of what a local trust will or won’t fund are keeping so many patients from optimal health and treatment. Had my B12 levels dropped by a few more points, injections would have been prescribed without question.
The penny dropped when another Dr told me, “The NHS is not financed for this treatment as your levels are not low enough for them - the politics are out of my hands.”
3rdNettydoon your son would qualify for further investigations and treatment in my area so encourage you to be persistent and seek a second opinion if you need to. I was very uncomfortable about doing this but felt I was only going to get sicker if I didn’t. The cognitive dissonance that came from one Dr telling me I was mildly deficient to another telling me I was severely deficient to the point of also needing an iron infusion was extreme!
I joined the PA society and called their helpline - their advice has proved invaluable. 🌸
As stated in my reply, NICE guidelines. It is a guideline, a GP Practice and Health Board/Trust DO NOT have to Follow them.
They have their own Policies, Procedures and Treatment Regimes. I have explained the Bureaucracy that occurs.
In South Tyneside and Sunderland NHS Foundation Trust, vitamin B12 levels have to be under 115 mg/L.
In my Health Board the level is 130 mg/L.
Now, people on here do not necessarily understand what Foundation means before the word Trust. It is regarding an organisation being more Autonomous and have a greater degree of independence away from Government control namely the Department of Health and Social Care.
Who are NICE ? They are an executive public body, in England, of the Department of Health and Social Care.
Trusts and Health Boards are Businesses with a Top Dog and a Board of Executive Directors. Foundation STATUS is on a par with Trip Advisor’s 5 Stars for a Hotel.
Note :- The Attitude towards 3rdNettydoon‘s can be, We do not want that Riff Raff here.
People on here need to understand the Hierarchical Structure to appreciate why People are denied treatment.
Thank you so much for this information. We did wonder if the doctor was thinking about losing his job if he gave out injections. He actually said he couldn't go against this ruling. Our doctors and nurses must feel threatened and afraid of making professional decisions.
It would make sense that, after investing in, and training these people, those in authority would trust them to at least know how to make a reasonable assessment of one of their patients, and be allowed to give them treatment that, in their professional opinion, is what their patient needs.
When I see a young doctor working in placement on the final stages of their long training, I see people so keen, so destined to do good and to be the best help they can to patients. This comes across strongly each time.
It must be soul destroying for them to discover that this will, in lots of ways, be hampered by red tape and rulings that can be far removed from their personal, original aims when starting out to train as doctors and nurses.
All jobs need monitoring, some more strictly than others, but this is undermining them from making decisions based on said training in order to support the people they originally set out to tend. Seems extreme to the point of making the lengthy, costly training somewhat over the top and seemingly not that necessary.
I value our doctors and nurses very highly. Always have done. I just think that they need to be deemed as capable of making decisions whether as individuals or through discussions with other professionals, even if the results finally mean going for 'higher' input after all. Much better, in my opinion, than undervaluing and demeaning them.
Sorry if I am misunderstanding necessary guidance.
You are correct in everything you write. I have seen the young ones come in and they are so motivated, keen and want to make a difference.
‘he couldn't go against this ruling’
See, the problem for me was because in my Bio, I have written I was a Civil Servant. So, Managers tried to collar me, I had covered myself prior by filling in Forms. Who is responsible for Clinics, Hospitals, Surgeries being so short-staffed ? It was not my fault but THEY certainly knew about it.
I shuffled paper, number crunched for a living prior and was a Personal Assistant to a Big Wig. His Department was Finance and Commissioning. Not for Health Care. Sorry, it is NHS England.
Hi there I have low B12 and folate! Now on 3rd Dr discussion F2F (my GP) My Intrinsic factor antibodies are negative! But I still have symptoms! Anyway I asked for a prescription of B12 ampoules to SI and my Dr said that I don’t have the criteria? I said I’m not asking for a morphine prescription! Just B12 ampoules and they’re not expensive! She said she is reluctant as they get audited regularly! And I said to her that she is a partner in the GP practise can she not make decisions? She said she will have a word with a haematologist…. Ps I have not heard back as yet…. So best of luck 😔
Big turnaround regarding New level of 115 before entitled to B12 inj
My son was contacted by doctor. He said he didn't think what he has is Irritable Leg and that he should see another doctor, a partner in the practice and he actually gave him an appointment.
This doctor asked my son to explain what he was feeling as he thought he knew what was wrong. My son explained and the doctor asked if he was on B12 Injections. The outcome is loading doses start on Friday followed by three monthly injections.. We are so relieved at this outcome.
We don't understand why this became such a stressful situation. Is it possible the first doctor was worried that B12 Injections should be given but was afraid of these new guidelines? Has he needed the senior doctor to deal with this? Very puzzling but extremely upsetting and worrying for my son.
Thank you all for your responses. I love/need this forum.
I also found that GPs react very differently when faced with the same problem. Even in the same surgery. If your son has got a GP that actually understands his condition and treatment, for the sake of continuity, he should ensure that this one is the GP who always deals with him from now on.
1) At [time] on [date] phone appointment with Dr [x] re: Re : Restless Legs. Plan -
I) Appointment with Partner [Dr name ] in [GP Surgery ] at [time] on [date].
II) Loading doses of 1mg/ml of Hydroxycobalamin I.M. Every Other Day to commence Friday 8 December 2023 at [ time] in [ GP Surgery ] for 2 weeks.
Add ons :-
III) Consider joining Pernicious Anaemia Society.
IV) Consider taking Multivitamin and Mineral.
V) Christmas present for son, a book on P.A/B12 deficiency. Martyn Hooper MBE’s Pernicious Anaemia: the Forgotten Disease: The Causes and Consequences of Vitamin B12 Deficiency. So that your son understands the Poor recognition, treatment of this insidious Disease.
In your reply, you have written Outcome. These are Measured and Quantifiable which are used for Data Analysis Units and so forth.
1) Last year at time on date vitamin B12 was 163 mg/L analysed by [Name on Print Out] at [Laboratory, Hospital ].
2) At [time] on [date] blood tests reviewed by [Dr name ] in [GP Surgery ] at [time] on [date].
3) At [time] on [date] appointment with [Dr name ] in [GP Surgery ] prescribed antidepressants. Etc. etc.
However, his SF-8 Health Questionnaire which is a Statistical Analysis Tool is the following :-
1) Physical Component Summary Score.
2) Mental Component Summary Score.
3) Physical Functioning.
4) Role physical.
5) Vitality.
6) Social Functioning.
7) General Health.
8) Mental Health.
9) Bodily Pain.
10) Role Emotional.
As you can see, too much weighting was placed upon your Son’s Mental Health. Generally, researchers and analysts collect SF-8 information from Groups of people and apply Standard Deviation.
Tell him, it may be about 6 months before he can Catch some waves. Currently, he is suffering Wipe Out.
That's a good start at least, some progress. As others have mentioned, injections should be every other day until no further improvement with neurological symptoms. That is good practice endorsed by the BNF.
He won't get that on the NHS by the sound of it, so I'd go along the self-injection route. He could ask one of the nurses to teach him or learn how to himself with the forum's support. Or if he can get to Cambridge/an online consultation and a clear diagnosis with an expert (in iron too), that's another option. He can also teach you how to inject safely. Message me if you want his info.
Thank you but we are in North England so too far. I'll see how it goes because my son thinks doctors shouldn't be questioned, especially not by his mam! I will bide my time.
I'm up north too and had an online consultation with him for the same reason. Doctors have to be questioned sometimes, especially when it concerns biochemical matters - they have no real training and know very little about B12 deficiencies, as virtually all PAS members have learned through experience. Adequate treatment is vital for your son to fully recover - that will need to continue, it cannot wait.
At the very least, you should be given a copy of the documentation.
Suggest you put in a Freedom of Information request for that so that you can see what they claim to be working to. And, if that is what it says, start to work to get it changed.
I have no idea how to approach this. My son is thinking that an injection every 3 months is going to do it for him. I'm not convinced because I think his B12 level is very low and that treatment should've been given last November when it was 163 which was within the then range of 150-900. He has been unwell at an increasing pace for too long. I also think now, just one year later, future patients are going to be forced to wait, untreated, until their B12 level is less than 115 is unfair, uncaring and dangerous. I'd love to see if this could be reversed.
The worst thing about this in my mind, is that this level has been decided upon by an official body, with very little to no consideration for patients who are supposed to be the first concern of these decision makers.
I'm very wary but will try to get attention drawn to this reckless moving of the goal posts.
I am willing to accept any correction of details in my post.
Either you, or someone on your behalf, writes a letter (or email) to the body and asks for the information stating that it is an FOI request.
If you want to separate yourself from the request, best to ask someone else to do it. Your name will appear alongside the request in public if you do it yourself. (There might be ways of ensuring anonymity but so much easier if if someone else does it.)
There is a bit to find out - but far better to read these links and decide than for me to try to put together the fragments I know. But if there is something you think I would know, please just ask me.
so sorry to hear this. Maybe try B12 tab supplements or find a salon that offers the injection though either way you will have to pay yourself. Good luck.
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