Just wanted to offer my perspective but please do not take my words as too strong.
I think the key issue to reflect on is what you want to get out of issuing a complaint. If you know the outcome you want, you'll probably fight harder to get it.
If it is for peace of mind or to give 'strong feedback' to ensure it does not happen to others, then it may be worth pursuing. Generally, this has a window of about 12 months to do. The end result will probably be a letter to say 'it's been looked into' and a denial of matters.
If it is for compensation, you can attempt to sue the NHS. This may give you financial compensation for any losses (loss of work/income/abilities/health etc).
In my experience of B12d, ignorance is endemic in the medical profession. Some doctors are humble enough to admit they 'don't know much' about B12. Others aren't. So it's rare that someone more 'in the know' about B12d will see any complaint and raise the issue of malpractice or whatever. Because they don't know that there's wrongdoing. Because no-one in the medical profession understands it.
Ultimately, B12 deficiency and many other nutritional deficiencies are not known about or understood by anyone. If they were, we would not be seeing young, naive people going vegan because they 'would never kill an animal'. They will soon be suffering from malnutrition or even PA.
As I said in my post, I would prefer a healthy debate into the system now in place.
I dont need to make a complaint !, No good would come out of it, and now the surgery have detailed MRI scans the evidence is there. I have nothing more to prove,and rubbing there noses in it is futile, just causes friction all around. As you stated the ignorance re B12D is endemic !
So I agree with everything you say.
There is no way I would get any satisfaction at all if any of the Doctors were to have their careers ruined.
As for compensation ... No ...
The only people that benefit from it are solicitors and barristers.
Well, I believe the only cure to ignorance is enlightment.
Doctors are not taught (much) about nutrition. So they make things up, like this:
"Some patients will have had a diagnosis of pernicious anaemia. The loading doses which everyone has to begin with have effectively treated the pernicious anaemia, by flooding the body with B12, 50% of which is stored in the liver and used up as required. The 3 monthly injections which follow are simply a precaution to stop the pernicious anaemia coming back. As stated, the initial loading dose will have created sufficient levels and stores to take us though this difficult time without ill effect."
Do loading doses treat pernicious anemia, with half of it going into the liver and 'used as required'? Surely PA means you can't get b12 from your liver?
Doctors have 10 minutes to listen to you and diagnose you. My call with the doctor, when I was on my knees and neurologically challenged, took 25 minutes. That's because he did not get that it was b12 for quite some time. Neither did the 2 previous doctors I saw.
I would be interested in data to show the number of people who present with B12d each year. Because the only experience doctors have is their experience of patients with B12d. Because they are not taught it in medical school .
It is a simple vitamin deficiency that you treat with injections and top up from time to time.
I'm sorry to hear that. It's a struggle at the best of times, but when you're so unwell it seems particularly unfair to not get correct treatment.
According to Dr Chandy there is a short window of opportunity to treat B12deficiency and get full reversal of symptoms. And I believe that anyone who misses this can still recover, but they will be in the slow lane. Those fortunate to get correct treatment without delay may be instead in the 'express lane'. Yet, your common or garden GP will not know this. All they know is that they need to test your levels, like a science experiment, and then they have the data to use to consult their GP handbook. Then they offer the treatment.
Of course, this approach is something out of the 1800s. And there are no specialists around for guidance since haematologists and neurologists are mostly in the dark too.
But once you've had your 10 minutes and treatment that 'got your levels up in range', the door is closed. Next customer please. No thought, no consideration for symptoms, 'it's all in your head'.
But what if medical science was COMPLETELY turned on its head by putting nutrition at the heart of it? If Dr's trained in nutrition, it would change everything. Literally everything. Food would be prescribed as medicine and dietary plans would be used to get someone back to where they need to be.
What is completely shocking to me is that there is no standardised and accepted level of deficiency. So how can you be back to full health, if the deficiency is only determined by ranges in each area? Yet doctors only use numbers as their guide.
The next great breakthrough will only come when enough Doctors stand up to say that diet and lifestyle are the critical factors in health.
Until then, we will continue to live in a world where painkillers are prescribed to 'help lessen the suffering'. And the world continues to eat processed, toxic food that is destroying our cells and leading us to disease.
"Dr Chandy short window of opportunity"That is one reason I have been injecting him, without the GPs knowing (they will know by now through the Specialist). We have roughly a three month window to cure the demyelination !
Please don't panic. You can still heal nerves with regular injections. It takes time and patience. It is not a missed opportunity, it is just a rare opportunity. Hence why I believe we assume 'everyone's recovery is different', but in reality I think it's more that some lucky people will jump back quickly if they're treated correctly.
For the rest, recovery is still very much possible. It just takes longer and needs alot more patience. So you have plenty of time to recover the nerves if you still to a treatment schedule.
I am very patient, the other half is not, he wants to go back to what he was doing before...to no avail and making things worse.. The Specialist told him off (ha ha, I was accused of nagging him).Anyway, he is alot calmer and alot less troublesome. I will continue doing what I am even if it means I jab him when he is asleep. He has made enormous progress from sleeping on the sofa to where he is now .
‘Young naive people’ will hopefully have done their homework and learned to supplement with B12. I too would never kill an animal and would no more eat a cow, pig etc than I would my own dog or family member.
Sadly, my experience is that no-one who is taking on a plant-based diet is supplementing anything. So we can hope, but the reality is, is that it's not happening.
Entirely your prerogative not to eat a member of your family. I wouldn't either.
But, malnutrition is a risk factor for vegan diets and it's high time we started calling this out. It is people's health I'm concerned with.
I agree totally but what support do patients have these days ? I have a case open at the moment with pals - they make it such hard work you begin to wonder if it is worth it.
It might be an idea to bat what you would like to see as an outcome to your MP (not Boris) 🤪 Without foundations we have little solid grounding to work with. Pleased to hear your partner is supportive .
Jillymo, I have read many of you posts, I understand your frustration, venting your anger etc. You mention you have a case open at the moment... and the statement is it worth it. My answer .... in one way yes .... You have highlighted a problem within the NHS, the end result will be at best "lessons learnt". My other answer .... is no .....The stress in making these complaints is detrimental to your recovery.
I did involve my MP, John Penrose some time ago, who was very pro-active. He contacted the Minister of Health at the time, who apparently wrote to NICE sharing my experience and frustrations. They replied to say that my experience and frustrations would be seriously considered as they discussed the new guidelines. Hmmm.... not sure I think that was necessarily the case, however, I truly think that we do need to lobby our MPs to ensure our voices are heard. No way would NICE have replied to me personally as they did to my MP.
Good for you and wonderful to hear you got a responce. I think it depends on the MP in question - mine just sent me a load of facts and figures telling how they are improving the NHS system. 🤔
The Nice guidlines are anything other than satisfactory but I have heard in the near future these will be looked into ! I wait with baited breath.
Sorry I didn't rely sooner I was up the hospital haveing nerve and muscle testing - stupid neuro labelled me with functional overlay so had to make a complaint. He will eat hummble pie by the time I have finished with him - we need to educate these imbaciles.
I'm afraid MPs are like Drs and consultants good one's are far and few between. Must say both the Dr and nurse who did my nerve and muscle testing yesterday were very professional which made a refreshing change - I was actually treated with dignity which made a refreshing change.
I commend your positive attitude! I think a lot of us have residual something like PTSD from 1-being ill and untreated for too long and 2-dealing with doctors, so I do think it's exceptional you've been able to turn that around and look at it from a more positive point of view.
As for my input on the healthy debate - to add to point #3: I think a long lost IMPORTANT skill is the ability to take clinical signs and symptoms into consideration. Before we had blood tests, clinicians used their diagnostic skills. Now they only care about ink on paper. I suppose insurance has something to do with it too. I rewatched Sally Pacholok's movie the other day (not the documentary, the other one). It talked about how in the US, doctors used to regularly give people B12 injections as a pick-me-up. At some point, maybe the 80s? - the insurance companies started cracking down and now they only give them in cases of overt deficiency as defined by a blood test.
I agree on all your other points 100%. Especially access to old records. In this day and age of electronic records, it's inexcusable that historical data isn't available. And you're not even talking about decades ago - just more than 2 months. A real travesty.
I do find it unfortunately that family doctors don't exist in the UK. (Touching back on our conversation from last month)... In Belgium they have implemented a "global medical file" system that attaches you to one fixed GP. If you accept to be part of that, you get a discount on the doctor's appointment fees. They're trying to encourage exactly what you're suggesting - one doctor who tracks the patient. (If you don't join, nothing really changes, your records are still available electronically, insurance is still valid, but there's just no one medical point-of-contact for you).
One last point I would add to your list: availability of injectable B12 OTC. You can get it OTC in at least half of europe (for what that's worth to the UK government these days), Canada, Australia, the Middle East, etc...
I can imagine that there were many opportunities to catch B12D in both your cases. Would be interesting to map the various failures throughout time to the various fixes/changes that would have prevented you and your partner from falling through the cracks.
"I think a lot of us have residual something like PTSD from 1-being ill and untreated for too long and 2-dealing with doctors"
Yes...went through severe trauma trying to get treatment/diagnosis.
Jade, How are you ? I hope you are as well as can be !
You have a magic touch in being able to put pen to paper and explain things far better than I can. I think it's probably down to my frustration over the last 8 months.
It's good to read Belgiums stance on G.P.s and alotted Doctors. The one Doctor I use to see, was very placid, calm and would listen, Ring him up and could discuss blood results etc, Iron up ..... keep going with it .. he would say! ..... Sadly retired two years ago, now its locums and part time doctors, they have two practices, and flit one to the other so not the best solution. Other than that it would be over 10 miles away.
I have signed the petition to get B12 over the counter and lobbied parliament ... it will probably next century before progress is made.
I was talking to the Specialist about B12 .... His nephews always inject prior to doing sport !!!! My Mouth was wide open at this point.... I also remember Martin Hooper saying about he was contacted by a sporting body asking if B12 was a drug.
Hi SallyAnn doing ok thank you! Just getting ready for the colonoscopy tomorrow 😬
I hope you are doing better, mentally and physically, and that hubby is being more cooperative. Hopefully as you get more distance from events, you will be able to approach it more clear headed. Stress is not to be underestimated as I am sure you know.
Injecting prior to sports just like that!!?? Wow my jaw has hit the floor too 😮
Sorry to hear about the good doctor. It's a challenge to find one you click with let alone one that knows what they're doing.
Best wishes to you as well, and as always, onwards and upwards !
Colonoscopy ... yes ..... at least by now you are over the worst, the preparation!! Good luck for tomorrow not the nicest examination, but dare say they have seen far more b...ms than we can imagine.
It seems to me that the health service has a whole has now become completely "reactive" to patients ailments instead of adopting a "proactive" preventative stance.
This is is without doubt going to cost a hell of a lot more to finance in the short, medium and long term.
The aerospace industry, particularly in America, were willing to show the medical authorities the way on proactive preventative methodology, but it seems the same if it has been offered in the UK, has been completely ignored.
One has to question the overloaded, top heavy management system that has been allowed by over funding in the wrong areas of the NHS.
Hi, from my perspective having made a formal complaint myself I tried, in this order, GP via practice manager (they were a married couple, so that didn’t get me anywhere) next I tried local Care Quality Commission, who directed me to NHS England. I found that involving my local MP was worthwhile, as public bodies must then respond in a specific way. This resulted in an interesting response from NICE in July 2019, not about my complaint specifically, but acknowledging that ‘we are developing a guideline on pernicious anaemia’. Basically I still didn’t get anywhere, changed GP, currently not receiving B12 injections, taking oral supplements & would only have blood tests if I asked for them based on symptoms.
I am sorry to read that even efforts to approach your situation at the time highlighting problems etc resulted in as you say "Basically I still didn't get anywhere".Have you thought about buying your own and injecting yourself ?
I am concerned that everybody coming here explaining their stories and the lengths people are going through just to maintain a healthy life. IT IS SO WRONG.
If the NHS do not want me, you and everybody good health then PLEASE give us the option to buy over the counter in this Country.
I was misdiagnosed on two occasions, both when the problems seriously affected my working life. It was actually the same GP, one who became ‘my DR’ and I liked as a person. The second time was the worst and I have always reckoned it cost me a large amount. My son was in the early years of his practising as a lawyer so we discussed the possibility of trying to get recompense. He had some experience then of medical complaints. In neither of the misdiagnosis did I have sufficient evidence to make a successful case. Plus both cases were eventually rectified by the same GP and or practice as i was monitored by them.
It is always a matter of opinion, even with test results, and as the GP is doing something, even wrongly, they are using their best endeavours.
I do remind them, from time to time, of former mistakes and I don’t trust any of them so check what they are doing.
• in reply to
I am glad we don't live in China or Russia, In that even though we are being monitored we still have the chance to voice our opinions. Just imagine the amount of prisons they would have to open to accommodate us !
Anyway getting back to you comments, I agree with what you say !
A relative phoned this morning to ask about the other half, I explained the situation and challenge him/her
You work for the government and you know what you are allowed to say and what your NOT. ...... I wont repeat the reply, but I am sure most of you will know.
I've trust readingvthfough but I'm a bit tired and couldn't concentrate on it all, so sorry if this is off piste.
If I've understood correctly and you don't wish to submit a complaint as such, could you do a tight outline of the facts and send to the Chief Exec of the CCG and their PALS, and to the GP and their practice manager and ask for a joint meeting to discuss past issues and how to proceed going forward in lieu of making a formal complaint? You can CC this to anybody you like, given that it is your document - the consultant, MP, PAS if you're a member, Healthwatch, any other patient advocacy group that you may have involved. It may be worth an initial chat with Healtwatch in your area first, just in case there is any work ongoing, and to see if/how they can offer support. In one are of the country Healthwatch did some fantastic work with patients wanting T3 prescribed.
Many thanks for your comments, I was in this position years ago. Called to a meeting with doctors, there was 10 or 12 at the meeting, a complete surprise to me, and to be quite honest very very intimidating .....
I would like to see a more open, honest approach.
Take for instance you have a health Insurance, you fill it in, then years later you make a claim. Its rejected based on medical records ... records of things not revealed to you because of possible errors. We are not even aware of consequences regarding diagnoses of any condition unless we investigate it ourselves.
Its is a tricky subject .... but also interesting in the fact others have taken correct steps in making complaints to no avail. ....... at least we dont smash surgery doors or attack the nurses and doctors !!!
So, yes I do think it’s worthwhile making a complaint to those in the ivory tower.
I feel the most important issue is that it does not come from an emotional place. Just facts and statements. Your first draft, has everything in, calling people’s names, let out emotions, swear and cry. No good will come of this.
Walk away from that document for at least a week if not two.
You want them to know there is lack of knowledge, education, training.
The implications of having this illness.
The consequences of late diagnosis and treatment for you and hubby.
You wish for your case(s) to be used as a learning opportunities for clinicians.
You are aware through social media, the PA Society that your case is not isolation.
You are studying many aspects of science.Like you I am an introvert not naturally gifted with the "gift of the gab".
One wonders if our personalities have let us down in receiving correct treatment, therefore having a far worse outcome and experiencing far more symptoms than alot of people.
Definitely being introverted worked against me in my younger years with regards to receiving healthcare and I had faith in doctors. That has totally changed.
I learnt social skills for a change of career in my late thirties so in a ‘work’ environment, people don’t believe my temperament. Colleagues used to get very confused when I said no to socialising with them.
With regard to studying science, just building on previous knowledge. In my teenage years, it was always sports and science. So, my nearest & dearest have always been male. My first ‘attempt’ at a degree was particularly ‘nerdy’. 🤓
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Reply from my local ICB
Vitamin B12: Side Effects and Cautions in Relation to Pre-Existing Health Conditions. 
A victory with my NHS GP! 🥳
Looking for advice
