Are your vital B12 injections being stopped? FREE help options here….

If your treatment is being restricted or stopped altogether, hopefully there will be some help options for you here.

The Letters….
There are letters being sent out to patients, some of whom have received B12 treatment for donkey’s years, which announce that they will no longer receive their vital injections.

The incidence of this behaviour is increasing …..


This appears to be due to a cost saving exercise and largely happens without any prior consultation with individual patients to discuss their needs. (The cost of B12 is pennies but the time for nurses to give the injection appears to be the ‘saving’ here.)

Some practices are enclosing diet sheets for patients to learn how to make sure they are eating foods containing B12. Quite bizarre when these patients wouldn’t be deficient in the first place if they could absorb B12 from food.

The same old line about ‘too much B12 being harmful’ (which is complete rubbish) is often used in these letters and if the patient is unaware of the truth about B12 they might quietly comply with the harmful removal of their vital treatment.

Some letters state that the reason B12 injections are being stopped is “many patients are being over treated with this vitamin”. If this is the case in your letter, please ask them to provide you with this evidence.

Our clinicians need reminding that Pernicious anaemia (PA) is the very tip of a huge iceberg.

Some GP’s may incorrectly believe that only patients with a definite diagnosis of PA, those with a positive intrinsic factor antibody test, require treatment for life so seem to be using this as their treatment exclusion criteria.

The trouble is that the IFA test is not entirely reliable, it has a very low sensitivity and misses many that do have PA.

Obviously this ignores all those who require life long treatment due to other causes of B12 deficiency (of which there are many), thereby potentially causing great harm to the vast majority of their B12 deficient patients.

Cost saving?

These letters appear to be indiscriminate cost saving initiatives and are being sent out as individual practice directives and not that of the CCG (Clinical Commissioning Group).

You may know that each GP Practice is governed by a CCG and each CCG has a Medicines Optimisation Department – the role of this department is to “make sure that the right patients get the right choice of medicine at the right time”.

If you have received a letter stopping your vital lifelong treatment then why not find your CCG and talk to the Medicines Optimisation department about what is happening?

There are 211 CCG’s, find yours here.

You may find the  NHS Constitution of great help when discussing your lack of treatment.

This valuable document is for everyone and should be used in situations when your GP or your surgery is not making any sense regarding your treatment. I have added some parts of the text below but want to highlight the following sentence for you to bear in mind; 

“The Secretary of State for Health, all NHS bodies, private and voluntary sector providers supplying NHS services, and local authorities in the exercise of their public health functions are required by law to take account of this Constitution in their decisions and actions.” 

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The NHS Constitution sets out your rights as a patient, and explains the commitments the NHS has made to providing you with a high quality service. Organisations providing NHS care must take account of the NHS Constitution when treating you, so you may find it helpful to refer to it if you are thinking about making a complaint.

This Constitution establishes the principles and values of the NHS in England. It sets out rights to which patients, public and staff are entitled, and pledges which the NHS is committed to achieve, together with responsibilities, which the public, patients and staff owe to one another to ensure that the NHS operates fairly and effectively. The Secretary of State for Health, all NHS bodies, private and voluntary sector providers supplying NHS services, and local authorities in the exercise of their public health functions are required by law to take account of this Constitution in their decisions and actions. References in this document to the NHS and NHS services include local authority public health services, but references to NHS bodies do not include local authorities. Where there are differences of detail these are explained in the Handbook to the Constitution.

1. The NHS provides a comprehensive service, available to all irrespective of gender, race, disability, age, sexual orientation, religion, belief, gender reassignment, pregnancy and maternity or marital or civil partnership status. The service is designed to improve, prevent, diagnose and treat both physical and mental health problems with equal regard. It has a duty to each and every individual that it serves and must respect their human rights.
At the same time, it has a wider social duty to promote equality through the services it provides and to pay particular attention to groups or sections of society where improvements in health and life expectancy are not keeping pace with the rest of the population.

4. The patient will be at the heart of everything the NHS does. It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers. As part of this, the NHS will ensure that in line with the Armed Forces Covenant, those in the armed forces, reservists, their families and veterans are not disadvantaged

Improving lives. We strive to improve health and wellbeing and people’s experiences of the NHS. We cherish excellence and professionalism wherever we find it – in the everyday things that make people’s lives better as much as in clinical practice, service improvements and innovation. We recognise that all have a part to play in making ourselves, patients and our communities healthier.

Everyone counts. We maximise our resources for the benefit of the whole community, and make sure nobody is excluded, discriminated against or left behind. We accept that some people need more help, that difficult decisions have to be taken – and that when we waste resources we waste opportunities for others.

You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences.

  • Quality of care and environment:
    You have the right to be treated with a professional standard of care, by appropriately qualified and experienced staff, in a properly approved or registered organisation that meets required levels of safety and quality.

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Patients with B12 deficiency are regularly discriminated against.

You can see that this powerful and useful document can be employed to protect both you and your treatment.

If your particular GP is unhelpful, could there be another in the practice who you could see instead?

It is important to understand that many of our clinicians receive NO TRAINING whatsoever in B12 deficiency. Some receive a little, but what they may be taught is not necessarily up to date – or their training focused solely on PA (pernicious anaemia) – and the frankly ridiculous notion that anyone without a definite diagnosis of this or the presence of anaemia does not require treatment.

It is not the fault of the trainee doctor or nurse that this vital education is missing – but countless patients have provided a valuable opportunity for CPD by providing information for those in qualified to be in charge of their care. Many times this is ignored.

When doctor’s don’t know best….

I know how difficult it is for patients to challenge their doctor regarding treatment, but if you, or someone you love is being desperately under treated for this vitamin deficiency then it is essential that you, or someone close to you, takes the bull by the horns and speaks up as firmly as possible.

I hope the NHS Constitution will help you to do this.

1. You have to ignore the idea that you are upsetting the doctor, or that you are insulting them by questioning poor decisions about your health and wellbeing.

2. You have to believe doctors are no different from you, they have just learnt different things, read different books and passed different exams and that is all.

3. You have all the expertise on you, how you feel and how your deficiency effects you. You have to not be shy about sharing this in the face of such ignorance.

Ask yourself how you would challenge a joiner who mistakenly removes joists that make your roof safe?

Or a plumber who’s poor workmanship means that carbon monoxide is leaking into your bedroom?

You have to rid yourselves of the idea that the ‘doctor knows best’ when you know that their actions are doing harm.

You are not a lesser being than your doctor. You absolutely matter.

 

If you need help with complaining for FREE you can contact your local council or local Healthwatch  team to find out about independent NHS complaints advocacy services in your area. Complaints Advocates may help you to write a letter, attend a meeting with you or explain the options available to you.

If you have already complained to the GP, the Practice Manager, the CCG, NHS England, and are still unhappy then; 

You can contact the Parliamentary and Health Service Ombudsman (PHSO) which makes final decisions on unresolved complaints about the NHS in England. It is an independent service which is FREE for everyone to use.

To take your complaint to the Ombudsman, visit the Parliamentary and Health Service Ombudsman website or call 0345 015 4033.

You can of course complain to you MP and ask for help, some will oblige, others will direct you to NICE or NHS England.

Why not print this blog post out and help your GP or advocate to understand the situation better?

The home page of the site helps to show the issues facing patients; www.b12deficiency.info

If you would like to share your letter too, please email me at tracey@b12deficiency.info. Andrea MacArthur is collecting information in support of her petition.

If you need support, please join www.facebook.com/groups/174928999276739.

Very best wishes

Tracey

Please stop treating vitamin B12 deficiency as the poor relation to pernicious anaemia, this discrimination can seriously harm patients!

Autoimmune pernicious anaemia (PA) is just one of many causes but it’s clear that many doctors consider it to be the only serious cause of B12 deficiency and therefore the only one worth treating with B12 injections. This is due to lack of education on this subject which for most, is usually lumped in with anaemia. It is important to note that anaemia (macrocytosis) is not always present in B12 deficient patients.

In fact ALL causes of this debilitating condition require correct and adequate treatment and it is ALWAYS SERIOUS if it remains undiagnosed and untreated. Remember this condition attacks the central and peripheral nervous system, all body systems and all ages, not just elderly women. B12 is vital for the production of red blood cells and for DNA synthesis.

It seems the majority of doctors – worldwide, have only really learnt about PA and limited information at that. This means that they can neglect and under treat seriously B12 deficient patients. Up to 60% of patients who fail to achieve the correct diagnosis of PA due to the inaccurate diagnostic tests (gastric intrinsic factor antibodies & parietal cell antibodies), may be given an extremely poor deal along with those of us who do not have PA but are B12 deficient due to other causes.

The widespread use of Metformin and Omeprazole to name just two drugs, which stop absorption of B12 from food, cause untold damage. In the case of the diabetic drug Metformin, a doctor may confuse the tingling and numbness in fingers and toes caused by B12 deficiency with diabetic neuropathy, thereby potentially condemning the patient to serious and permanent nerve damage.

Neither of these drugs (and many others) fully warn the user, or the prescriber, on the ‘Patient information leaflet’ (PIL) of prolonged usage causing B12 deficiency.

Most patients with B12 deficiency will require B12 injections FOR LIFE, whether they have; coeliac disease, have had a gastric bypass, atrophic gastritis, Crohn’s disease, genetic mutations, advanced liver disease they all need injections and NOT the low dose cyanocobalamin oral tablets which doctors with lack of knowledge prescribe. Please note there are many more causes of this condition.

There are however some causes of B12 deficiency which CAN be temporary;

• Helicobacter Pylori – Provided this bacterial infection has been short-term and that
H-pylori lesions have not damaged the wall of the stomach or duodenum the patient can recover from this deficiency. If damage has occurred then B12 injections will be required for life.

• Parasites, such as fish tapeworms, or Giardia lamblia – ONLY IF these infestations are correctly diagnosed and effectively eradicated B12 deficiency can be corrected with appropriate treatment. Unfortunately parasitic infestations are hard to confirm as the diagnostic tests for these are also prone to flaws and frequently miss ‘host’ patients who would otherwise be able to absorb B12 from their diet.

Patients using stomach acid lowering drugs (H2 Blockers, PPI’s and antacids) have a secondary problem alongside a resulting B12 deficiency; a greater vulnerability to parasites which can unfortunately lurk undetected for years. These patients may have a very poor chance of naturally ridding themselves of these invaders who interfere with normal B12 absorption and compete for any B12 present in the diet. A healthy level of stomach acid is required to kill off these parasites.

Many B12 deficient patients, whatever the cause, are discriminated against and treated as second class citizens every day, in treatment terms, but a doctor who does not understand the myriad of causes of this condition could cause serious harm by assuming oral tablets will be absorbed and correct a deficiency.

If Type 1 and Type 2 diabetes patients were treated with the same level of discrimination, there would be uproar. Imagine doctors only allowing type 1 patients insulin but sending all type 2 patients off to simply look at a pig?

If you are a doctor who has learned only about PA and your patient does not test positive for IFA or PCA then you must still treat this patient properly whilst exploring other causes, and remember they may have a parasite that tests can’t detect.

•  If you can’t find the cause please remember this is not the fault of the patient

•  Treat their symptoms, and don’t assume it is ‘all in their mind’

•  Give them loading doses (6 injections over two weeks)

•  And if they have NEUROLOGICAL symptoms REMEMBER to continue their loading doses until their symptoms STOP IMPROVING, as per NICE and BNF Guidelines.

The difficulties with vitamin B12.
We discuss the management of patients who present with neurological manifestations of vitamin B12 deficiency; highlighting the fact that parenteral replacement is needed in such cases, even if the serum vitamin B12 level appears to be normal.
http://www.ncbi.nlm.nih.gov/m/pubmed/27009308/?i=5&from=b12

http://cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenariorecommendation:4

Information on PA Tests – http://www.b12deficiency.info/assets/pat-kornic-testing-f.pdf

http://www.b12deficiency.info/what-are-the-causes/

http://www.b12deficiency.info/what-to-do-next/

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

Please sign and share our petition;

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

The Ignorance of Vitamin B12 Deficiency in Children

B12 is tragically undiagnosed and misdiagnosed in children, for many doctors testing for this deficiency is not even on their radar so it’s missed. In the rare cases when it is tested, there’s every likelihood it won’t be diagnosed due to the dangerously low lab reference ranges in the UK – as ridiculously low as 110ng/L at East Lancashire NHS Trust. If a child is vegetarian or vegan and is not being given a supplement for B12 or was breast fed by a vegetarian or vegan mother who was not advised by their clinician’s to supplement B12, the risk of this deficiency is much higher.

In children who are heavily symptomatic and their deficiency it is not diet related, they may have B12 serum levels which are within range or even look like ‘healthy levels’.  It would be pertinent to carry out further tests such as MMA, Homocysteine and the Active B12 test please visit http://b12deficiency.info/testing.html  Sadly the B12 serum test is flawed but this information is taking it’s time to filter through to clinicians. See here – http://www.ukneqas-haematinics.org.uk/content/News.asp?id=40

If all symptomatic children with a B12 level below 500ng/L were treated without question and worried parents pleas for help listened to, this would go some way  towards halting the untold suffering that families cope with every day. Tragicaly though, many of these children leave their doctors surgery with drugs to treat a misdiagnosis of autism or ADHD. These drugs may or may not modify their symptoms, but the fact remains that deterioration caused by the lack of B12 will continue without the essential injections. A therapeutic trial of B12 injections would be extremely valuable for ‘within range’ symptomatic children. These should be carried out with continuous every other day injections in the presence of neurological symptoms. http://cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenariorecommendation:4

If a family has a high prevalence of diagnosed Pernicious Anaemia then it is quite simply ridiculous not to screen children in these families. In adults this deficiency, if identified early enough, can be treated effectively and simply, reversing all symptoms. In children the story can be very different, the nervous system is still developing and if this vital nutrient is lacking then the damage may be irreversible.

All health professionals need to eradicate the incorrect idea that this deficiency only affects women over 60. They also need to listen to terrified parents who know that their children are suffering from the same serious symptoms that they themselves, experience.

See the information below supplied by Sally Pacholok R.N. and Dr Jeffrey Stuart.  It would also be a good idea to buy their book – it really does save lives.

http://www.amazon.co.uk/Could-be-B12-Epidemic-Misdiagnoses/dp/1884995691/ref=sr_1_1?s=books&ie=UTF8&qid=1379713769&sr=1-1&keywords=could+it+be+b12

Signs & symptoms in infants and children

• Developmental delay or regression.

• Apathy – Irritability.

• Hypotonia (decreased muscle tone).

• Weakness.

• Tremor.

• Involuntary movements.

• Seizures (fits).

Ataxia (Neurological disorder affecting balance, coordination and speech).

• Anorexia and other eating disorders.

• Failure to thrive.

• Poor weight gain.

• Poor head growth.

• Poor socialisation.

• Poor motor skills.

• Language delay.

• Speech problems.

• Lower IQ – Mental retardation.

• Anaemia.

• Macrocytosis (large red blood cells) Note – need not be present!

Red flags of B12 deficiency in infants, children and Teenagers

If your child exhibits any of the following signs or symptoms, insist that your doctor tests for B12 deficiency.

• Movement problems, including difficulty in walking or writing.

• Mental changes – irritability, altered mood, poor memory, “flat” emotional tone, autistic-like withdrawal.

• Vision problems/abnormalities.

• Slowed weight and height gain.

• Leg pains or other abnormal sensations.

• Fatigue.

• Loss of appetite.

• An abnormally small head circumference in infants or toddlers.

• Apathy,lethargy, or irritability.

• Involuntary movements, such as arm waving in infants or toddlers.

• Tics.

• Grey hairs / premature greying.

• Areas of hypo pigmented skin in a Caucasian child and/or vitiligo, or areas of hyper pigmented skin in a black or Asian child.

• A rooting reflex after eight months of age (this reflex is usually absent after six months of age.

• A history of any surgery (including dental surgeries) involving nitrous oxide. This anaesthetic agent is often administered during dental work or surgeries such as insertion of ear tubes in children with chronic ear infections, can inactivate the body’s stores of B12 and cause severe neurological damage.

• Failure to thrive (poor appetite, poor growth and/or weight gain, general poor health).

• Chronic constipation.

• A diagnosis of developmental delay, autism, cerebral palsy, mental retardation, or other neurological disorder.

• Severe food allergies or sensitivities.

• A diagnosis of coeliac disease or gluten enteropathy.

• A thyroid disorder or other autoimmune disorder.

• A history of stroke or a diagnosis of arteriosclerosis.

• A diagnosis of any psychiatric or behavioural disorder including ADHD.

• A diagnosis of Downs Syndrome.

List Information provided with kind permission of Sally M. Pacholok R.N. & Dr. Jeffrey J. Stuart.

 

Please sign and share our petition

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

Please visit

http://www.b12deficiency.info/children-and-b12.html

Raising awareness;

http://www.b12deficiency.info/how-you-can-help/