Dennis Skinner MP for Bolsover has signed the B12 OTC petition!! Will your MP do the same?

B12-life-web
Just in case you don’t receive the update for the petition, see below;
After a call out to B12 deficient patients to sign and share this petition (https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?)to get us over the 10,000 signature threshold I am delighted that we have 11,341 supporters as I write this update.
Huge thanks to each and every one of you!
Your sharing of this petition does a fantastic job of raising awareness of B12 deficiency every day.
Steph Whiting, a B12 deficient patient struggling to access B12 injections, sent the petition link to her MP, Dennis Skinner. Dennis was completely unaware of this very common condition and the awful predicament of under treatment that UK patients face, so he signed to show his support.
I badger my local MP and MEP regularly, but more help is needed and if UK and international supporters could take the time to email or tweet we can really make a difference in moving this campaign forward!
May I suggest Tweeters use the following;
@DennisSkinnerMP has signed this injectable B12 OTC petition http://chn.ge/1phNgE6, will you? #B12 OTC petition
Please target at the very least, the MP’s listed below via Twitter. (Twitter names listed below for your convenience).
David Cameron – Prime Minister
Jeremy Hunt – Secretary of State for Health
Jeremy Corbyn – Leader of the Labour Party
Jane Ellison  – Parliamentary Under-Secretary (Department of Health)
Luciana Berger MP – Shadow Minister for (mental Health)
UK Tweeters, please add your local MP and MEP to this list too.
You can find your MP’s contact details by using this tool;
and your MEP contact details here;- http://www.europarl.org.uk/en/your-meps.html
@jeremy_hunt
@david_cameron
@jeremycorbyn
@janeellisonmp
@lucianaberger
Please consider emailing too – there is a template at the bottom if you wish to use it,  please add your own experience/reasons for asking for support. You may care for someone who is B12 deficient so this may need re wording for your particular situation.
UK supporters please contact all the above and your own MP and MEP
Please email;
Jeremy Hunt –
huntj@parliament.uk
Jeremy Corbyn –
corbynj@parliament.uk
Luciana Berger –
luciana.berger.mp@parliament.uk
Jane Ellison MP –
jane.ellison.mp@parliament.uk
David Cameron- sadly no direct email address exists publicly so there is a form to fill in here;   http://www.witneyconservatives.com/contact
UK supporters – Perhaps you could give your local MP a call too?
Lets not restrict this campaign though – tweet, email or call anyone you can think of who may help to spread the word and make this happen.
Celebrities are powerful so let’s try to get them on board too!
Finally, when you receive your email replies please consider forwarding to me at tracey@b12deficiency.info
Again, huge thanks to all supporters – you are amazing!
Tracey witty
www.b12deficiency.info
EMAIL TEMPLATE
Dear *
Dennis Skinner MP, has signed this petition;
https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter? in support of UK B12 deficient patients who are unable to buy their life saving, Injectable vitamin B12 OTC. We cannot absorb B12 from food so injections are essential for life.
Most countries around the world allow their citizens to buy this essential, harmless injectable vitamin without prescription, from pharmacies.
Due to out dated NICE Guidelines and GP’s (and other health care professionals) lack of knowledge of B12 deficiency, many patients are restricted to just four B12 injections per year, even though the body needs B12 every day! This level of treatment is clearly nowhere near enough to maintain health and consequently many patients remain mentally ill, bed bound, cognitively impaired, and unable to work or look after their children.
Please sign and show us your support;
If you have the time to watch even the first 5 minutes of this film;
You will see just how devastating the effects of B12 deficiency can be. It is an easily treated, serious neurological condition but patients are very often dismissed, neglected and labelled hypochondriacs.
Just imagine the health care savings if you can help to make this happen.
For more information on this very common neurological condition please see www.b12deficiency.info
Yours sincerely

Understanding what it feels like to be B12 and folate deficient

Over the weekend I was ambushed by a sickness bug, I was in pain, exhausted and miserable with a screaming headache – however I knew it would pass and that I would be free of feeling like a rag doll in a matter of days.

It occurred to me that what I was experiencing would be just a tenth of what some B12 deficient patients suffer every day of their lives, particularly those who remain undiagnosed, misdiagnosed or indeed those who remain desperately under treated on the paltry 4 injections a year that they are allowed.

I consider myself incredibly lucky that my B12 and folate deficiency symptoms never caused me to experience chronic fatigue but there are thousands of people who live with this every day.

I have no children to look after, but can you imagine feeling like death and having to carry on and look after a family, hold down a job, function when it is almost impossible to breathe, think, walk or stay awake? Many struggle to hold onto their jobs and their families when they are not treated correctly.

When asked to describe how it felt to be B12 deficient a friend, Lynne Wood, described a scenario which perfectly illustrates this, she explained that if you were to tie a sack of spuds (potatoes) to the back of each leg, each arm and to the back of your head and then go about your working day it may come close to what she felt like. I am sure many will identify with this.

I heard an account of a GP being asked (in a social setting) if he gave B12 injections to patients who requested them earlier, his response – “It depends what they’re like”,  so he based medical judgement and treatment on whether or not the patient was to his liking rather than on the manifested pain and suffering. Surely this disgustingly sadistic approach is rare and the neglect B12 deficient patients face is usually as a result of ignorance.

What continues to floor me everyday is that thousands of B12 deficient patients are neglected and refused additional life saving B12 injections despite pleading for respite from their symptoms. I know of patients who are sent away for being even two days early for their quarterly injection, can you imagine this? What caring person in their right mind, would keep someone in pain and suffering when the treatment is so simple, cheap and effective?

This deeply ingrained ignorance which filters down from doctors to nurses creates a barbaric situation for patients.

A dog taken to the vets in such a terrible state might actually be put down – however we all know that a vet is taught far more about B12 deficiency than many of the doctors that B12 deficient patients encounter.

On a lighter note – although a little disturbing, someone wrote to tell me that the health food shop had run out of B12 supplements and so she was advised to take double the dose of B6……… Unbelievable!!

 

If you need an excellent support group please consider joining Pat Kornic’s group – https://www.facebook.com/groups/PAB12DSupportGroup/?fref=nf

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

If you want to be in charge of your own health please sign and share this petition – https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

 

Dumb and dumber with NHS money to burn.

As usual, I want to say that I acknowledge there are some clinicians who treat B12 patients correctly, this sorry tale below only refers to those who don’t.

See below another shocker of a letter sent to a B12 deficient patient whose doctor is perhaps hard of hearing and it seems, in need of a little reassurance from a Consultant Haematologist. Lets be honest, he just wanted someone else to reinforce his own ignorant stance.

image1 2

Here you can see that the GP has noted that his patient ‘developed symptoms which occur pre -injection and are relieved post-injection and is receiving the B12 injections every four weeks.’

Clearly I am no rocket scientist, however this statement is clear as day to me.

Put simply;

Patient is in pain and suffering, B12 injection is given, pain and suffering goes away –

With any other condition than B12 deficiency it might actually be that a GP listens to the patient, adds two & two together and thinks for themselves. (Actually it’s a similar story for thyroid patients too).

What should happen is this –

The GP makes the connection that the treatment given at a 4 weekly interval is just not cutting the mustard and so should think; let’s try every 3 weeks – or better still, I’ll ask the patient to tell me at what point the pain and discomfort return post injection and try and nip it in the bud for them by giving the injection way before the pain becomes unbearable.  Simple eh?

The reality is that those long years of medical training regarding listening to the patient and powers of deduction appear to go out of the window with B12 deficiency and two and two for many doctors, cannot be added up at all. They feel they have to call in the ‘big guns’ instead of making a decision all by themselves.

It makes no sense to a B12 deficient patient that such a letter even exists, it’s ridiculous and a complete and utter waste of time for all concerned, including the secretary and the postman.

The reason this letter does exist is because NICE Guidelines direct the GP to refer to haematologists;

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

For people with neurological involvement:

Seek urgent specialist advice from a haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

In my opinion, It would be far more useful to add (fully educated) neurologists and psychiatrists to this section of the guidelines since B12 deficiency isn’t a blood condition. Many patients never experience the enlarged red blood cells (macrocytosis) which lead to this mistaken idea that a haematologist would be best placed to treat a neurological condition.

So the consultant haematologist gives us the answer in the first paragraph but then concludes something entirely ridiculous in the rest of the letter – all that time at university and still not able to understand something so simple, it’s a travesty.

The haematologist doesn’t understand B12 deficiency at all, doesn’t understand that serum B12 blood values when on treatment mean nothing. They will almost always be what a doctor considers ‘normal’ even 4 -6 months post injection or even oral supplementation. This serum value does not indicate what is happening at a cellular level.

Both doctors completely forget the patient’s suffering and ignore what the patient reports.

The haematologist, clearly without any correct training on B12 deficiency regurgitates the same old rubbish peddled by so many clinicians;

no value in increasing the frequency of injections’ – Even though they solve the problem!

these are recommended to be given only every three months’ – Check again – this patient suffers from neurological symptoms so should be treated on ‘alternate days until there is no further improvement’ and then the maintenance dose is 2 monthly. (still not nearly enough for many)

she is being significantly overdosed’ – Completely impossible.

highly unlikely that this is related to B12 deficiency or B12 administration’ – I refer this dumbo to the first paragraph where the enormous clue lies.

The haematologist suggests, in their infinite wisdom, that the patient be referred ‘to a medical clinic for investigation’ – doesn’t this beggar belief??!

The cost involved in these unnecessary referrals just because there is a gaping hole in the curriculum for all health professionals is phenomenal, but it’s not the haematologists money being thrown down the drain is it? They still get paid for not being able to read, research or comprehend simple information and for taking the time to commit this rubbish to paper.  Outrageous.

 

B12 Reminders

B12 is required by the body every day

B12 is a water soluble vitamin

B12 is not addictive

B12 cannot be overdosed

B12 is not a placebo

B12 is essential to life

 http://stichtingb12tekort.nl/wetenschap/stichting-b12-tekort-artikelen/english/treatment-with-high-dose-vitamin-b12-been-shown-to-be-safe-for-more-than-50-years/

If you want a crash course in B12 deficiency click here;  http://www.b12deficiency.info/what-to-do-next/

If you think all clinicians need to be educated on vitamin and mineral deficiencies click here;

https://www.change.org/p/dr-margaret-chan-who-niall-dickson-gmc-make-the-study-of-nutritional-deficiencies-comprehensive-and-compulsory-for-our-doctors-in-10-years-of-training-our-doctors-may-never-study-key-information

If you think our treatment would be better placed in our own hands please sign this too!

https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

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

B12 and Thyroid conference 2015 – an enormous success, incredible feedback and a game changer!

I want to say a huge thank you to the fantastic four; Sally Pacholok, Lorraine Cleaver, Umahro Cadogan, and Dr Malcolm Kendrick – who all have more than one thing in common;

A passion for educating and exposing truth, unflappable tenacity and humour!

Sally Pacholok, as we with B12 deficiency know, is an inspiring educator who diagnosed her own condition and is completely dedicated to raising awareness of this condition. The vast amount of information Sally imparts in just 2 hours, is incredible.

Her time in the UK was spent working almost solidly and even during her sparse free time managed to help patients in a profound way. Anyone reading this who would like Sally to speak at an event then please get in touch, you won’t look back!

Lorraine Cleaver told us of her shocking experience of thyroid disease, her planned suicide and her road back to health after appalling treatment due to ignorance. She also recounted Jill’s story, which echoed her own experience as Jill remained undiagnosed with B12 deficiency and Graves disease for years. Jill was subjected to ECT (Electroconvulsive therapy) in place of what her body required. This presentation was profoundly moving.

Umahro Cadogan became so ill in his teens that he too had to become his own doctor. He has made it his life’s work to educate himself and others on nutrition and nutrigenomics. His presentation on methylation, a hugely complex subject, was expertly delivered making it accessible to all.

Dr Malcolm Kendrick talked about the shocking state of accepted medical data. He is the kind of GP we all want, sensible, caring, humorous. He sorts the wheat from the chaff and is determined to shine the light on the dark corners of medicine. I have followed his blog for years and if you don’t already, then sign up!

IMG_9888

Pic. Dr Jeffrey Stuart, Sally Pacholok, Umahro Cadogan and me.

Just a couple of hours after the conference emails started to arrive from delegates and I was stunned and delighted, here is the first;

“ Thanks for organising the excellent conference today. I was delighted to attend and learnt a lot and met some lovely people. The speakers were all very engaging and enthusiastic.

I don’t think I have ever been at a conference that so many people stayed until the end, especially on a Saturday! That is testament to the line-up you organised. Well done. I hope it makes a difference.“

 Dr J Younge –

Well, judging by my inbox there has already been a huge shift – the day really can be labelled ‘A Game Changer’!

Dr J Younge sums it up perfectly, the delegates were completely engaged right up until the end.

For those of you who attended you will know that there was an impressive (and surprising) number of health professionals across all disciplines who attended and who thankfully took the time to write;

“Congratulations on organising a really interesting day.

The speakers were excellent and inspiring and gave us plenty to think about!”

Dr S Williams

For those of you who couldn’t attend – I promise there will be more events in the future. (I have never done this before, but I really enjoyed it!)

It worked because of the quality and mix of the speakers, and because of the connection between all of the subjects. Those who came are now determined to make a change.

It was a fantastic day and I have learnt a lot about how to make it even better next time.

Heartfelt thanks to Dr Jeffrey Stuart and of course to Damian Witty.

Thanks to all who supported me in organising this event – you are priceless!

Tracey x

www.b12deficiency.info is my passion, highlighting the effect on mental health, fertility, pregnancy and children is a must.

 

If you want to help us to access Hydroxobalamin OTC please sign and share this petition.

Lets continue to work together, we will make a difference, please contact me if you would like to learn more.

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

The pernicious ignorance of B12 deficiency in patients with poor mental health.

Despite the general misconception that B12 deficiency only affects women over 60, this condition does not discriminate. It is those who train our health care professionals and consequently our health care professionals who do. The neuropsychiatric symptoms of B12 deficiency are many and as with all symptoms they can manifest at any age and in either sex.
These include –

• The unborn child
• Babies
• Children
• New mothers
• The middle aged
• The elderly

It appears that very few doctors understand the need to rule out this debilitating neurological disorder once a mental health condition is diagnosed. Of course there are many reasons for poor mental health but to ignore nutritional deficiencies is ridiculous.

One of the most common presenting symptoms of B12 deficiency is depression and yet the chances of a doctor exploring this symptom further to see if there might be a physical cause appears to be very slim.

How many children are incorrectly diagnosed with Bipolar, psychosis, depression when B12 deficiency is the root cause?
How many undiagnosed B12 deficient mothers find themselves devastated by post natal depression following nitrous oxide administration during labour?
How many cases of ‘early onset Alzheimer’s’ remain untested for this easy to treat deficiency?
How many newly diagnosed dementia patients have been taking metformin, or acid suppressants such as Omeprazole?
How many patients live in total confusion when all they lack is the ability to absorb vitamin B12?
How many stroke victims struggling physically and mentally because it never occurred to the clinicians to test for low B12?
How many students unable to complete their studies?
How many lives lost through suicide?
How many careers ruined?
How many lost livelihoods?
How many families broken?
How much money wasted on psychiatric drugs when a vital nutrient is the solution?
How many undiagnosed prisoners are ‘detained at Her Majesty’s pleasure’ for actions and behaviour induced by low B12?
How many patients hospitalised with eating disorders remain undiagnosed with B12 deficiency?
How many patients tested but by clinicians who fail to understand that the B12 serum test is inaccurate?
How many patients rattle with numerous antidepressants given in mega doses due to their reduced efficacy in B12 deficient patients?

The information below is taken from the ‘Fundamental Statistics on Mental Health 2007’  

All these statements and statistics have a potential relationship to B12 deficiency and we can only assume that these figures are perhaps even worse now…….

The Fundamental Facts 2007: The Latest Facts and Figures on Mental Health
http://www.mentalhealth.org.uk/content/assets/PDF/publications/fundamental_facts_2007.pdf?view=Standard

How many people experience mental health problems?
• The Office for National Statistics Psychiatric Morbidity report found that in any one year 1 in 4 British adults experience at least one mental disorder, and 1 in 6 experiences this at any given time.

• It is estimated that approximately 450 million people worldwide have a mental health problem.
• 1 in 4 families worldwide is likely to have at least one member with a behavioural or mental disorder.
• The World Health Organisation forecasts that by 2020 depression will be the second leading contributor to the global burden of disease.

 Suicide and history of using mental health services
• 42% of people who took their own lives in England and Wales were diagnosed with either a depressive illness or bi-polar disorder, and 20% had schizophrenia or a related disorder. 

Postnatal depression
• Post-natal depression, also known as post partum depression, is believed to affect between 8 and 15% of women. Post-natal depression is not the same as the ‘baby blues’ which are very common, but last only a few days.

Dementia
• Dementia affects 5% of people over the age of 65 and 20% of those over 80. About 700,000 people in the UK have dementia (1.2% of the population) at any one time.
• About 60% of dementia cases are caused by Alzheimer’s disease.
• About a fifth of cases of dementia are related to strokes or insufficient blood flow to the brain, these cases being known as vascular dementia.

Children and young people 
• The British Medical Association estimates that at any point in time up to 45,000 young people under the age of 16 are experiencing a severe mental health disorder, and approximately 1.1 million children under the age of 18 would benefit from specialist mental health services.


Older people 
• Depression affects 1 in 5 people over the age of 65 living in the community and 2 in 5 living in care homes. However, it is likely that only a small proportion of older people with depression are in contact with their GP or mental health services. 
• An estimated 70% of new cases of depression in older people are related to poor physical health.

The prison population
• 72% of male and 70% of female sentenced prisoners have at least one mental disorder and 1 in 5 prisoners has four major mental health disorders. 

People with poor physical health are at higher risk of experiencing common mental health problems, and people with mental health problems are more likely to have poor physical health. 
• Depression affects 27% of people with diabetes, 29% of people with hypertension, 31% of people who have had a stroke, 33% of cancer patients and 44% of people with HIV/AIDS.
• People who experience persistent pain are four times as likely to have an anxiety or depressive disorder as the general population.




Primary care
• Approximately 30% of all GP consultations are related to a mental health problem.
• On average, a person with severe mental health problems has 13 to 14 consultations per year with their GP.




Hospital provision
• The NHS spent about £575 million on acute psychiatric in-patient hospital care in 2005/06,188 about 68% of its budget for clinical mental health services.




Treatment and coping
• According to an online survey by the Mental Health Foundation, of those visiting their GP with depression, 60% were prescribed anti-depressants, 42% were offered counselling and 2% were offered exercise therapy. 




Medication

• In 2004, GPs wrote a total of 63.9 million drug prescriptions for mental health problems in England, representing 9.3% of the total prescription by volume.
• Approximately 2 million people of working age in Britain are currently taking psychiatric drugs, most prescribed by their GPs.




 

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Family doctors in England are to be paid £55 for each patient they diagnose with dementia, NHS bosses say.   (http://www.bbc.co.uk/news/health-29718618)

If we gave GP’s just £1 to test ALL mental health patients for B12 deficiency and then another £1 to treat that patient properly the cost savings could be phenomenal, not just to the NHS but to society as a whole. If only 10% of all the above statistics were found to be B12 deficient it would have a profoundly positive impact on NHS resources.

If you or anyone you know suffers with a mental illness, please have look at this list which is just the neuropsychiatric portion of the common B12 deficiency symptoms. You may be surprised and relieved to find that B12 injections could be the answer to restoring your own or a loved ones health.

• Confusion/disorientation
• Psychosis
• Post natal depression
• Hallucinations
• Memory loss
• Delusion
• Depression
• Suicidal ideation
• Mania
• Anxiety
• Paranoia
• Irritability
• Apathy
• Personality changes
• Inappropriate sexual behaviour
• Violent/aggressive behaviour
• Schizophrenic symptoms
• Sleep disturbances
• Insomnia
• Changes in taste, smell, vision, and sensory/motor function which can be mistaken for psychiatric problems

For more information please visit  www.b12deficiency.info/b12-and-mental-health/

Every part of society is affected by mental illness, and every part of society is affected by B12 deficiency. Our health care professionals need to keep this in mind, from midwives, to paediatrician’s, oncologists to psychiatrists. All medical disciplines need to be made aware of the facts.

Even those psychiatric patients who are known to be B12 deficient may still remain very unwell due to the high level of under treatment for this condition. Just four injections per year are not enough to repair those damaged nerves. Far more B12 is needed for this important job.
Unfortunately your doctor may be resistant to your request for testing for B12 deficiency.

Over the past couple of years I have been met with the following statements, from GP’s and psychiatrists;

‘They have no symptoms so it would be a waste of NHS funds to test for low B12 ’.
‘B12 deficiency does not affect mental health’.
‘Tremors and tinnitus are not cause by low B12’
‘They already have a diagnosis of Alzheimer’s and poor mental health runs in the family’.

It appears that once you have a diagnosis of mental illness you may be effectively tidied away and forgotten about.

And if you don’t have a mental health diagnosis your doctor might be keener to find one for you,  than to give you the vitamin you desperately need.

I’ll leave you with the letter I was sent following my request for more B12 injections.

Best wishes, Tracey

letter-1-14.08.28