The North Wales Branch of The Royal College of Nursing leads the way!

On October the 2nd 2017 the first North Wales RCN CPD Conference, included B12 deficiency thanks to
Dr Marjorie Ghisoni.

This fantastic CPD Conference offered a range of inspiring talks for the nurses in attendance.

I was honoured to be speaking on a subject I’m so passionate about and just a stones throw from my first school.


Dr Marjorie Ghisoni, Kate Parry, Tracey Witty, Susie Griffiths.

During my presentation – ‘How often is B12 deficiency missed?‘ I used case studies and documents which detailed the many issues B12 deficient patients face, including the limitations and low reference ranges of the serum B12 test and the harmful, restricted UK treatment regime. Explaining that severe neurological and psychiatric symptoms of B12 deficiency very often precede anaemia and the misconception that only patients with a confirmed diagnosis of pernicious anaemia need B12 injections.

It was important to make the point that all cases of B12 deficiency, whatever the cause, are serious and require correct treatment. Unfortunately letters like the one above are regularly sent out to patients to stop vital treatment with a lack of knowledge of the harm they will cause to the recipient.

It was crucial to me that delegates were given tools to help identify B12 deficiency in their patients. The presentation helped to give the nurses an understanding of how to advocate for their patients who were diagnosed but under treated and for screening for those they think may be at risk of B12 deficiency.

To finish off the morning, Susie Griffiths then spoke about her personal experience of B12 deficiency and it’s effect on her family.

If you’d like more information on the education of B12 deficiency, please email me tracey@b12deficiency.info

Afternoon Workshop

Most of the discussion in the afternoon workshop was centred around the shock these nurses felt that this vital information was missed from their training and that of most clinicians.

What they learned meant that there was a realisation that so many of the patients they work with are at huge risk of B12 deficiency, due not only to their poor mental health, but also due to the wide use of metformin in this group of patients.

It was a surprise to many that the reference range in North wales is amongst the lowest at 150 ng/L and that ranges all over the UK differ. They left knowing that this complex condition is simple and easy to treat and could clearly see why lack of education and current practice leads to common misdiagnoses.

These nurses, who are passionate about their patients well being, will take this newly acquired information into practice and the patients under their care will directly benefit. The RCN North Wales Branch is proud to be leading the way!

A few evaluations from the day;

Must learn more about this subject. Extremely interesting, very knowledgeable speaker who is obviously passionate about raising awareness of B12 deficiency. I had a lack of knowledge before this session, it has encouraged me to research this topic.

Would be good to present to a multidisciplinary forum including GPs and junior doctors.

I found your session absolutely fascinating and I will visit the website to further my understanding. I had no idea how serious B12 deficiency was, so much of what you explained/shared resonated with me.  Thank you for sharing your experience with us all.

So informative, I will be discussing this at our team meeting including our consultants – looking forward to looking at the website.

Inspirational and thought provoking and will consider in my work.

 

Another opportunity to raise awareness

In the evening the film ‘Sally Pacholok’ was screened for the villagers of Rhosneigr, Anglesey. If you haven’t seen this film yet it offers a great opportunity to be educated. Please follow use this link to watch.

Bangor University.

The following day Dr Marjorie Ghisoni had arranged for the second and third year Mental Health Nursing Students at Bangor University to be educated about B12 deficiency.  These students will now be able to apply this knowledge to their clinical practice.

From the questions taken afterwards, it was clear just how many of their lives were already effected by ignorance of the condition and the resulting under treatment of B12 deficiency. For so many, the new information provided a huge missing part of a jigsaw. It was heartening to hear that so many planned to further study B12 deficiency in their research projects.

The emails I received within hours of the talks are testament to the fact that if you give people the right information and tools they need, they can achieve a diagnosis and correct treatment. There’s now a whole new band of people badgering their colleagues, friends and family about B12 deficiency and this really is something to celebrate!

The hits on the website and the signatures on the OTC petition show just how inspired they were to make a difference.

It was an honour to be part of helping RCN Members in North Wales Nurses and our future Mental Health Nurses to take the lead in education of B12 deficiency.

Heartfelt thanks to Dr Marjorie Ghisoni for recognising the great need for this training and for making this happen!

Perhaps you need comprehensive training on B12 Deficiency and how if affects patients, or are looking for speakers at your event? If so please get in touch via; tracey@b12deficiency.info

Best wishes

Tracey
www.B12deficiency.info

Refs;

2015 Vitamin B12 Deficiency: An Important Reversible Co-Morbidity in Neuropsychiatric Manifestations
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4341306/

2015 Vitamin B12 deficiency: an important reversible co-morbidity in neuropsychiatric manifestations.
https://www.ncbi.nlm.nih.gov/pubmed/25722508

2009. Malignant catatonia in a patient with bipolar disorder, B12 deficiency, and neuroleptic malignant syndrome: one cause or three?
http://www.ncbi.nlm.nih.gov/m/pubmed/19820558/?i=1&from=b12%20AND%20catatonia

2009 Psychotic disorder and extrapyramidal symptoms associated with vitamin B12 and folate deficiency.(B12 deficiency-psychotic disorder, extrapyramidal symptoms in a 12-year-old boy)
http://www.ncbi.nlm.nih.gov/m/pubmed/19095695/?i=2&from=b12%20AND%20catatonia

2012. Psychotic disorder, hypertension and seizures associated with vitamin B12 deficiency: a case report.(“…..vitamin B(12) level should be checked in patients who do not have an obvious cause for psychosis, seizures or hypertension.”)
http://www.ncbi.nlm.nih.gov/m/pubmed/22027500/?i=2&from=B12%20psychosis%20AND%20%22blood%20was%20normal%22

2013. Association between vitamin b12 levels and melancholic depressive symptoms: a Finnish population-based study.(“The vitamin B12 level was associated with melancholic DS but not with non-melancholic DS.)
http://www.ncbi.nlm.nih.gov/pubmed/23705786

2013 Vitamin B12 deficiency presenting as an acute confusional state: a case report and review of literature. (With anaemia)(“Total resolution of the psychiatric symptoms occurred following parenteral vitamin B12 replacement therapy.”)
http://www.ncbi.nlm.nih.gov/m/pubmed/24250331/?i=1&from=b12%20and%20delirium

2013 Polyglandular autoimmune syndrome disguised as mental illness.(“The diagnosis of her endocrinopathies were likely delayed for many years due to the psychiatric disorder….”)
http://www.ncbi.nlm.nih.gov/pubmed/23632176

2013 Delirium as a result of vitamin B12 deficiency in a vegetarian female patient. (“The neuropsychiatric symptoms may be concurrent or precede the other symptoms.”)
http://www.ncbi.nlm.nih.gov/pubmed/23859997

2013 Cobalamin deficiency: clinical picture and radiological findings. (“Neuropsychiatric symptoms may precede hematologic signs”)http://www.ncbi.nlm.nih.gov/pubmed/24248213

2013 Decreased whole-blood global DNA methylation is related to serum hormones in anorexia nervosa adolescents.
http://www.ncbi.nlm.nih.gov/pubmed/24286295

2013 Vitamin B12 supplementation in treating major depressive disorder: a randomized controlled trial.
http://www.ncbi.nlm.nih.gov/pubmed/24339839

2013 Vitamin B12 deficiency presenting as an acute confusional state: a case report and review of literature.
http://www.ncbi.nlm.nih.gov/pubmed/24250331

2014 The neurology of folic acid deficiency.

(“In both deficiency states [b12/folate] there is often dissociation between the neuropsychiatric and the hematologic complications.”)
http://www.ncbi.nlm.nih.gov/pubmed/24365361

2016 Long-term Metformin Use and Vitamin B12 Deficiency in the Diabetes Prevention Program Outcomes Study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4880159/

2012 Metformin associated B12 deficiency.
https://www.ncbi.nlm.nih.gov/pubmed/22799121

2014 Vitamin B12 status in metformin treated patients: systematic review.
https://www.ncbi.nlm.nih.gov/pubmed/24959880

2016 Association between metformin and vitamin B12 deficiency in patients with type 2 diabetes: A systematic review and meta-analysis.
https://www.ncbi.nlm.nih.gov/pubmed/27130885

2016 Study of Vitamin B12 deficiency and peripheral neuropathy in metformin-treated early Type 2 diabetes mellitus.
https://www.ncbi.nlm.nih.gov/pubmed/27730072

2017 Developing a metformin prescribing tool for use in adults with mental illness to reduce medication-related weight gain and cardiovascular risk.
https://www.ncbi.nlm.nih.gov/pubmed/28747113

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.” 

_______________________________________________________________________

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