The Great Evasion: Are Politicians Afraid of Straight Answers?

A Review of Questions Asked in UK Parliament about Pernicious Anaemia, B12 Deficiency and Anaemia.

Why Can’t Politicians Just Answer the Question?

In April 2025, another question was asked in UK Parliament about vitamin B12.

Lisa Smart, Liberal Democrat MP for Hazel Grove, asked the Secretary of State for Health and Social Care, what steps his department is taking to improve the diagnosis of vitamin B12 deficiency and reduce the number of cases misdiagnosed as (a) dementia, (b) chronic fatigue syndrome, and (c) psychiatric conditions.

The answer given by Karin Smyth, Labour MP for Bristol South, on 22 April 2025 was the predictable spouting of the NICE guideline on vitamin B12 deficiency, which failed to address the points raised.

I am not reproducing the MP’s answer because it is frustrating, out of touch, and misleading as to what is happening in practice. It looks a lot like the modern definition of “word salad”, which I increasingly seem to encounter in daily life, AND as we all know, there is no vitamin B12 in salad vegetables.

I made a list of all questions asked in UK Parliament about PA, vitamin B12 and anaemia, and decided to review them compared to where we are now. Initially, I typed up what turned out to be a 32-page rant, but I realised that no one except me and a few other “B12 passionate anoraks” out there would have the will (or the energy) to read it.

A heavily edited version appears below, but I’ve included links to all the questions and my comments in case you want a rabbit hole to dive down at some point. If you reach the end, do leave your observations too in the comments!

What is the Point of Parliamentary Questions?

In a democracy, the fundamental principle, with varying national processes, is that elected representatives serve the interests of the people. While change can be gradual, parliamentary action, public campaigns, lobbying efforts, scientific findings, and economic analysis collectively shape national and global developments.

Two idioms immediately come to mind when it comes to lobbying government for change:

He who has the gold makes the rules—By “gold”, I don’t just mean money. Effective lobbying takes time, energy, expertise, support – things that small charities and patients with Pernicious Anaemia and B12 deficiency don’t have in abundance. Timing and the volume of issues being dealt with also mean that even large, funded, and supported campaigns for change don’t make it through the process.

The squeaky wheel gets the most oil—Those who make their needs known most forcefully are more likely to receive attention or get what they want. Those who “squeak” loudest are often seen as having the most pressing needs. In the context of a government agenda, it can be difficult to get anything addressed that doesn’t bring the ruling party more “wins” from their voting public. The media (both traditional and more modern forms) plays a big role in what makes the most noise.

Strategic Campaigning is Key

A well-organised, targeted campaign is important. Building coalitions with like-minded groups brings strength in numbers and grassroots mobilisation of the voting public. In our case, as patients with actual lived experience, this is vital to make a change. PAS is working on lobbying activity in the UK and beyond, and using media, in particular social media, to raise awareness is a core part of its business plan.

Getting our ducks in a row—the third idiom in this article! I don’t think I’ve ever used so many idioms in one day.
As part of getting organised and being fully equipped to forge ahead with our lobbying activities, I conducted a review of the questions asked so far in the UK Parliament about B12 deficiency and Pernicious Anaemia. There are questions about the effectiveness of current diagnostic methods and treatment protocols for vitamin B12 deficiency and Pernicious Anaemia and concerns raised regarding the availability and administration of B12 injections. MPs have also enquired about the level of government funding for research into vitamin B12 deficiency including funding from organisations like UKRI (UK Research and Innovation) and NIHR (National Institute for Health and Care Research).

There are questions about the MHRA, and the laws regarding prescription-only medicines, and parliamentary discussions have addressed the need for greater public awareness and understanding of vitamin B12 deficiency and its symptoms.  

Essentially, the parliamentary questions reflect the concerns that patients and patient advocacy groups have about vitamin B12 deficiency, effective diagnosis and treatment, and the lack of research and funding.

There are more Questions than Answers

Tabling a question in the UK Parliament is a significant tool for MPs to hold the government accountable and seek information. A question’s “success” can be measured in various ways, and it’s often not simply a matter of whether a question gets answered.

The primary function of parliamentary questions is to scrutinize government actions and policies. Even if a question doesn’t elicit a fully satisfactory answer, it forces ministers to address issues on the record. Questions can reveal crucial data and insights that may not be publicly available; this information can be used by MPs, the media, and the public to inform debates and policy decisions. Tabling a question can bring attention to a specific issue both within Parliament and among the wider public. This can help put pressure on the government to act.

All answered questions are recorded in Hansard, and this means that the answers are part of the official record and can be referred to in the future.

Oral vs. Written Questions:

There are two formats for questions, oral questions, asked during Question Time, have a higher profile and can lead to immediate follow-up questions. However, due to time constraints, not all tabled oral questions are answered in the chamber, and they are subject to a random computer selection process. Written questions, while less visible, guarantee a response from the government.

A well-crafted, specific, and relevant question is more likely to elicit meaningful responses although, as you will see, even the most direct questions about B12 deficiency have often resulted in perfunctory, formulaic answers.

This is not to put you off writing to your MP, the more noise the better. Just bear this in mind when asking your MP to raise a question.

A Deeper Look into the Questions and Answers

Questions can be asked in the Commons and in Lords. Sometimes the questions are repeated in one house after the other. I read and reviewed every question and answer. The links and my comments are at the end of this blog post.

Some Observations

• We are still asking the same questions nearly 20 years later, very little has changed on the one hand. On the other hand, we are much better connected, have more access to research, have an engaged and informed patient group and a patient advocacy group who want to make a difference.
• With a few exceptions, the answers given are formulaic, show a lack of knowledge, understanding, empathy or care about the topic discussed. What is the magic ingredient that will tip the balance in favour of change?
• The government does not have useful or relevant data on B12 deficiency or Pernicious Anaemia and doesn’t seem inclined to get it, despite the vital importance of this vitamin to the national health.
• B12 deficiency research has not been centrally funded, and the government has ignored the importance of this vitamin to the detriment of public health.

The issue of lobbying for better access to vitamin B12 injections is nuanced. The law and regulations relating to prescription products add complexity—how can we simplify this to help patients? Allowing and encouraging self-administration of injections might lead to non-compliance and deterioration of health for many who are needle-phobic or unable to self-inject—isn’t there a way to reduce the burden on overstretched resources? How much more effort is needed to develop better education tools that can really change mindsets when we have already seen primary care largely dismiss NICE Guidelines and published research?

I can’t answer these questions, but I know we still have to try. As CEO of the Pernicious Anaemia Society, the weight of the uphill battle we face often feels immense, yet I cannot and will not stop seeking answers to these critical questions. Too many continue to suffer due to delayed diagnosis, misdiagnosis, and insufficiently frequent treatment.

Timeline of Questions

In the House of Commons
Anaemia – Hansard – UK Parliament Volume 486: debated on Monday 12 January 2009
The first reference I found to Pernicious Anaemia was this question, asking the Secretary of State for Health what research has been commissioned into treatment of Pernicious Anaemia.
The answer essentially was no research had been commissioned or was planned.
The position has not changed, despite PAS research with the James Lind Alliance and the calls from the NICE Guideline on B12 deficiency for important research to be carried out.

Pernicious Anaemia – Hansard – UK Parliament Volume 498: debated on Wednesday 4 November 2009
If you can only read one of the links, make it this one.
Madeleine Moon, MP for Bridgend, raises numerous important points in the debate. Expressing her gratitude to the Pernicious Anaemia Society, based in her constituency, she sets forth all the stuff those of us campaigning for change and improvement talk about every day.
In 2008, PAS calculated that £20 million a year could be saved in nursing time by allowing patients to self-inject. If that estimate was taken 16 years later, the NHS could have saved 320 million by moving towards self-injection for those who can and are willing.
In response to the PAS petition via the No 10 e-petition system, the Department of Health acknowledged:

“Too often, people with long-term chronic conditions have been made to fit themselves into the way care is provided locally, regardless of whether that meets their individual needs.”

It never ceases to amaze me though in the Hansard reports how MPs can go off track on such an important matter. I’ll leave you to discover the reference to the pig farmer and the cauliflower for example!

In 2009 PAS held a parliamentary reception to raise awareness amongst MPs and the Early day motion referred to in this debate called for a review of the efficacy and cost effectiveness of current treatment for Pernicious Anaemia. The government established the National Institute for Health and Clinical Excellence to provide authoritative, independent advice to the NHS on different health-related interventions and forms of care. That is to increase fairness in access to treatments, to be a national source of robust clinical guidance and to speed up the uptake of cost-effective treatments in the NHS.

Despite all the words of support in the debate about the need for reviews, guidelines, education and research, the government did nothing; PAS had to lobby and get NICE to commission the Guideline.

Since this question raised in 2014 there has been new Iron deficiency Guideline (August 2024) and the first Guideline on B12 deficiency from NICE (March 2024). Complaints abound from sufferers of both B12 deficiency and iron deficiency anaemia that the Guidelines are largely ignored.

Jane Ellison, the MP who answered this question, said that “actively supporting patients with such conditions through better self-management, disease-management or case-management, or lifestyle interventions prevents acute exacerbations and reduces the need for emergency hospital admission”.
She doesn’t say who is to give this active support. Clearly from our growing membership, there has been very little active support from the government and NHS since 2014 for any disease and case management for people with Pernicious Anaemia.

Written questions and answers – Written questions, answers and statements – UK Parliament UIN 224293, tabled on 11 February 2015
Virenda Sharma, a Labour MP, asked for an assessment of the implications for policies of the findings by the Pernicious Anaemia Society members’ survey, published in the British Journal of Nursing in April 2014, that over 60% of people with Pernicious Anaemia are unhappy with their treatment and that many such people have had to resort to self-medicate.

Norman Lamb Liberal Democrat didn’t answer the question. Essentially, he said any patient with Pernicious Anaemia who has concerns about their treatment should discuss this matter with their general practitioner.
Norman Lamb went on to chair the Science and Technology Committee. He stepped down in 2019 following a stroke and was appointed chair of South London and Maudsley NHS Foundation Trust in December 2019.
Norman Lamb says he has been given second chance after stroke scare | Eastern Daily Press
From this press article it sounds like he had positive and constructive discussions with his medical team. Lucky, he didn’t have PA, or his experience might have been quite different!

Jane Ellison Conservative gave her answer, and this triggering sentence jumps out of the page:
“Whilst some patients with Pernicious Anaemia might prefer to have more frequent injections, or for other forms of vitamin B12 to be self-administered, these are matters for individual patients to discuss with their general practitioners (GPs). It is for clinicians, not the Department, to specify regimes of clinical care.”

I, and no other patient with PA I have ever met would “prefer” to have more frequent injections. What every patient with PA would like (and deserves) is a quality of life that allows them to stay awake at work, not have peripheral neuropathy, not have brain fog, anxiety or any of the countless other symptoms that plague people who are unable to absorb B12 due to lack of intrinsic factor.

Seriously? “Prefer”? Do Type 2 diabetics prefer to have enough insulin or are they more entitled to stay healthy and have a quality of life than someone with Pernicious Anaemia?

Jane then went on to say the Department has made no specific assessment of the benefits of allowing easier access to vitamin B12. Any patients with Pernicious Anaemia who have concerns about their treatment should discuss this matter with their GP.

Well ten years later there still has not been an assessment, access to vitamin B12 through prescription is even harder than it was in 2015 and patients with PA (except for a lucky few with a positive GP experience) can hardly get an appointment with their GP let alone have a constructive conversation without being gaslit or threatened for asking questions or quoting NICE.

Written questions and answers – Written questions, answers and statements – UK Parliament UIN 16903, tabled on 18 November 2015
Written questions and answers – Written questions, answers and statements – UK Parliament UIN 16902, tabled on 18 November 2015
Lawrence Robertson asked the first question on this day then poses another two questions, one about frequency of injections and one about allowing easier access to Vitamin B12.
Jane Ellison gives the same answer to all three questions. In essence, the Department has done nothing, plans to do nothing, she says most patients do well on 12 weekly injections (based on no research or facts whatsoever).

The Pernicious Anaemia Society, together with the James Lind Alliance, revealed that one of the top priorities for research is a better understanding of why some people with Pernicious Anaemia need more frequent injections than others. This is not a preference. This is based on the return of and resolution of symptoms. Why are patients still held hostage to their autoimmune condition when a cheap and effective B12 replacement therapy of hydroxocobalamin is available?

Jane Ellison is no longer an MP. She was appointed a Non Executive Director of NHS England in February 2024! Let’s hope she is not still talking about patients “preferring” to be well rather than sick!

Written questions and answers – Written questions, answers and statements – UK Parliament UIN 21373, tabled on 6 January 2016
Frank Field, Labour, asked how many children in England were diagnosed as anaemic or iron deficient in each of the last 10 years for which figures are available.

Jane Ellison, Conservative MP, answered again and said no figures are available centrally for how many children have been diagnosed as anaemic or iron deficient in the last 10 years.

The National Diet and Nutrition Survey (NDNS) UK report for 2015 had figures for the proportion of children in the United Kingdom with haemoglobin concentrations below a certain level that indicate anaemia but are not necessarily diagnosed.

Although it wasn’t asked, there were not and still are not any figures regarding the prevalence of B12 deficiency in children.

The latest published data from NDNS does not provide comparable data to that available in 2016 but data from 2019 showed that around 54% of girls aged 11 to 18 years had low iron intakes with about 9% (compared to 7% in 2015) in that age group having iron deficiency anaemia.

Written questions and answers – Written questions, answers and statements – UK Parliament UIN 30023, tabled on 7 March 2016
This question was about nutrition and nutritional deficiencies generally.

Jane Ellison, Conservative, gave a long and detailed answer, but the reality is that the data isn’t clear, nor is it regularly updated and nor does it, for PAS at least, help identify accurate numbers of people with Pernicious Anaemia or a B12 deficiency. Data in this area is becoming increasingly difficult as patients must find their own solutions to get adequate treatment, making it more difficult to know the depth of the problem.

Jane refers to the nutritional advice which was available through the One You campaign, Change4Life, Healthy Start scheme, Eatwell plate and NHS Choices website. In addition, she said everyone between the ages of 40 and 74 can have a free NHS Health Check to identify the warning signs of poor nutrition. She referred to the funding to Age UK to the tune half a million pounds to reduce malnutrition among older people, and ensure all health staff are trained to identify the early warning signs so that effective action plans can be put into place.

Hmm, this age group is the key target for GPs arbitrarily stopping their B12 injections contrary to the advice in the NICE Guideline. Let’s not get started on the conveniently removing or losing their PA diagnosis (yes, controversial, but I know it happens from firsthand experience) and the (I believe) cost-driven change to oral supplementation despite evidence to the contrary for those with PA.

The prevalence rate of diagnosed dementia in people aged 65 and older in the UK was 4.2% of the primary care registered population in 2024 (2021 3.9%). The absolute number of people living with dementia in the UK is projected to increase significantly in the coming years due to the aging population. B12 deficiency plays an important role in cognitive impairment and symptoms can mimic dementia. Where is the research and funding to investigate this further?

Written questions and answers – Written questions, answers and statements – UK Parliament UIN 56179, tabled on 5 December 2016
This question asked what steps are being taken to improve education for health professionals on screening, diagnosis and effective individual treatment for vitamin B12 deficiency, and whether the Department has plans to include serum B12 in full blood count screening.

The response is complete obfuscation and waffle, so I suggest you prepare yourself before reading it. This guidance mentioned in the answer dates from 2014 (and has been replaced by the NICE B12 Deficiency Guideline 2024)

What is interesting here though is the explanation that a full blood count is not intended as a diagnosis tool for specific health conditions. I quote Nicola Blackwood MP”: “The test assesses a number of different components in the blood, including red blood cell count, haemoglobin levels and platelet levels and is designed to help a clinician assess the overall health of the patient as part of the overall clinical picture. However, the test often gives important clues to specific conditions, and this can help doctors to reach a diagnosis, alongside any other tests or investigations the doctor thinks necessary”. Remember this paragraph or point to it when your GP confidently decides to hoodwink you into believing you are well, based on your serum results, despite your PA diagnosis and ongoing symptoms.

As many with Pernicious Anaemia will attest, since 2016 GPs more and more rely on blood serum test results for B12, ignoring the low sensitivity of the test and, more concerningly for the patient, ignore the symptoms and risk factors for B12 deficiency due to a lack of knowledge about Pernicious Anaemia in the healthcare profession. There has been a disappointing lack of engagement to improve education in the NHS on B12 deficiency until recently. Perhaps some more about that in a future blog….

Written questions and answers – Written questions, answers and statements – UK Parliament UIN 56168, tabled on 5 December 2016
Here was a specific question about plans for routine screening for vitamin B12 deficiency in pregnancy.

Nicola Blackwood again, with a more concise answer, responded that the UK National Screening Committee (UK NSC) has not reviewed the evidence for screening pregnant women for vitamin B12 deficiency but pointed out they were making a call for new screening proposals.

As of 2025 there is no routine screening of vitamin B12 deficiency in all pregnant women. The reasoning is a “lack of clear benefit”.

The UK NSC requires strong evidence that screening leads to better outcomes for the screened individuals compared to usual care. For iron deficiency anaemia in pregnancy (a related issue), they have stated that “it is not clear if pregnant women with mild to moderate IDA will benefit from treatment” and there’s a “lack of evidence on benefits and harms associated with screening.” Similar reasoning might apply to B12 deficiency in the absence of strong evidence of benefit from routine screening.  

The UK NSC then went on to say that screening can have potential harms, such as false positives leading to unnecessary anxiety and interventions. There is some irony here about the mention of false positives (they mean people showing as B12 deficient when they are not) when science knows that the B12 blood serum test is unreliable and research warns about the potential neurological damage impact on both mother and baby as well as the known effects of the use of nitrous oxide often used in labour.

A Changing Landscape for B12 Testing – Pernicious Anaemia Society
The application and interpretation of laboratory biomarkers for the evaluation of vitamin B12 status – Dominic J Harrington, Emma Stevenson, Agata Sobczyńska-Malefora, 2025
According to the UK NSC, while B12 deficiency can have serious consequences, it might not be prevalent enough in the general pregnant population to warrant universal screening. For people born in 2025, the projected average age for pregnancy is 36 (currently 30.9 years).

The UK NSC’s recommendations are not static. They currently state that they offer routine screening for anaemia. They mean iron deficiency anaemia. Megaloblastic anaemia should also be picked up during this screening but not B12 deficiency. Pregnant women are recommended folic acid supplementation. Resolving a folic acid macrocytic anaemia with supplementation can mask a B12 deficiency which may cause neurological damage in mother and baby.

Further research is needed in this area. In the meantime, pregnant women with PA are wrongly taken off B12 injections and those with risk factors are refused testing in line with NICE Guideline because primary care does not have easy access to the relevant test.

Written questions and answers – Written questions, answers and statements – UK Parliament UIN 57135, tabled on 12 December 2016
A question about the causes of regional variation in rates of iron deficiency and anaemia was answered by saying that no data was available.
As we all know there is even less public data available for B12 deficiency.

Written questions and answers – Written questions, answers and statements – UK Parliament UIN 121060, tabled on 21 December 2017
Another question about iron deficiency and in particular what steps are being taken to prevent iron deficiency anaemia particularly among children and older people. Although this concerns iron, I include it because the answer and the current position is relevant also to B12 deficiency. Iron deficiency sometimes goes hand in hand with B12 deficiency for those with Pernicious Anaemia and vegan diets have virtually no natural sources of vitamin B12.

Steve Brine, Conservative, answered quoting the Public Health England’s Eatwell Guide, designed to ensure dietary recommendations are met. The Eatwell Guide was distributed to health professionals when it was launched through the British Medical Journal, Dietetics Today and targeted articles.

However, since 2017, the number of hospital admissions for vitamin deficiencies has increased. ‘Troubling’ rise in people admitted to hospital due to lack of vitamins | The Standard
According to the NHS 57, 000 emergency admissions to UK hospitals each year are due to iron deficiency anaemia. Speaking personally as one of those 57000 statistics, this is totally unacceptable for a preventable, treatable, easily testable condition.

The RCNI (Royal College of Nursing Institute) in January 2025 stated that in the UK, it is estimated that 8% of women and 3% of men have iron deficiency anaemia. Medichecks, in their 2024 health trends analysis, noted that iron deficiency remains a persistent issue, particularly for young women, with over 18.6% of women aged 18-30 having abnormal ferritin levels (a marker of iron stores).

Dietary trends, such as increasing popularity of vegetarian and vegan diets (if not managed with careful attention to iron and B12 intake and absorption), could potentially influence nutrition deficiency rates.
In 2018 estimated numbers of vegans in the UK was around 550,000. By 2024, estimates vary, but some suggest around 2.5 million vegans in the UK, representing about 4.7% of the population.

Written questions and answers – Written questions, answers and statements – UK Parliament UIN 153897, tabled on 14 June 2018
Royston Smith, Conservative, asked what information the Department of Health holds on the proportion of people who are deficient in essential vitamins and minerals. Steve Brine, Conservative, responded by referring to the National Diet and Nutrition Survey.

Latest NDNS data (2014/15-2015/16) shows that mean vitamin D intakes were a fifth to a third of the recommended amount in all age groups, and low blood vitamin D levels were seen in 26% of older children (11-18 years) and 17% of adults (19-64 years).

Low blood folate levels, indicating risk of anaemia, were found in 28% of older girls, 15% of older boys and 7% of adults.

54% of older girls and 27% of adult women had low iron intakes, and iron deficiency based on blood samples was found in 9% of older girls and 5% of adult women.

There was also evidence of low intakes of vitamin A, riboflavin, zinc, magnesium, potassium and selenium in some age groups.

Results of the NDNS are available to view at the following link:
https://www.gov.uk/government/collections/national-diet-and-nutrition-survey

Written questions and answers – Written questions, answers and statements – UK Parliament UIN 290610, tabled on 25 September 2019
Dr David Drew, Labour, asking the Secretary of State for Health and Social Care about when he plans to announce the proposed NICE Guideline for Pernicious Anaemia and Autoimmune Metaplastic Atrophic Gastritis. The answer was to confirm that NICE had been asked to develop a guideline on Pernicious Anaemia but work hadn’t yet started. He indicated that NICE has not produced any guidelines on the diagnosis and treatment of autoimmune metaplastic atrophic gastritis, and has no current plans to do so.

Lo and behold during the process, the NICE Guideline committee changed the remit and title, despite stakeholder objection, to B12 deficiency in over 16s and lumped Pernicious Anaemia in with atrophic gastritis, erroneously in our view.

Written questions and answers – Written questions, answers and statements – UK Parliament – UIN 30728, tabled on 17 March 2020
Written questions and answers – Written questions, answers and statements – UK Parliament UIN 118598, tabled on 20 November 2020
These two questions are about the progress on the delivery of the NICE Guideline and were answered by Jo Churchill.

Look out for Jo’s name as she answered a few relevant questions over her time as an MP. She is no longer an MP having lost her seat in 2024.

We all know how the process of the NICE Guideline ended! The Guideline was published in March 2024, sadly lacking in a lot of areas, calling for more research and made some recommendations about testing that GPs don’t have access or budget for. Even the good parts in the Guideline are being ignored and deliberately misinterpreted by many primary care health care professionals.

Written questions and answers – Written questions, answers and statements – UK Parliament UIN 133092, tabled on 30 December 2020
Liz Saville Roberts, Plaid Cymru: A question about removing the classification of Prescription Only Medicine from injectable vitamin B12 and making it available in pharmacies answered by Jo Churchill, Conservative.

Essentially her answer was that vitamin B12 is a Prescription Only Medicine in the UK because it needs suitable training to be given for its administration. She pointed out that patients who need it need medical input and monitoring. The upshot of the answer was confirmation that the government is doing nothing.

Many of our members are increasingly frustrated that a vitamin administered by injection is so much harder to get than in tablet form and those with a malabsorption issue don’t understand why they are held hostage to a GP prescription. The MHRA and Medicines Act, however, is clear that in the UK all injectable medication is prescription only.

Written questions and answers – Written questions, answers and statements – UK Parliament UIN 163284, tabled on 4 March 2021
Alex Norris, Labour, asked the Secretary of State for Health and Social Care, what progress the National Institute for Health and Care Excellence has made on the creation of a Guideline for the diagnosis and maintenance of Pernicious Anaemia.

Jo Churchill responded that NICE expects to publish its final guidance in March 2023.
It was published a year later in March 2024. See my comment above!

Injectable Vitamin B12 – Hansard – UK Parliament Volume 696: debated on Wednesday 26 May 2021
Jane Hunt introduced a proposal to remove classification of prescription-only medicine from injectable vitamin B12.

It is interesting to read this debate in full because it gives some clarity to what the fundamental issues are.
It is also worth taking a look at this from MHRA Further_response_FOI_23-724_Clarification.pdf
The government position was that B12 can’t be available for sale in pharmacies because it is an injection and the condition it is licensed to treat (B12 deficiency) requires a clinician to diagnose it.

But…

Affording those with B12 deficiency because of a medical condition like autoimmune Pernicious Anaemia the same dignity and control over their own health as a diabetic using insulin, and reducing the workload and financial burden on GP practices, District Nurses and other NHS services surely isn’t too much to ask.—[Official Report, 23 September 2020; Vol. 680, c. 1077.]

Steel yourself if you click the link to read the whole debate which is annoyingly diverted by (the annoying) Nadine Dorries who gets the wrong end of the stick, goes off at a tangent about women and men and admits to talking (for quite some time) without any knowledge on the subject.

There is then further distraction and pettiness about the wrong use of You instead of My Honourable Friend (seriously, are we still so archaic that this is more important than the subject under debate?).
In the debate Nadine Dorries incorrectly uses the terms Prescription, Pharmacy/Over the Counter and General Sales but ultimately the point is that in order for the MHRA to move a medicine from one category to another it must be shown that the medicine does not present a direct or indirect danger to human health, even when used incorrectly, if used without the supervision of a doctor, or is not frequently and to a very wide extent used incorrectly, and as a result is not likely to present a direct or indirect danger to human health.

The main reason for the reluctance to change is because the “medicine” is authorised for injection and in the UK, the license is for intramuscular (IM) injection only. The chain of events must start with a change by the manufacturers and the MHRA allowing and encourage self-injection either through IM or sub-cutaneous (SC) delivery with appropriate research. This paves the way for more constructive discussion about the next steps of improved access.

Written questions and answers – Written questions, answers and statements – UK Parliament
UIN HL2820, tabled on 11 November 2014
The relevant first question I could find in the House of Lords was about iron deficiency anaemia. Baroness Masham of Ilton asked what action the government is taking to reduce the number of patients admitted to hospital with iron deficiency anaemia. You will recall this is the same as the question asked in the Commons.

Earl Howe’s answer was different but sidesteps the actual question as the government is doing nothing directly to reduce the number. He said “Iron deficiency anaemia can be caused by a number of different underlying conditions, and it is for health professionals to advise on the appropriate treatment for individual patients. The majority of people should be able to get all the iron their body requires by eating a varied and balanced diet.”

Written questions and answers – Written questions, answers and statements – UK Parliament UIN HL1033, tabled on 1 July 2015
Written questions and answers – Written questions, answers and statements – UK Parliament IN HL1036, tabled on 1 July 2015
Written questions and answers – Written questions, answers and statements – UK Parliament UIN HL1034, tabled on 1 July 2015
Written questions and answers – Written questions, answers and statements – UK Parliament UIN HL1032, tabled on 1 July 2015
The Countess of Mar asked whether the government plan to review how Pernicious Anaemia and other symptoms of vitamin B12 deficiency in the United Kingdom population are diagnosed and treated, particularly taking into account the neurological and mental health impact of any failure to diagnose quickly and accurately; and, if not, why not.

She then asked whether there is an assessment of the social and economic costs of misdiagnosis and late diagnosis of Pernicious Anaemia and other causes of B12 deficiency.

Lord Prior of Brampton seems to have used the same answer as Jane Ellison as the text is word for word the same and talks about patients preferring more frequent injections.
My irritation about the word “prefer” remains so best I move on quickly.

Ultimately his answer is that the Department does not have any information regarding patients purchasing additional supplies of B12 from unregulated sources; he talks about fortification of flour with folic acid and confirms that the Department has made no assessment of the social and economic costs of misdiagnosis or late diagnosis of Pernicious Anaemia and other vitamin B12 deficiencies.

The Countess of Mar then asked about what steps are being taken to ensure that a reliable test to assess the vitamin B12 status of the United Kingdom population is made available as a means to prevent serious and irreversible neurological damage before any mandatory fortification of flour with folic acid is introduced. And Lord Brampton repeats his previous answer with some additional reference to the fortification of flour reasoning, with no reference to the effect of folate fortification on B12 deficiency testing at all.

For her 4th question Countess of Mar asked what steps are being taken to find an alternative and reliable test to assess the vitamin B12 status of the population; and what level of false high results the current test provides.
There is no answer to this point in Lord Prior of Brampton’s wordy response. As we all know, ten years later we are still all relying on the same low sensitivity B12 serum test and there is limited availability to other tests as recommended in the 2024 NICE Guideline, which are also not a good and reliable indicator of B12 deficiency without considering symptoms and risk factors.

Written questions and answers – Written questions, answers and statements – UK Parliament UIN HL1540, tabled on 16 July 2015
Written questions and answers – Written questions, answers and statements – UK Parliament UIN HL1539, tabled on 16 July 2015

The Countess of Mar asked how the government propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when Pernicious Anaemia is misdiagnosed.

Lord Prior of Brampton said it is important that patients suffering from Pernicious Anaemia, the result of a vitamin B12 (cobalamin) deficiency, receive a prompt and appropriate diagnosis. Yay! But wait a minute! Here Lord Prior is using “Pernicious Anaemia” as the result of B12 deficiency. This is a fundamental flaw in his understanding and not what the question was about.

The result of an untreated B12 deficiency is ultimately megaloblastic anaemia and death. In the UK, Pernicious Anaemia is the name given to the autoimmune condition caused by a lack of or damage to Intrinsic Factor. We can debate changing it but for now that is what it is called.

He then waffles on about BSH Guidelines and other clinical knowledge websites but never actually addresses the question of alerting or educating medical professionals about autoimmune Pernicious Anaemia.
Perhaps he thought the medics would just hopefully stumble upon this information.

Countess of Mar didn’t give up though, and then asked what action the government is taking to address the problems associated with the late diagnosis of Pernicious Anaemia, in the light of the results of the survey published in the British Nursing Journal in April 2014. (Martyn Hooper et al, courtesy of the Pernicious Anaemia Society)

Lord Prior of Brampton’s response is word for word the same as the previous question, completely missing the point.

Written questions and answers – Written questions, answers and statements – UK Parliament UIN HL7288, tabled on 22 March 2016
Written questions and answers – Written questions, answers and statements – UK Parliament UIN HL7286, tabled on 22 March 2016
Written questions and answers – Written questions, answers and statements – UK Parliament UIN HL7287, tabled on 22 March 2016
Baroness Masham of Ilton asked what action the government are taking following the British Society of Gastroenterology’s observation that the management of iron deficiency anaemia is “often suboptimal, with most patients being incompletely investigated or not investigated at all”. She also tabled a question about what steps they are taking to increase diagnosis and treatment rates of iron deficiency anaemia and what plans they have to introduce a Clinical Commissioning Group Outcome Indicator to address the growing number of hospital admissions attributable to iron deficiency anaemia.

Again, the focus is on iron deficiency but could just as easily have been on B12 deficiency. Tasked with answering the question is David Gifford Leathes Prior, Baron Prior of Brampton, the former chairman of NHS England and Chairman of University College Hospital. He served as a conservative MP until 2001 when he lost his seat to Norman Lamb (remember him from a previous question!).  

Lord Prior’s answers were disappointing and reflect his background in management in healthcare roles in the NHS without any understanding of the patient point of view or clinical practice.

Congratulations if you made it this far and retained your will to live! Let’s keep asking questions.