This month’s blog post is written by CEO of the Pernicious Anaemia Society Katrina Burchell based on recent correspondence and with the kind permission of active member Sue Childs. Sue’s recent experience with her MP sheds some light on why it is valuable to take part in this form of democratic engagement and Katrina outlines how and when making well-reasoned approaches to your MP can help make a difference.
We all regularly encounter, especially on social media, people who complain. Often these will end in a threat to “report” someone or write to their MP. Does the option of writing to your MP ever make a difference? Is it worthwhile and what is our recent experience?
Yes, writing to your MP in the UK can and sometimes does make a difference. PAS has evidence of this in the following campaigns which have led to raised awareness and the commissioning of the NICE Guideline:
Nationwide Political Campaign for the guideline on Pernicious Anaemia
PAS Campaign: Meeting with the Welsh Government and what you can do
Parliamentary Reception – We need your help!
In May 2021, Tracey Witty, a long-term and dedicated campaigner for better recognition and treatment of vitamin B12 deficiency in the UK, was able to get her MP Jane Hunt to open a Westminster Hall debate. This campaign, which included a petition with over 96,000 signatures, highlighted the issues and contradictions around prescription B12 injections in the UK being less available for those that have a medical condition than those accessing them for wellness through beauty salons etc. Tracey achieved some significant milestones. She raised awareness among the public and healthcare professionals and within Parliament, especially about the complexities and impact of B12 deficiency. The fact that the issue was debated in Westminster and is now a matter of public record can help keep the pressure on the fight for change.
Writing to your MP is a crucial part of the democratic process and can contribute to influencing political outcomes in various ways. Even if your letter doesn’t lead to a policy shift, it adds to the collective voice of constituents raising a particular issue. MPs and their staff track the volume and nature of correspondence which can signal the level of public concern. A significant number of letters on a specific topic can demonstrate the strength of public feeling which might influence their priorities or how they vote or speak in Parliament. That adage of the squeaky wheel getting the most oil attention springs to mind.
But writing to your MP is not a magic bullet, you need to be clear why you are doing it and what you want to achieve.
Sometimes you will write to get your own personal position changed. Your MP might write to the organisation in question, raising your concerns and requesting an explanation. This might prompt the organisation to review your case. They might also write to any relevant government department or regulatory body. Most MPs probably will be reluctant to engage in depth with the professional opinion of a medical doctor, but they might, for example, be willing to seek understanding on why the NICE Guideline is not being followed in your circumstances. If your individual case and letters from others reveals a pattern of unfairness in your region your MP might be willing to raise the issue in Parliament. However, an MP cannot force an organisation to change their decision and has no control over private or public organisations.
Usually more effective is writing to your MP to highlight a broader issue of public concern. By writing thoughtfully and strategically you increase the chances of your voice being heard. Being persistent can contribute to making a difference even if that difference is incremental. When Sue wrote to her MP she asked for a face-to-face meeting. As her MP was also a practicing GP, she was able to assume that he hopefully had some knowledge of practices and procedures and underlying causes of B12 deficiency. For many MPs this will not be the case.
Whilst this is one solution, it does leave open the questions of health inequality, future research and those who need help with injections or who are not able to self-administer.
It also focusses on the end goal without dealing with the steps in between which need to be changed before we can get to that point.
It is the position of the Pernicious Anaemia Society that:
- People with a medical reason for B12 deficiency such as Pernicious Anaemia or malabsorption for other medical or surgical reasons need to have documented diagnosis and treatment. Without this valuable information in the health records there are potential issues for the patient as an individual and for future research into this condition. This does not mean that the treatment cannot be self-administered. It means that there should be a record if you have an underlying cause as it may impact on other health decisions.
- The MHRA (Medicines and Healthcare products Regulatory Agency which currently states that, in the UK, hydroxocobalamin is for intramuscular injection (IM) only is outdated, out of step with the rest of the world, and not based on any current or qualitative research. The MHRA have confirmed in writing they do not have the reason on file the why the licence is for IM only. The NICE Guideline committee called for research on the effectiveness of sub-cutaneous (SC) versus intramuscular injections for hydroxocobalamin. The James Lind Alliance Priority Setting Partnership asked for better research into safety and efficacy of different methods of delivery for B12 replacement therapy for those with Pernicious Anaemia.
- Better access to injectable B12 in the form of hydroxocobalamin in the UK for self-administration by patients with Pernicious Anaemia or B12 deficiency by reason of malabsorption would result in a win-win situation for both the NHS and the patient. The NHS would save money and time on nurse appointments to administer a non-toxic, safe but necessary B12 replacement therapy by allowing those who are able and willing to self-inject to do so. The NHS would save money by not prescribing B12 injections to those who are able and willing to purchase injectable B12 from pharmacies at a frequency that gives them quality of life. Those for whom for cost or the ability to self-inject (such as the elderly, the young and others that need primary care support) would have better access to appointments and care. By allowing purchase in the UK in pharmacy, the unregulated administration of B12 injections in the beauty industry would also need to be reviewed and the potential safety issues of buying online which have previously been raised by the healthcare profession would also need to be addressed.
There are two things that need to change:
- MHRA needs to change the licensing of hydroxocobalamin IM in the UK to be both IM and SC. It is unrealistic to wait for research into this to be done. The products which are used in the UK by the NHS are the same as those licensed for SC elsewhere. Many patients are already injecting sub-cutaneously with or without their GP’s involvement. Many are injecting SC themselves and receiving IM by their GP and not reporting any negative difference in symptom relief with SC. Some forward-thinking GPs are showing their patients how to inject vitamin B12 without any problems. A conversation with my GP recently reminded me that sending home patients with insulin or anticoagulants such as heparin (both potentially lethal if wrongly administered) seems to cause him less trepidation than the thought of me self-injecting my necessary (because I can’t absorb it from food) non-toxic B12 ampoule. There should be a monitoring programme put in place immediately on change of the licence so that the effectiveness (or otherwise) can be monitored according to method of injection.
- If B12 ampoules are to be available without prescription in a pharmacy, who should have access to these, and do we need to ensure that initial injections are given with medical supervision to avoid the very small risk of anaphylactic shock? Should they only be available to those who have a medical condition or to anyone with any condition which results in a B12 deficiency including a dietary deficiency where oral supplements might be sufficient? The diagnostic tools for PA and for B12 deficiency are flawed. Our primary care system is failing people with B12 deficiency. So how do we, as a responsible society of people, ensure that people who need access to B12 ampoules get it but that we don’t cause problems for those who have some other condition that needs addressing? There needs to be a thorough and sensible review with patient safety and quality of life topmost in mind.
When people ask PAS about writing to the MP, we fully support them. We can help by providing information, but, in our view, only a concerted and dedicated campaign stating the same and consistent message will ultimately result in change. The message to the government should be:
- Diagnosis and treatment of B12 deficiency and autoimmune Pernicious Anaemia is flawed and is seriously impacting on quality of life of patients
- Better qualitative and quantitative research is needed, the government needs to fund this because B12 deficiency impacts on society and the economy and long-term health outcomes including mental health, dementia and heart disease – three of the priorities for the UK healthcare system
- The resource cost to the NHS and the patient experience would be improved by MHRA changing the licence to allow subcutaneous injections and investing in training patients to self-inject either SC or IM according to preference.
- The advantages and disadvantages of removing the prescription only status of hydroxocobalamin ampoules in the United Kingdom from a patient and health care provider perspective needs to be reviewed with stakeholder input.
Remember that you can only write to your own MP, the one in your constituency who is there to represent your views. Their position, seniority and party affiliation as well as their personal interest might affect their ability or willingness to act. Making your points resonate with their policies will help them as they often have limited ability to deviate from voting along party lines.
The current political context and the government priorities can also influence whether an issue gains traction. In the UK the stated aims of the current Labour government emphasise reducing waiting times, addressing workforce shortages and shifting towards more community-based care, with a strong focus on prevention and early diagnosis. Linking these points to our arguments in a letter to your MP will help the MP see the value of raising awareness of this issue.
The current Labour government has pledged to cut NHS waiting times by delivering more appointments – allowing self-injection of routine B12 injections for those prescribed them will free up appointment time, following NICE Guideline and not retesting B12 serum levels while on injections will save money and blood test appointments. Acknowledging patients using private tests or consultations for B12 deficiency and pernicious anaemia could be a way of using spare capacity in the independent sector to get patients treated faster. Better training of GPs on B12 deficiency treatment and symptom resolution would improve patient/GP relationships and free up appointment times for those who need them. Moving treatment of B12 deficiency injections to pharmacy or other community settings might be considered where this benefits the patient and reduces appointment time in primary care.
When writing to your MP, be clear about your expected outcome. What do you want the MP to do with the information you provided?
- Ask parliamentary questions.
- Raise the issue in debates.
- Contact relevant ministers or government departments.
- Support or oppose specific legislation (when the time comes!).
MPs and their staff are often very busy and may not be able to respond in detail to every letter. You might also receive a standard template response that doesn’t fully address your concerns. As Sue did in her correspondence with her MP, you can find new information or articles to use to re-introduce the issue in a further letter, pointing out that the situation and your concern about it remains. Despite an initial frustrating response from her MP and the MHRA to whom he referred her concern, Sue’s persistence has seen a much more encouraging second letter from her MP’s team staff as he followed up by writing directly to Wes Streeting. Well done and thank you Sue!
Even though that follow up letter was passed to a minister and resulted in a less than satisfactory response, it gave PAS much material and some important contact names to add to or lobbying campaign for change.
Work is going on behind the scenes with the Pernicious Anaemia Society and the B12-Alliance working party on parliamentary lobbying with hopefully an approved and co-ordinated campaign in 2026 when we will undoubtedly be calling on many of you then to write to your MP to help raise awareness.
Lobbying for change, particularly within complex systems like healthcare, can often feel like a slow process. However, it’s important to remember that even the most persistent problems can be eroded over time. Like a dripping tap, each individual effort, each letter, each meeting, may seem small on its own. But these consistent actions accumulate, gradually wearing away resistance and eventually carving a path for meaningful progress.
0 Comments