This month’s blog post is a contribution from Dr Nicola Ward, Associate Professor in Pharmacy at Leicester School of Pharmacy, De Montfort University. Nicola is a long-time ally of the Pernicious Anaemia Society having been a former trustee and most importantly a regular leader and contributor on research projects relating to vitamin B12 deficiency and Pernicious Anaemia. Nicola is a member of CluB-12 and a valued contributor to the Pernicious Anaemia research sub-group within that organisation. Nicola’s publication in The Pharmaceutical Journal, co-authored by the founder of the Pernicious Anaemia Society – Pernicious anaemia: recognition, diagnosis and management – The Pharmaceutical Journal can be read here and her contribution to the first International Conference on B12 Deficiency-The Bookends of Life has recently been published here A Systematic Review of Symptoms of Pernicious Anemia – Catherine Heidi Seage, Alexis Bennett, Nicola Ward, Lenira Semedo, Clara H. M. Plattel, Kim I. M. Suijker, Jolande Y. Vis, Delyth H. James, 2024 (sagepub.com).
This blog post is a fascinating insight into a healthcare professional’s experience both as a patient and educator and builds on hope for the future through increased awareness and better understanding and compassion.
Firstly, you may be wondering why a pharmacist is so interested in Pernicious Anaemia! To be honest, Pernicious Anaemia and vitamin B12 deficiency have only been on my radar for the last 10 years when my own health started deteriorating and, you’ve guessed it – I was diagnosed with a vitamin B12 deficiency, probably due to Pernicious Anaemia.
My own personal experiences of seeking a diagnosis, feeling dismissed and unseen despite being an experienced healthcare professional myself have informed the way I teach our students to interact with their patients, to show them compassion and respect and, most importantly, to listen to them.
The evolving role of the pharmacist
You may be most familiar with the image of the pharmacist belonging behind the counter in a high street or local pharmacy. They would be the person who checked your prescription, handed it out to you and maybe gave you some advice about a minor ailment you were struggling with. Over the last 10 years this role has expanded so that pharmacies are providing many other NHS and private services and working more closely with other healthcare providers, particularly GP surgeries. Pharmacists have been able to supply and administer vaccines and other prescription medicines through Patient Group Directions (PGDs) for a number of years now, which are a form of legislation that enables healthcare professionals to supply and administer medication to patients that meet set criteria.
Many GP surgeries now also employ pharmacists, so you may find you have an appointment with them for a medicines review or to discuss the management of an ongoing condition.
Earlier in 2024 a new national scheme called Pharmacy First NHS England » Pharmacy First was launched, which enables pharmacists to assess, diagnose and treat 7 common conditions including sinusitis, sore throat and acute ear infections following defined clinical pathways. The aim of this service is to free up GP appointments for patients that need them most and enables people to access care promptly and conveniently.
Training
What many people don’t know is that pharmacists have to complete 5 years of training before they can work as a pharmacist. This then begins a life-long ongoing educational journey, with a constant need to keep updated and undertake more specialist training if needed for the role. Students don’t just learn about the medicines themselves, but have to gain an understanding of a broad range of major and minor illnesses and how to recognise warning signs, also known as “red flag” symptoms which would necessitate referral to other healthcare practitioners. Students are also now taught diagnostic, assessment and prescribing skills so that they will be able to prescribe upon registration (which will be the case from 2026).
A common comment I hear from people with Pernicious Anaemia is a feeling of frustration or even anger that their healthcare professionals know so little about Pernicious Anaemia and the impact of being deficient in Vitamin B12. I can empathise with this, and experienced this first-hand- but also acknowledge as a current educator, that there are limitations in what can be covered in an undergraduate degree. I know in our own MPharm programme, students are taught about vitamin B12 deficiency and Pernicious Anaemia in their first year and I supervise two final year students each year who undertake their research project in this area; but there will clearly be some differences between individual universities in the depth of this teaching.
Compassion- the missing piece?
Personally, I believe that even if our healthcare professionals of the future can’t be taught everything they need to know about Pernicious Anaemia, they should be taught to demonstrate compassion and empathy to all of their patients; and to acknowledge when they don’t have all of the answers. Compassion is being increasingly recognised as pivotal for effective healthcare services to be provided.
When patients were asked what compassion looks like to them, a study reported descriptions including1:
- Listening and paying attention
- Following-up and running tests
- Continuity and holistic care
- Respecting preferences
- Genuine understanding
- Body language and empathy
- Counselling and advocacy
I’m sure everyone would agree that many of these descriptions would also be what we would hope for in our own interactions with healthcare professionals. A new field of research named “Compassionomics” has been established to evaluate the scientific evidence that compassion can improve patient outcomes, healthcare quality and safety and the wellbeing of the healthcare providers themselves2. Researchers have shown that being shown compassion has a positive impact on the symptom burden experienced by patients3 and their perceived Quality of Life4.
Health and social care programmes at universities are increasingly working collaboratively with people with lived experience in teaching their students. This enables students to gain an understanding of a medical condition far beyond that which they could learn from a textbook, lecture or seminar. This might involve patients coming in to speak with students to share their experiences of living with a medical condition, assessing student communication skills or collaboratively developing case studies for use in teaching. Universities are often looking for volunteers- so this might be something to consider if you have the time.
I am optimistic that there is a shift in the right direction, in acknowledging that shared decisions about treatment are essential. Only the patient themselves understands the impact that living with a condition such as Pernicious Anaemia has – and hopefully our emerging healthcare professionals, including pharmacists, are willing to listen.
References
- Baguley SI, Pavlova A, Consedine NS. More than a feeling? What does compassion in healthcare “look like” to patients? Health Expect 2022; 25(4): 1691-1702
- Trzeciak S, Mazzarelli A. Compassionomics: The revolutionary scientific evidence that caring makes a difference. Publ Studer Group, New York, 2019.
- Sinclair S, McClement S, Raffin-Bouchal S et al. Compassion in healthcare: an empirical model. J Pain Symptom Manag 2016; 51(2): 193-203
- Flocke SA, Miller WL, Crabtree BF. Relationships between physician practice style, patient satisfaction and attributes of primary care. J Fam Pract 2002; 51(10): 835-40
All very well but not helpful. There is still guidance to treat the symptoms not the numbers by NHS on the B12 website. That does not translate into acceptance by doctors who stick to 5 a year without considering the patients needs. It wasn’t a problem when we were in the EU but now that is getting difficult to get around as German pharmacies are reluctant to post to UK. I need to inject at three week intervals. If I don’t life gets very difficult and painful. GP doesn’t give a damn.
Sometimes it’s not even 5 a year.
I was told one every 3 months.
Sometimes I can’t get one for several weeks so might only get 3 some years.
I would love to have Dr Nicola as my pharmacist. The idea of someone who understands the stress of consulting a doctor who does not believe you when to go to them with a set of symptoms that don’t match the “norm”would make my life so much better.
I receive my injections every two months . Why is it so difficult for you?
My gp doesn’t care either, I am lucky if I get an appointment every three months, I am about to change surgeries 2025, just after I have a 3 month b12 as joining a new practice doesn’t guarantee I would get one
I think ???? pharmacists should be empowered in the uk to actually do the shots when a patient has been proven to have pernicious anemia. We shouldn’t have to wait on nurses in the hope we can get an appointment the pharmacist should be given the power to decide how many shots a year a patient needs going on symptoms not bloods, apart from the P.A I also have functional b12 def where the b12 doesent get into the cells so I use a trickle effect of frequent injections on a regular basis in the hope that enough trickles into the cells to keep me alive. I rely on our German friends to keep me stocked up and it’s not cheap and money I can ill afford. If our pharmacist was able to help or even teach us to inject like diabetics have to and supply the b12 then our quality of life would be so much better. Instead of that we live our lives in the shadows scared we upset our gps by admitting we self inject by buying the b12 from Europe and yes sometimes even ashamed at having to be so secretive. How wonderful would it be not to feel like some kind of parasite begging for the meds that keep us alive.