This month’s blog post is written by Dr Heidi Seage. Principal Lecturer in Health Psychology and Programme director MSc in Health Psychology at Cardiff School of Sport and Health Sciences, Heidi has been a long-time supporter and valuable contributor to research which has made a significant impact on the work of the Society and on the contents of the NICE Guideline on B12 deficiency in Over 16s. In her blog Heidi discusses how her own diagnosis inspired her career choice and talks about the importance of hope and positivity when dealing with the psychological impact of the current state of play in diagnosis and treatment of Pernicious Anaemia
Hope and Psychology in Wellness – Pernicious Anaemia
I am writing this blog as a Health Psychologist but also an individual who has been living with the impact of Pernicious Anaemia since my teens. My experiences of navigating the challenging diagnostic journey that is too often associated with Pernicious Anaemia is in part what has drawn me to working within Health Psychology. Health Psychology is an area of psychological practice that aims to understand the psychological and emotional aspect of health and illness. My professional role has enabled me to advocate for individuals living with Pernicious Anaemia by using qualitive research methods to share patients’ experiences of treatment and diagnosis. Providing a platform for underheard voices is important as it is the sharing of patient’s stories that can help healthcare professionals to gain a better understanding of the psychological and social impact of living with Pernicious Anaemia.
When I have interviewed people with Pernicious Anaemia for research studies, it is clear that many with the condition feel like the lifelong impact of Pernicious Anaemia is not taken seriously. They reflect time and time again that the day-to-day reality of living with the condition is not understood by healthcare professionals or the general public including their family and friends. For example, when discussing experiences of receiving treatment for PA, patients report that during healthcare check-ups, their ongoing symptoms are dismissed or minimised or even more worryingly not followed up at all. Covid-19 lockdown was a period where many patients with PA experienced temporary or permanent suspension of their treatment (Seage & Semedo, 2021). Such experiences can have a detrimental effect on mental health and can cause people to become reluctant to discuss their condition with others. It is likely that the negative healthcare experiences documented in PA maybe further compounded by a gender gap in healthcare. For example, in the UK women are more likely to receive poorer healthcare compared to men and have an increased likelihood of misdiagnosis and treatment.
In recent months NICE have published the new guidelines on B12 deficiency. One of the key outcomes patients and patient advocacy groups were hoping for from the publication of the NICE Guideline on B12 Deficiency was that this publication would give hope that treatment from primary care providers would improve. We know from psychological research that hope (i.e. the expectation that one will have a positive experience or outcome) is a crucial factor in well-being. For example, research has shown that people who are hopeful are:
- more likely to adopt healthy lifestyle habits.
- have greater resilience in face of adversity (this is the ability to recover quickly from difficulties)
- show an improved ability to cope and adapt to chronic illness.
- have positive social interactions and receive support from others.
The underlying message in the NICE Guideline of moving to towards a model of person-centred care should be seen as a positive change. A person-centred approach to managing PA can enable the healthcare system to tailor treatment to an individual’s symptoms rather than a standard one size fits all approach. As a patient, the publication of these guidelines has left me feeling more positive about the possibility of constructive conversations with my healthcare provider in future appointments. However, it is important to recognise that hope is different from blind optimism. As a community of people with Pernicious Anaemia we know that there is still a long way to go to change the way B12 deficiency and Pernicious Anaemia is diagnosed and treated.
For such changes to come into fruition there needs to be further research into the symptoms of Pernicious Anaemia and how they respond to treatment. There is still limited recognition of the complexity of Pernicious Anaemia symptoms and how these can impact on psychological wellbeing and daily functioning. Our recent review documented the symptoms reported in medical notes of adults prior to diagnosis with Pernicious Anaemia (Seage, Bennet, Ward, Semedo, Plattel, Suijker, Vis & James, 2024). Ninety-nine different symptoms were associated with the condition; fatigue, loss of sensation in limbs, excessive weight loss and sore tongue were the most common This highlights that Pernicious Anaemia is very variable in its presentation and is likely to impact individuals in different ways. Alongside colleagues at the B12 Institute in the Netherlands (Suijker, Plattel, Seage, Ward, James & Vis, 2024) we have been developing a tool to help patient monitor symptoms related to B12 deficiency. We intend to validate this tool for use with people with PA so that in the future, it can be used within the healthcare context to support patients when discussing their symptoms and treatment needs.
Ongoing research developments alongside the recent publication of NICE guidelines for the treatment of B12 Deficiency such as these mentioned, leaves me feeling hopeful that there will be improved management of the condition in the near future. Patient advocacy groups such as PAS can use research to advocate for policy changes and better services as well as promote and share helpful information to the patient community. Research findings can help strengthen educational material and develop programs to help both patients and health care professionals recognise symptoms and improve communication about the ongoing impact of the disease. Although research is important and can help improve awareness of Pernicious Anaemia and its impact, significant changes are also needed within the healthcare system. Changes that enable shared decision making between healthcare professional and patient will ensure that individuals with Pernicious Anaemia are better supported to make treatment decisions that are right for them.
The Pernicious Anaemia Society is instrumental in raising awareness about the need for specific research and supporting organisations that conduct specialised research including in areas like health psychology. Membership and support of this organisation for people with this condition and donations from their families and friends helps us develop new research to bring about change.
Heidi Seage
If the true range, frequency and severity of B12 deficiency symptoms were to be believed and understood by those in primary care particularly, the treatment regime would surely be altered to one able to best control an individual’s specific symptoms. Even if that meant teaching a patient how to self inject.
This would be my hope.
Patients might then be able to continue to work, maintain good relationships with partners, friends and family, drive or ride a bike, plan for and book outings. The ordinary stuff of life.
So much, much more than tiredness to deal with !
Guys & St Thomas introduced supplying ”the kit” for patients to self inject if they had been usibg nitrous oxide recreationally. Why can’t GP surgeries gather/organise groups in 10/12 patients at a time & teach then to self inject. As patients ”age” unless they have the ability to self inject their health will deteriorate ”more so” that if they could look after themselves.
Absolutely right…we had to “fight” to get EOD injections but seems to have won that battle with our GP for my wife.
Hi Cheryl, When Covid arrived on our shores I approached my surgery via a letter to the practice manager, requesting to be taught how to self-inject. I pointed out how it would be safer for staff and myself if I did not need to attend the surgery plus how it would be more cost effective due to me not taking up nursing staff’s time. My request was accepted and I was taught to self-inject, given syringes and needles along with some B12 vials. At the time my B12 surgery regime was once every fortnight, however since learning to self-inject I now have a 5 day regime, buying the extra B12 vials from Europe. When on the fortnight regime I knew I needed more B12 but the surgery would not accept my request for increasing my injections. Finding my own level for B12 has made a huge difference to my health and welfare, I now live a more fulfilled life. I suggest you consider writing to your surgery to request training for self-injection and if necessary source your own B12 supplies. Good luck on your B12 journey.
Thanks Andy.
Finding my own level for B12 has enabled me to reverse deterioration and make gradual improvements. My GP supported my decision to self inject EOD and suggested that I ask a nurse for injection advice. I asked several – they all recoiled in horror !
Well that was 7 years ago now. After 2 years, I felt able to reduce my intake to an injection every 3rd or 4th day. 5th is pushing my luck.
My technique has thankfully improved over time.