Psychological burden of anaphylaxis and the fight for an EpiPen

Abstract

A university student with a background of atopy presented to her general practitioner (GP) 2 weeks following an episode of throat tightening and dizziness occurring after touching cashew nut to her lip. She took antihistamine medication immediately and went to sleep, fearing for her life. On waking, she felt astounded to be alive. Her symptoms resolved gradually over the following week. She waited 2 weeks for an appointment with her GP, who referred her to allergy clinic. Eight months later, she was still waiting for her clinic appointment, and was left fearing a future fatal reaction, having been provided with no interim treatment. Not all patients who have severe allergic reactions present to the emergency department. Living with the constant fear of anaphylaxis can be overwhelming for patients and their families, and it can negatively impact mental health. Therefore, we advise early allergy counselling and early EpiPen prescription.

Background

Anaphylaxis is a life-threatening, multisystemic widespread organ response to a trigger, causing an airway, breathing and or circulation problem.¹ Every year, 20 people die from anaphylaxis in the UK alone.¹ The number of hospital admissions related to anaphylaxis increased by 600% from 1992 to 2012.² However, not all patients with anaphylaxis present to hospital.¹ Anaphylaxis can have a vast psychological impact on patients: patients report constant fear and poor mental health.³ Young people may be at a greater risk of anaphylaxis, especially when they leave home such as for work or university.⁴ This may be due to: risk-taking behaviour; pressures of conformity; lack of recollection of severe reactions; and reduced parental supervision.⁴ Parents are often more anxious than their children due to vivid memories of their children’s allergic reactions.⁴ Therefore, regular allergy counselling and early EpiPen prescription are vital for: patient safety; promoting health responsibility; encouraging a sense of health empowerment; and reducing allergy-associated anxieties and poor mental health. Any patient seen by a healthcare provider who has had a possible anaphylactic reaction should be trained in and given a prescription for an epinephrine autoinjector until seen by an allergist.⁵

Case presentation

A university student with a background of atopy, including allergy to all nuts since childhood (resulting in mouth tingling, vomiting, lip swelling and an abnormal sensation of internal shivers spreading through her whole body); raw egg allergy (resulting in lip swelling and urticaria); and eczema and allergic rhinitis, presented to her general practitioner (GP) 2 weeks following an episode of throat tightening, chest pain and dizziness, which occurred immediately after she touched a piece of cake unknowingly containing cashew nuts to her lip. She took four tablets of over-the-counter cetirizine 10 mg followed by two tablets of fexofenadine 120 mg (which she had previously been prescribed for rhinitis), and then she went to sleep. Symptoms persisted for the following week with continued throat tightness, chest pain and reduced urination.

Following a 2-week wait, the patient received an appointment with her GP. Her GP referred her to a specialist allergy clinic for further testing. However, 8 months later, she had still not received a clinic appointment. In the meantime, the patient was experiencing severe, recurrent paranoid thoughts about how easy it would be to murder her using nuts: she imagined someone rubbing nuts into her skin and her developing a widespread skin reaction and suffocating to death. After searching online, she contacted the secretary of the allergy team at her local hospital. Two weeks later, she received an appointment due to a cancellation at the allergy clinic. She was asked to avoid antihistamines for 2 weeks before her appointment, but due to her atopy, she felt that she could not breathe through her nose. Therefore, she continued taking her daily fexofenadine.

Investigations

The patient was investigated using both skin prick testing (SPT) and serum IgE testing. A positive SPT result was demonstrated by a weal of at least 3 mm.⁶ Despite continued antihistamine use, the patient’s SPT confirmed allergies to: grass pollen (which produced a 3 mm weal); house dust mite and birch pollen (both of which produced 6 mm weals, as did her histamine control); and peanuts (which produced an 8 mm weal). Whereas, eggs, hazelnut and almond each produced a 2 mm weal. The patient also had serum IgE testing conducted for pistachio and cashew nuts. Her total serum IgE concentration was 667 kU/L (reference range 0–75). She had moderate IgE concentrations to both pistachio (15 kU/L) and cashew nuts (13.8 kU/L).

Outcome and follow-up

Following SPT, the patient saw an immunology consultant, who in view of the patient history, provided allergy counselling and a prescription for two EpiPens. She then underwent training with an allergy specialist nurse on how to self-administer her EpiPen. She was provided with a tester pen to keep with her in order to practise her technique, and to train friends, family and colleagues.

Two years later, the patient had finished university and moved to a different area with a different GP. When she requested a repeat EpiPen prescription from her GP, they informed her that without evidence of a previous prescription, she would not receive an EpiPen.

Discussion

Many patients feel insufficiently supported due to delayed prescriptions, unclear management plans and inadequate consideration of the psychological impact of anaphylaxis.² Following a severe allergy, patients face challenges including: understanding and accepting their diagnosis; taking precautions to prevent future reactions; living with the fear of potential future reactions and feeling different from their peers.² Not all patients who have had a severe reaction may present to the emergency department.¹ Hence, coordinated follow-up and investigation may need to be undertaken by GPs.

Unfortunately, there is a poor evidence base concerning when and to whom EpiPens should be prescribed.¹ Systematic reviews have highlighted that patients are not always aware of how to use their EpiPens.¹ Thus, National Institute for Health and Care Excellence (NICE) advises that all patients with suspected anaphylaxis should have an appointment with an allergy specialist, and they should not only be provided with EpiPens, but also with tester pens until they receive their specialist allergy clinic appointment.⁵ NICE guidelines further advise ongoing training in EpiPen administration for patients, but does not specify the interval between training.⁵ Regular EpiPen training, such as annually, would provide an opportunity to discuss patients’ compliance with always carrying their EpiPens with them; check EpiPen administration technique, and discuss any concerns, including the psychological impact of living with an allergy. Young patients who have had allergies for many years may not remember the severity of their reactions, so they may be less cautious and less prone to carrying their EpiPens with them.³ Whereas parents tend to be more concerned due to the memories of their children’s reactions.³ Therefore, moving away from home, such as for work or university, is a potential risk factor for anaphylaxis.³ Education initiatives on anaphylaxis and allergies for those aged 16–18 years may increase awareness among this age group, while encouraging behaviours that promote health. Encouraging peer training in EpiPen administration may also reduce patient and parental anxiety regarding the risk of future anaphylaxis when young people move away from home.

Patient’s perspective.

It has taken me years to develop the courage to share my story. But my concern regarding the delays that I experienced in obtaining an EpiPen makes me determined that no one else should go through this struggle. I honestly do not feel that most doctors understand the psychological impact of having a serious reaction.

That night of my reaction, I texted my family and friends to tell them that I loved them before falling asleep. It must have seemed very bizarre to receive a heartfelt text in the middle of the night, but I honestly did not know if I would ever see or speak to anyone again. I was imminently fearing for my life. That is not a feeling that you ever forget.

Waiting for an EpiPen was probably the longest wait of my life because I was constantly scared for my life; I had become very paranoid. For some reason, I just could not shake the idea out of my head about how easy it would be to murder me due to my allergy. I just felt so vulnerable. At the time, I felt really stupid for thinking like this. I honestly thought I was crazy, and that I was completely making things up in my head: I had not died so it cannot have been anaphylaxis. I had not been seen in the allergy clinic yet, and I did not have an EpiPen, so obviously the doctors did not think it was serious. One day when I was really scared for no immediate reason, I ended up emailing Allergy UK. They replied on the same day, and gave me the confidence that I needed to fight for my health. It was my mom who actually suggested looking for a secretary’s contact details, and I am so grateful to her for that idea.

My consultant immunologist was shocked that I did not have an EpiPen based on my history, and prescribed me two EpiPens. Till I saw him, I was in denial: the consultant immunologist was explaining that I should not eat any nuts whatsoever due to the risk of cross-sensitivity and it all sounded rather over-the top. I explained that I could eat three peanuts without vomiting and it would take me an hour to get rid of the shivers and tingling sensation throughout my body that I would develop in reaction to eating peanuts. I was trying to build up my resilience! He looked at me incredulously and responded that I could die if I continued to do that. That is when it hit me. Could I? Could I really die? So, I wasn’t just making it all up; I wasn’t being irrational. I was almost at peace that I wasn’t completely crazy, but also upset that I had waited so long for someone to tell me this.

I found the allergy counselling really useful. Although I only had one appointment and no follow-up, because everything was explained so well, this was more than enough for me. I walked away feeling really confident in caring for myself and keeping myself safe. I was provided with information on allergy support services, including Allergy UK and Anaphylaxis Campaign. Allergy UK provides great resources on how to use your EpiPen and what to do in case of a reaction or anaphylaxis for both patients and healthcare professionals. They also have a helpline, and a really prompt email service! Anaphylaxis Campaign is another great resource where you can read other case studies from people from all walks of life. Everyone has some sort of emotional impact following their anaphylaxis.

Unfortunately, that wasn’t the end of my struggle for an EpiPen: 2 years later when my EpiPen expired, I had finished university so I had joined a new general practitioner (GP) practice under a different health board. They were unaware that I had an EpiPen and requested proof of a previous prescription. I was surprised by this as I had expected all of my medical notes to have been transferred across. Luckily, I had kept my hospital consultant letter and emailed it across. However, 2 weeks later, I had heard nothing back. I called the GP to discuss my concerns, and asked for a meeting with the practice manager so that I could explain the importance of EpiPens not just from a safety point of view, but also emotionally for patients. Although the practice manger did not get back to me, one of the GPs phoned to inform me that he had put my EpiPen on repeat prescription and then swiftly ended the conversation. Even though an EpiPen was the outcome that I had wanted, this consultation had not addressed my concerns: I had not been able to ensure that this would not be repeated with any other patients. Yet, no one seemed to care or want to listen.

Learning points.

• There is a need for early EpiPen prescription and training, as well as allergy counselling, to prevent further anaphylaxis episodes and reduce anxiety and fear. Any patient seen by a healthcare provider who has had a possible anaphylactic reaction should be trained in and given a prescription for an epinephrine autoinjector until seen by an allergist.

• We recommend that all general practitioner (GP) practices should have a member of staff present at least weekly who can train and counsel patients on EpiPen use. This will allow prompt training of patients at risk of future anaphylaxis. GP practices should stock practice EpiPens in order to train patients. Patients should also be able to take training pens home with them so that they can practise their technique, as well as train friends, family and colleagues.

• Increased awareness is needed regarding the psychological impact of anaphylaxis. We recommend combined annual EpiPen training with allergy counselling for all patients at risk of anaphylaxis.

• There is a necessity for continued care when patients change general practice or move location, especially taking into account the number of young people who move for university and work.

• Increased education of those aged 16–18 years on anaphylaxis and EpiPen administration may encourage behaviours promoting health and reduce patient and parental anxiety.

Ethics statements

Patient consent for publication

Obtained.