Consider why this information may be so important to the patient. What different emotions may they feel upon diagnosis and in the subsequent weeks following diagnosis; what could be the reason behind these feelings?

Whilst no one wants to be ill or be diagnosed with an illness, if you have spent a significant amount of time either being told that nothing is wrong (basic blood tests reveal no clues) or that you are imagining your symptoms, it can be very frustrating. Repeat attendees may be labelled as hypochondriacs or time wasters. A diagnosis can provide that much needed ‘label’ that allows access to treatment or specialist care, or simply a route to being believed. In contrast, some people will feel devastated or powerless at the news of a lifelong, incurable illness regardless of the treatment options available to them. The emotions that are felt on initial diagnosis can change over the subsequent weeks, months and years. Your ultimate aim is to help the patient attain acceptance, a feeling of control or power over their own condition and to aid wellbeing in whatever way the patient needs (e.g. physically, psychologically).

Think about an occasion when you have given or witnessed a diagnosis being given to a patient – did they react as you expected? Compare how you may feel in the same situation and consider why person-centred care is so important.

It is difficult to empathise with a patient if you have not been in the exactly the same situation as they are in at that moment. As a newly qualified nurse, I was often surprised by the reaction of patients and relatives and came to realise that I was comparing their reaction with how I would have reacted in the same situation. But I was failing to consider everything in their life that had led to that moment. Experience and reflection has taught me that the only constant requirement in an emotional situation is to feel cared for. During times of stress or high emotion, each and every patient will require something different of us as their nurse and it is important to simply care with compassion and dignity. You will learn to read the signs and allow the patient to show you what they need.

How may future interactions with healthcare workers be affected by this background of illness or interaction? How could you, as a nurse looking after this patient, help to rebuild trust in healthcare systems?

If health concerns have been repeatedly dismissed or misunderstood by previous healthcare workers, it is understandable that a patient may view subsequent interactions negatively. The patient will need to regain trust in the healthcare system and staff who are caring for them. You can aid this by providing information and answering questions fully and at a level appropriate to the patient’s level of understanding. Patients with immunodeficiency (or any lifelong, chronic rare disease) will usually expect to be cared for by the same speciality for the rest of their life, so it is particularly important to establish a relationship of openness and trust. Support through patient organisations can be useful. Directing a patient to real life stories such as the ones featured above can demonstrate that they are not alone in their experience. This can be built upon during your ongoing discussion in future consultations.