Table 2 Illustrative case study: John and Sheila

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John (not his real name) is on oxygen 15 hours a day, and struggles to breathe; he attributes this to asthma. He has previously had surgery and radiotherapy for lung cancer, and also has bowel problems for which he takes medication. He attends hospital to see “the oxygen nurse” and “the cancer doctor”. He has had multiple admissions to hospital in recent years for chest infections. A nurse visits at home to give injections when required, and to see if they have everything they need, but they are not sure of her specific role. His wife Sheila (not her real name) had a hip replacement operation two year ago, and has osteoarthritis. She helps care for John who, for example, requires some help getting dressed. They had carers visit immediately after his cancer surgery, but this was a short-term arrangement, and Sheila struggles to keep up with the shopping and household jobs. He and his wife visit the GP “just if we need”, or as John said, “there has to be something wrong.” They prefer one GP in particular but, visiting as they do usually on an acute basis, they do not often manage to get an appointment with her. The only written information John has received to date and still refers to he calls his “rules and regulations”. This is a set of exercises and management techniques given to him by a respiratory nurse to help with his breathing – as his wife says “And if he does them he’s a lot better. But then he thinks he’s a lot better so he doesn’t do them.” They have never sat down with one health care professional to review treatment, care and medication or discuss plans for the future. Instead, they have gleaned what information they wish to have from a wide variety of sources, including hospital doctors and nurses, physiotherapists, various community nurses and GPs. If they have questions about an issue or concern, they might consider going to see the GP, but they rarely do so as it is difficult to get an appointment and they feel there is not much time to discuss issues. Recently a hospital doctor suggested keeping prophylactic antibiotics and steroids in the house for when his chest gets bad again, but they do not know what is happening about that. They are still confused about some aspects of John’s current medication, which has changed recently. Asked if they wished to discuss anything else concerning their healthcare, they said:John: No I don’t think so, no. No, we’re alright aren’t we?Sheila: Yes, we’re alright as long as I can keep going.John: Aye and I can keep going.Sheila: And you can keep going. You can keep breathing yes.