The first shock after being diagnosed with emphysema and fibrosis was when I researched it on the Internet at the local library with my eight-year-old grand-daughter sitting next to me. ‘Incurable’ and ‘progressive’ was the verdict; ‘Goodness, that means I am going to die of it’, was my first thought.
Understanding my condition, the first step in coming to terms with my diagnosis, was frightening. I bombarded my respiratory consultant with questions in the short space of time allowed in outpatient clinics. But the help I was offered to enable me to come to terms with the condition in a positive fashion was very thin on the ground. Although my clinical questions were answered, there was little understanding among the health professionals I saw that I was asking so many questions because I needed mental re-assurance. I felt sorry for consultants managing patients during this phase: really good information sessions soon after diagnosis would help reduce the psychological impact for people diagnosed with a long-term condition.
I am lucky that I am able to research my condition, but I find that more and more respiratory patients lack basic understanding, for example, about how to take their medication properly or what the medication does. They are often confused and unable to find a route to gain help. There is uncertainty as the GP often relies on the consultant to be the focus for patients’ respiratory care.
At present, respiratory patients can access extra advice – for example, about diet – through psychological and community programmes, but this support is not available at diagnosis, only further down the line after the hospital consultant or GP recommends it. Learning to live with a long-term condition needs to be done through continual re-enforcement of messages: an 8-week/16-session programme does not achieve this.
Six years ago there was little or no community support in Westminster for people with respiratory conditions, so with the help of a local physiotherapy team we launched Breathe Easy Westminster, under the umbrella of the British Lung Foundation. Now, our Breathe Easy group works with both local community groups and national organisations.
A good example is our work with Dying Matters, a service that encourages people to talk openly about death and dying. We also offer Tai Chi and art classes, as well as befriending services linked with social housing as it became apparent that people were struggling with isolation, a lack of reliable transport and difficulty in knowing what services were available. Some people with respiratory conditions that we meet are sorely frustrated, which aggravates their condition. There are often communication breakdowns around their care and many are deeply unhappy. Other national organisations offer information and guidance – although the emphasis is usually on the physical rather than psychological impact of the condition.
I have only just realised how vulnerable people with long-term conditions can feel even long after their diagnosis. I realised this when I experienced a painful, sporadic problem with my shoulder: suddenly I felt out of control and experienced a complete loss of self-management. I just felt so vulnerable and depressed. Poor communication between health professionals, delayed procedures, my concerns not being listened to, nowhere to go to find re-assurance while I awaited a diagnosis all contributed to this. As the fear that this condition would be unresolved became more intense my need for psychological support became deeper, but this support was not available.
Perhaps this is why health services are experiencing more angry patients and nurses are having to cope with aggression. Surely this is a symptom of the need for deeper mental health support for those with long-term conditions, so that patients can realise that they can change their situation for the better, and not totally rely on the current relationship of ‘being done to’.
Perhaps this fear of ‘being done to’, of someone else taking control is a major cause of patients not taking up opportunities for support. There is a fear of loss of control, fear that someone else will take over, that they will be sectioned or hospitalised indefinitely. Those individuals that take advantage of community support are usually those who are mobile, still active, self-managing and who do not feel vulnerable. We need to consider how we approach and support those people living with long-term conditions who are experiencing fear and loss of control of their lives.