Joan’s Story

Joan has Chronic Obstructive Pulmonary Disease (COPD) which often gets her down and sometimes stops her doing the things she would like to do. Her specialist physiotherapist has talked to her about this and suggested that pulmonary rehabilitation might help her to manage her symptoms. Joan understands this but is overwhelmed and often doesn’t attend the appointments that are made for her. She also struggles to follow the advice she has been given and has had a number of emergency admissions to hospital. This is all making it harder for her to manage her own condition, and is also not good use of health resources.

To find out how best to help Joan, her therapist asked her to take part in a Patient Activation Measurement ® (PAM®) survey. This survey gives an indication of how well somebody is able to manage their own health and wellbeing. The PAM showed that Joan had an ‘activation’ level of one, which is very low. People at this level often lack confidence, have limited knowledge regarding their care, find it difficult to follow suggested treatment options, and may struggle to achieve goals.

In weekly meetings at her practice/in her own home with a member of the therapy team, Joan was able to talk about the things that affect her.  Together they identified the barriers that stopped her from keeping appointments and taking a more active role in looking after herself. It became clear that one of the issues was Joan’s uncontrolled Crohn’s disease: because of bowel problems she felt unable to leave the house. Together they have now drawn up an action plan, and her GP has helped to sort out the management of the Crohn’s. For the first time in years Joan went out to do her Christmas shopping with her daughter and independently arranged to attend pulmonary rehabilitation in a community setting.

After seven months, Joan went through the PAM survey again.  This showed that her score had significantly improved, with an increase of over 40%. This improvement has had a positive impact on her knowledge, skills and confidence, as well as her take up of services.  In the year previously Joan had had nine outpatient appointments and attended only six of them, plus she had two emergency admissions. In the following year she was much more engaged and willing to seek help. Of her ten subsequent outpatient appointments, she missed only one and had only one emergency admission. These may be relatively small steps, but they are making a big difference to Joan’s wellbeing.