The most inspiring talk at the Tackling Long-Term Conditions: Health and Well-being conference was a masterclass given by Dr Charles Murray of the Royal Free Hospital in London. A gastroenterologist, he discussed inflammatory bowel disease (IBS) and the impact on patients' quality of life. What struck me the most that as a top doctor he had considered this! It is something I have found missing through my experience as a patient.
He admitted that doctors often dramatically underestimate the impact that conditions have on people's lives. When it comes to quantifying impact, the box-ticking questions like bowel movements are far easier to record than the true emotions of these patients. Importantly he commented that "when patients are supported with information, the disease becomes something they have but doesn't define them." With the importance of information understood (a key principle of self-management), doctors and their clinical and non-clinical team could really revolutionise the way they support patients in caring for themselves as Expert Patients.
He spend time on the importance of emotional well-being and has been involving psychological services in some clinics, which is amazing to hear! I want my doctors to be like that!
He made a very interesting point about timing - in his experience, patients need more time with doctors in the time just after the diagnosis that later on in the disease. That was because they needed the time to consolidate the information they had with the clinical team. The assumptions that staff make about understandings of the condition and treatments can often be false. I can agree with that from my own experience.
A frequent issue that was raised was how to measure quality of life? Several examples were given such as IBDQ, SIBDQ, SF12v2 and SF36. With well-being linked to functional capacity of the patient, he felt that better measuring tools could exist.
It was a fascinating talk, and so refreshing to hear the medical profession raising and discussing these issues instead of just us patients!