PATIENT POWER
About 20 years ago one of my patients asked me about an episode of illness which she had experienced 15 or 20 years earlier, which still troubled her because she had never really understood what had happened. We were able to track down the relevant correspondence, in which an eminent specialist had, erroneously as it turned out, made a diagnosis of renal amyloidosis. In his letter to her then GP, he explained that, because of the gravity of the prognosis, he had not disclosed the diagnosis to the patient.
Many of us are still able to remember those days of extreme medical paternalism and cringingly deferential patients. We have moved on, mostly appropriately, sometimes clumsily, in professional, educational, and policy arenas, but despite some of the rhetoric, we have a little way yet to travel. Service organisation and communication can still seem to be more reflective of the needs of professionals than of patients.
In her editorial Patricia Wilkie, President and Chair of the National Association for Patient Participation, sets out a clear agenda for making patient participation a reality. This includes the need for better information, continuity, access, involvement in decision making and participation in treatment, an understanding of governance and funding structures, and the need for honesty and transparency. Many of these topics are the subject of articles in this issue of the BJGP.
Protheroe and colleagues surveyed the patient information materials provided in a number of general practices, and found that many fell short of the recommended levels of readability and comprehensiveness. Litchfield and colleagues interviewed patients who had recently had blood tests and needed to get their results. They encountered a number of problems in doing this, in particular considerable delays in getting the information and difficulties navigating practice telephone queuing systems.
Smiddy and colleagues’ study of the development of patient reference groups in general practice also reports rather negative findings, concluding that despite financial incentives to support patient and public engagement and involvement, many practices remain unable to:
‘... capture the local voice of patients and limit the chances for local people to engage in debates regarding provision and commissioning of services ...’
A systematic review, led by Freda Mold and colleagues, found evidence of limited implementation of systems to allow patients access to their electronic health records and continuing concerns on the part of clinicians about possible increased workload. There is still more to be done.
The phrase ‘integrated care’ has become one of the mantras of this round of policy debate but, like other buzz-terms such as translational research and privatisation, means different things to different people. It is, however, centrally placed in the policy thinking of both major political parties. To continue this debate, we asked five experts to tell us what they thought integrated care should look like in five important clinical fields: child health, older people’s health, cancer, mental health, and multimorbidity. Please read this special feature in our Debate & Analysis section and tell us what you think.
You may, by now, have noticed that the BJGP has a much improved website. It looks better, works better, and provides much better access to the journal content and to the BJGP archive. We are beginning to use this site to add items of news and controversy, and this month have launched the BJGP blog (bjgpblog.com), which our Deputy Editor, Dr Euan Lawson, has devised. Please think about contributing to the blog, as well as using eLetters and social media links to comment on what we publish and to tell us what you think. A dedicated section of the blog, Innovations in Practice, will provide a new home for all the bright ideas about the latest ways of working, thinking, and delivering patient care that the journal receives every week.