27 October 2015

UCLPartners Education Conference 2015: A patient’s perspective

Maria Piggin

As a patient, I found the experience of attending the UCLPartners Education Conference 2015 -“Educating for patient-centred care”, a very valuable insight into the appetite within the medical profession to change the culture of care to be more patient-centred.

Dr Clare Morris’s reflections on her experience of being an acutely ill patient were especially powerful. However, I think her presentation would have benefitted the tone and energy of the day if she had been one of the first rather than one of the last to speak. She was able to provide insights which patients would never be able to do due to the fact that she had the benefit of ‘knowing the system’ in which she found herself a passive participant. Dr Morris’ suggestions about how junior doctors’ time could be better utilised to benefit both their own learning and the care of patients appeared (at least from a patient perspective) to be eminently sensible and worthy of immediate implementation. These suggestions included requiring a junior doctor (whenever they were working) to spend 20 minutes with a patient whose care they were following not only to provide continuity for the patient but also to facilitate their own learning in patient-centricity.

There were two workshop sessions throughout the day from which attendees had nine different sessions from which to choose.

I attended Delivering person-centred care: Implication for the commissioning of services and education. The session concluded with each attendee writing a pledge to do something in their own practice to facilitate delivering person-centred care. I really got the impression that the attendees genuinely desired change and intended to carry out the pledge they had made.

I also attended the workshop session entitled Patient and public involvement in undergraduate medical education. Aware that the GMC has stated that patients should be involved at all stages of medical school training including designing the curriculum, UCL initiated a scheme which invited patients into the medical school for an open evening to enhance closer ties between patients and students. At this event, patients were invited to translate a personal experience into cartoon format for the purposes of ‘show and tell’. As successful as this initiative had clearly been, I was hoping the session would have provided more of a forum to brainstorm ways in which attendees thought that patients and the public could be involved in medical education. I certainly have some ideas. The first is well described by the Indian proverb, Tell me a fact and I’ll learn. Tell me a truth and I’ll believe. But tell me a story and it will live in my heart forever which featured as a theme in another workshop session. It seems to me that medical students are more likely to remember a patient’s story delivered to them by that person. As much as it may be a practical impossibility for numerous patients to address medical students, perhaps patients’ “stories” could be recorded and viewed by students as part of their training. I think this would be really valuable especially in the area of rare diseases where hearing a patient speak about their often random (and sometimes quite interesting) combination of symptoms may serve to resonate with a student in their future practice and assist in the early diagnosis of such a disease.

One question posed by an attendee was If care is not patient -centred, what is it centred on? as surely we need to know this answer to be able to address it. Unfortunately there was not enough time to debate this, however one patient on the panel considered the answer to be “the perceived efficiency of a system”.

The day reinforced that a change in culture and in training methods are two key principles to delivering patient-centred care. ‘Buy-in’ is clearly key. I couldn’t help wondering how the rest of the medical profession who did not benefit from attending this conference can access the sort of insights presented and be motivated to effect change. If incorporating patient-centred care into the curriculum of medical schools is successful, that (in theory) may address training the doctors of the future, but how does this message get through to those currently on the front line whose medical training was not so forward thinking? Perhaps one way is by training in patient-centred care being made mandatory in continuing professional development courses.

As much as the ethos of the Five Year Forward and the Vanguard sites are certainly revolutionary in their aspirations, it seems that patient-centred care also needs to start outside these models with baby steps in everyday practice.

Examples of where these kind of simple changes had been implemented in practice were given throughout the day byDr Irene Gafson, Mr Hammad Malik and Dr Amy Jebreel. Each example utilised existing resources such as 3D joint models to explain surgical orthopaedic procedures to patients and encouraging trainee doctors in psychiatry to read an autobiography of someone with schizophrenia in order to develop empathy. One would hope that if all clinicians were encouraged and empowered to find ways to make even simple changes to their individual practices, the culture would have to eventually change. It may take a while but you have to start somewhere right?

Maria Piggin is a patient advocate and trainee on the European Patients’ Academy on Therapeutic Innovation (EUPATI) Course on the Medicines Research and Development Process. She recently established PNH Support, a charity to support and advocate for those living with the rare disease, paroxysmal nocturnal haemoglobinuria, in England, Wales and Northern Ireland.

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