Talk about me - not about my illness

I recently gave a lecture on behalf of Marie Curie, in which I explored my experiences as someone who is living with incurable cancer and Parkinson’s. I particularly focused on the many conversations I have had over recent years with doctors, nurses and other health professionals. I have had some good experiences and some poor ones. The more disappointing conversations have generally occurred when the clinician has focused on the particular disease rather than on the consequences for me.


That’s why I am pleased to help Marie Curie launch its new About Me campaign – which seeks to shift the focus away from conditions back to people. About Me explores how we can ensure that people are placed at the centre of conversations, decision making and care planning.


Focus on the individual 


Over the last few years I have encountered health professionals who know how to talk to me, understand what matters to me and have learnt, over time, to read me. However, a number of others have not shown the same skills or the same inclination to engage. The degree to which conversations are focused on and revolve around the individual sitting before the doctor or nurse makes an immeasurable difference. I firmly believe that building conversations around what matters to the individual leads to better care and to more equitable outcomes. Each of these conversations should start and end with the question: what does this all mean for the patient? And the exchange is not some formalised exchange of niceties: the answer should help shape the care the patient receives.


Symptoms aren't addressed


 


Let me give you an example. In the last few years, the single most difficult thing for me to deal with has been fatigue. But, until recently, clinicians have not really got to grips with it: it is a consequence of the diseases and their treatment but it is difficult to be precise about which is the principal driver and how my experience of fatigue might be curbed. And it is just the sort of symptom that all too easily falls between the gaps between medical practitioners. Things have been looking up in recent months since I have come under the care of a consultant in palliative care. His approach was clear: he asked me what mattered to me most and, consequently, he focused on helping alleviate my fatigue. I once asked a hospital doctor about the side effects of a new treatment which involved steroids. A friend had told me that the steroids would cause the shape of my face to change. When I raised the concern, a knowing smile broke out across his face.  He confirmed that my face might become more rounded and he wryly added: ‘Ah yes, we do tend to only tell you about the side effects that matter to us.' I sometimes think we have a basic mismatch between the concerns of clinicians and those of patients. The former are concerned with curing or curbing diseases: phenomena which may be traced through blood tests, imaging results and the like. But patients want to be well – or less unwell.  And that is quite a different matter. It is about their feelings, their hopes, their fears and their needs – psychological and spiritual as well as physical. I have a simple plea for all health professionals. Don't just talk about my blood markers, my scans, my condition. Talk to me. Talk about me.


Marie Curie would like your feedback on how care can be more about the person and their needs, not just the condition. Contact us through Facebook or Twitter with the hashtag #AboutMe, or email Caroline Weston, Policy and Public Affairs Manager on caroline.weston@mariecurie.org.uk. And you'll find more information and resources on our About Me web pages, which we'll keep updated as the campaign develops.


 


by Andrew McDonald Former Chief Executive of the Independent Parliamentary Standards Authority Andrew McDonald was, until April 2014, Chief Executive of the Independent Parliamentary Standards Authority. He was diagnosed with Parkinson’s in 2007 and with prostate cancer in 2010.  On 24 June 2014, Andrew delivered a lecture on behalf of Marie Curie exploring his experiences. Here he reflects on what he has observed and learnt from his many interactions with health services and health professionals. 


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