There is a person in the patient

27 November 2013

Anya de Iongh

Care itself is an interaction between people, so the prefix of ‘person-centred’ should be implicit, but I guess we need to clarify that there is a person in the patient.

Since living with several neurological long-term health conditions, person-centred care has become very important for me. Instead of focusing on my dysfunctional nervous system and a plethora of treatments, for me, person-centred care is about taking a step back and looking at the life that exists in between the appointments and what matters in that life. 

By zooming out a little, the importance of medical treatments is placed next to the less-clinical but equally valuable support I need to self-manage and enjoy some quality of life. The role of multidisciplinary teams here is key, but we often miss out some of the most important members of that team – patients and their families! With a team that includes me and a range of different health and social care professionals, all bases would be covered and I would be represented as a complete person, rather than just my nervous system.  

One of the most humbling experiences of person-centred care I have experienced as a patient was with my GP during an appointment about my medications. While describing side-effects and the challenges I was facing emotionally, I became quite upset. Instead of questioning me further on the symptoms, side effects and all of that, my GP realised that getting my medications sorted was never going to solve the problem, because the problem didn’t stop with my nervous system.

He acknowledged the impact that the conditions had had on me: having to stop studies, hobbies and face limitations to my lifestyle that I’d never envisaged, let alone at the age of 22. Having seen the possibilities of a career, independence and a life, I'd had it taken away from me. My GP said that it was natural to be upset about this, that I was grieving for a life I had said goodbye to. He told me that it was normal to grieve having had a diagnosis of a long-term health condition.

To have my emotions validated, understood and articulated in a framework that gave me strategies to overcome them was very powerful. To this day, I think that was the single most useful appointment I have ever had! The agenda for that appointment was person-centred, because we could focus on what was going to make the biggest difference to me. And that day, just sorting my medications wasn’t going to do that. 

That experience was in stark contrast to a particularly tearful appointment with another clinician, who made an off-hand comment when handing me a prescription for some pain relief medication that happened to be an anti-depressant – ‘It might do something for your mood’. As distressing as my physical symptoms were, my mental health was pretty high on my agenda too, but we didn’t have a shared agenda. That appointment addressed only the issues on their agenda.

Whilst I don’t expect each healthcare professional to be a fully qualified counsellor or social worker, acknowledging everything else that is happening to me validates my experiences in a way which gives me confidence to manage them through accessing other specialist therapists and counsellors.

Person-centred care needs to look at those needs that extend beyond the medical. I have accessed some great resources and services that have enabled me to regain some quality of life, such as local IAPT services, occupational therapy and self-management courses. However I have encountered these through chance and luck – recommendations from fellow patients or from friends working in the NHS. Having person-centred care that addresses your needs and helps you work towards to your goals should be an intrinsic part of the system – designed in, rather than left purely to chance.

If my care had been consistently person-centred, my journey as a patient would have been dramatically better, with the right services and support at the right time. Can we really rely on chance for patients to stumble upon the services they need, or can we guide them there through supportive and compassionate person-centred care?

Anya blogs at http://thepatientpatient2011.blogspot.co.uk/ or follow her on Twitter,www..com/anyadei

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