win by inclusion

My head spins when I learn new stuff. My head spins when I look at a dense document. Sometimes my head spins when I sit up, lie down, or stand.

But, oh, sometimes I read, I learn, and I want to cheer. This morning I actually clapped when I read this article, Health Care Hackers by Susannah Fox. Alone in the house, grubby and scruffy, I wanted to join a party and cheer. Such is power of connection. I could feel the excitement of the conference presenter and her audience. Thousands of miles away, and several years later, I could still feel the energy in the room.

I came across Fox’s article via the Stanford online course Engage and Empower Me: Patient Engagement Design, and her work connects with much of what I have been thinking recently. I’m still processing my thoughts from #SafeCareNI, a fascinating conference last week, and I’m preparing for a presentation to the NI Human Rights Commission Inquiry on Emergency healthcare. The overriding message in my head right now is “LISTEN to patients”.

In another article, Fox tells the tale of a high tech kiosk to answer questions about migrane- except it didn’t answer any questions the patients wanted to ask. Nobody had involved them in the design, so it was essentially useless. It’s entirely possible I might go off and read everything she’s ever written. Or I may go back to sleep- being an actual patient can be somewhat limiting.


Julie Bailey  (@curethenhs  )spoke powerfully about her experience, and the terrible events at Stafford hospital. She raised concerns about the treatment of her mother and many others, and suffered for doing so. Her story was chilling. Eventually a damning public inquiry was held, with implications for all health care in the UK. She talked of a ‘wall of denial’, the need for greater transparency of information and the ‘tortuous’ complaints process. Bailey presented challenges to us all (including-by my inference- our hosts, the Patient & Client Council)- as ‘involved’ patients we need to not become part of the system, we should be critical of it, not cheerleaders for it. She warned that ‘nothing is independent’. During a Q&A session, while some patients voiced anger and stories of being ignored, Bailey sat still and silent, while around her Chiefs of This and That bristled with indignation and the newsreader chairman resorted to shouting his authority. She’s seen it all before.

Wednesday is going to be a day filled with all the things. I’m going to the first NI ehealth conference. I want to attend all the seminars and fringe groups and share insightful thoughts. I want to do networking and represent our rare disease charity well. I want to learn how to connect.

Because things never come along in ones, I have to leave for part of the day, to share insightful thoughts, connect and represent the charity at a Human Rights inquiry into emergency health care in NI. Emergency care is always a challenge. Imagine how difficult it can be when the medical and nursing staff  have never heard of your condition/ conditions and don’t have the time to find out. As a patient/ parent/ carer, you will probably know more about the condition/s than those providing the emergency care- will they listen to you, or will you be removed for ‘being disruptive’ while you/ your loved one gets sicker?

We have lots to say. I am terrified. I blather away quite happily about my experience, my thoughts, my silly hair do, but this is a different beast. We have a well prepared presentation, and an impressive supporting document. We were told it was all very informal, but there’s a panel, many questions and it’s all being recorded. That has a feel of ‘formal’. I dreamt last night that it all went horribly wrong. We’re a small charity, but we can punch above our weight. I don’t want to be the one that let the side down.

If it all falls apart I can just repeat ‘LISTEN to patients’ on a loop until I remember what I’m meant to be saying.


Then I go back to the conference to learn how to get listened to, what on earth an e-patient actually is and to catch up on what I missed, with @Noirin0Neill (who is doing the e-patient stuff really well, and makes it look easy).

And, later still, my family will scoop me up and take me to a school event celebrating that the new students have lasted 6 weeks in big school, and really belong now.

Much, much later I will let you know if I survived at all.



11 thoughts on “win by inclusion

  1. I hope some of this will be recorded again. I really enjoyed watching your performance last time. You’re doing so, so much good, Fiona, with all the energy you have and then some.

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