Read Ebook {PDF EPUB} His Gentle Persuasion by Alyssa Bailey all the talking. Apparently I talk a lot. Girl1 and Girl2 have decided that I’m not kept on the phone by talkative people who are a bad influence. It’s me. I’m the bad influence. Maybe it’s because I spend so much time on my own? Maybe it’s just me? I have noticed a development of my mother’s trait where the goodbyes take longer than the original event. Maybe it’s age? A few years ago, AA, a doctor we’d done some work with, persuaded me to participate in a video. I cleaned the house in a mad panic and spoke to the film maker. Before he arrived I’d called AA- she was calming and encouraging and all round wonderful. She was also out of the country on holiday with her family, giving time to me. She’s a gentle, persuasive, quietly charismatic woman, and she manages to achieve the impossible. I made the video, people saw it. In due course, another video was being made. I had no way out, sure didn’t I do it for AA? There have been a few quick videos since of the ‘Would you do me a favour?’ type. I don’t particularly enjoy it, but it’s quick and painless and it helps get the ‘patient voice’ message across. The small world of local health and social care may be facing speccy overload at the minute. Two public presentations this past week, a talk to medical students on Monday, something with politicians on Wednesday and another video. This one needed another few takes, but it’s done, and you can laugh at my discomfort, my nodding head and unsmiling face. I’d need better make up, or a facelift, if I were to make a habit of this sort of thing. But I won’t. There is value in all the talking. (Captive audiences, listening to me & the ramblings of my mind- what’s not to like?) But me doing all the talking isn’t the way forward. There are many, many, experienced patients and carers who have been trying to improve things for years and years. There are many patients and carers new to those roles, baffled by what they’re facing. Health and social care systems need to support, listen to and learn from all those voices. We have a way to go, together. Culture change doesn’t come easy. I like a challenge. But first, a wee sleep. 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. personal, public, patient. There’s the story about the guy asked how patients were involved in his research. He was baffled. “Of course they’re involved,” he said, “I take their blood.” Health and social care services like to think they’ve moved beyond that attitude now. There ‘user groups’ and ‘patient fora’. There are ‘expert patients’, which is a whole different ball game. Twitter is a great space for learning about #patientleaders, #PatientActivation, and all sorts of other motivational, inclusive, hash tags. More and more of my time is vanishing into social media as I try to keep up. A lot of the work that our charity does falls under the umbrella of ‘Personal and Public Involvement’ (PPI). Our survey and conference have been supported. I’m in a ‘reference group’. My colleagues are in ‘advisory groups’ and ‘fora’. We have opportunities to be heard. Anything we’ve been able to persuade the system to do has been housed in PPI. In Northern Ireland, the health and social care system has a responsibility to promote PPI. It’s built into the structures of the system. There are senior people responsible for PPI. That may be part of the problem. If someone (not everyone) has a responsibility for PPI then it’s their job (not everyone’s). It’s for that office to care about/ do/ report on. It’s not for everyone to be bothered about. It’s a job, not a value. Last year I spoke at a conference about my experience of PPI. The conference was titled “Them and us: tokenistic or realistic”. A telling choice. As far as I know, I was the only non health service person in the room. I was invited to speak by one of the managers with PPI in her remit. It’s a value to her, but to many others it’s “ her job”. Some of what I said is below. I’d be stronger in my wording now. “The … report identifies many good reasons why listening to and talking with those living with ill health and their carers is necessary, to ensure that services. are responsive and appropriate are tailored to need are prioritised correctly Acknowledge patient rights Recognise knowledge and expertise Improve levels of service satisfaction.