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Views of a chronic patient
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Holding my breath at appointment number four | Managed by Me
https://managedbyme.wordpress.com/2015/03/26/holding-my-breath-at-appointment-number-four
Writing and public speaking. Writing and public speaking. March 26, 2015 /. Holding my breath at appointment number four. I tell myself. I repeat this mantra over and over, sometimes with slight variations. I am totally fine. I’m actually on appointment number four of 2015. I wrote about the first one here. The second and third were long appointments for an immune-boosting infusion (12 hours added on to my calculation for the year). But this appointment is for a scan of my thyroid. While I lie on the exa...
Writing and public speaking | Managed by Me
https://managedbyme.wordpress.com/writing-and-public-speaking
Writing and public speaking. Writing and public speaking. Writing and public speaking. Sometimes, I write stuff. I’ll list it here and you can take a look if the mood takes you! I also speak publicly about my experiences and on topics including patient engagement, involvement and leadership. Links to a few of these talks are posted below. Patients at Healthcare Conferences: What does true involvement look like? With Anya deIongh, BMJ (2015). Five Tips on How the NHS Can Engage Patients and the Public.
Get in touch | Managed by Me
https://managedbyme.wordpress.com/get-in-touch
Writing and public speaking. Writing and public speaking. Leave a Reply Cancel reply. Enter your comment here. Fill in your details below or click an icon to log in:. Address never made public). You are commenting using your WordPress.com account. ( Log Out. You are commenting using your Twitter account. ( Log Out. You are commenting using your Facebook account. ( Log Out. You are commenting using your Google account. ( Log Out. Notify me of new comments via email. Follow Blog via Email.
Appointment No 1 for 2015 | Managed by Me
https://managedbyme.wordpress.com/2015/01/09/appointment-no-1-for-2015
Writing and public speaking. Writing and public speaking. January 9, 2015 /. Appointment No 1 for 2015. As a kind of challenge, I’ve decided to keep a note of the amount of time I spend attending health-related appointments and see how it stacks up over a year. Just how much time do I actually spend on managing me? I’m not so sure. The lovely and amazing Kate Granger. Macmillan Cancer Support have a value-based standard. Holding my breath at appointment number four. What this is all about…. Despite not e...
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Patients and Pastries Included: Why we need partnership in policy making | Future Patient – musings on patient-led healthcare
https://futurepatientblog.com/2015/07/31/patients-and-pastries-includedwhy-we-need-partnership-in-policy-making
Future Patient – musings on patient-led healthcare. About the Future Patient Blog. Patients and Pastries Included: Why we need partnership in policy making. July 31, 2015. It’s time for patients to be true partners in healthcare policy. Partly because I want pastries. But more seriously. My research on the benefits of patient and public involvement in service improvement (See ‘The Seven Benefits of Engagement’. Showed that it can:. Yield richer insights into problems. Offer a wider set of solutions.
Good Death, Bad Death: Notes for my mum and dad | Future Patient – musings on patient-led healthcare
https://futurepatientblog.com/2015/07/14/good-death-bad-death-notes-on-my-mum-and-dad
Future Patient – musings on patient-led healthcare. About the Future Patient Blog. Good Death, Bad Death: Notes for my mum and dad. July 14, 2015. Five years ago, dad came out of hospital to die. Suffering from cancer, he went to stay at a hospice. The carpets were plush, the fixtures clean and tasteful paintings hung on the wall. Real flowers. And, when we retired to the lounge (with small kitchenette for those ‘patients’ who were still able to microwave ready meals brought in by loved ones), there was ...
Just In Case: Patient-Led Solutions to the A&E problem | Future Patient – musings on patient-led healthcare
https://futurepatientblog.com/2015/01/07/just-in-case-patient-led-solutions-to-the-ae-problem
Future Patient – musings on patient-led healthcare. About the Future Patient Blog. Just In Case: Patient-Led Solutions to the A&E problem. January 7, 2015. Like many people who spout rhetoric about the NHS, I am guilty of indulging in the blame game. Some professionals and policy makers ‘blame’ patients for ‘inappropriate attendance’ at A&E and we have millions spent on campaigns to urge us to ‘choose wisely’ when thinking about heading that way (assuming that we do not make rational choices). I think it...
The Patient’s Dozen – What Matters to Patients and Carers | Future Patient – musings on patient-led healthcare
https://futurepatientblog.com/2015/05/14/the-patients-dozen-what-matters-to-patients-and-carers
Future Patient – musings on patient-led healthcare. About the Future Patient Blog. The Patient’s Dozen – What Matters to Patients and Carers. May 14, 2015. This is an article I wrote some time ago. I hope it will be useful to Patient Leaders and others seeking to influence change. It stems from being fed up of repeatedly being asked in tedious committees as a representative, ‘so, what do patients think? 8217; Well, this perhaps…. Ask any user of services what matters to them. The things that matter to pa...
Being Weird: The Plight of Patient Leaders | Future Patient – musings on patient-led healthcare
https://futurepatientblog.com/2015/07/04/being-weird-the-plight-of-patient-leaders
Future Patient – musings on patient-led healthcare. About the Future Patient Blog. Being Weird: The Plight of Patient Leaders. July 4, 2015. A few seasoned patient and public involvement practitioners were discussing the challenges to getting patients engaged in healthcare yet again. We all laughed knowingly. The implication was that few people truly wanted to do this sort of work. There was something odd about us round the table. Yes, we are. Experiences that only echo the marginalisation of our patient...
The Engagement Industry | Future Patient – musings on patient-led healthcare
https://futurepatientblog.com/2015/01/22/the-engagement-industry
Future Patient – musings on patient-led healthcare. About the Future Patient Blog. January 22, 2015. I wrote this piece a year ago, but thought it was worth fishing out again…. Involvement of ‘lay’ people in the NHS remains on the terms dictated by those within the system… Health related organisations have become compromised instruments of co-management of the NHS, accepting a place at the table in order to secure funding and recognition”. So said the late Bob Sang, a passionate citizen-advocate, in 2002.
Patient as Hero | Future Patient – musings on patient-led healthcare
https://futurepatientblog.com/2015/05/03/patient-as-hero
Future Patient – musings on patient-led healthcare. About the Future Patient Blog. May 3, 2015. Halfway through an inspirational talk at a conference, I began to feel uncomfortable. As the eloquent speaker told a gut wrenching story of injury, despair, recovery and nationally recognised achievement, I became guilty about my unease. People were in tears. Emotional tweets were retweeted and favourited. And I left, puzzled about my reaction. And then I got it. Mostly my tweets were ignored. But a few pe...
Integration: what a Patient Director could do to help | Future Patient – musings on patient-led healthcare
https://futurepatientblog.com/2015/06/24/integration-what-a-patient-director-could-do-to-help
Future Patient – musings on patient-led healthcare. About the Future Patient Blog. Integration: what a Patient Director could do to help. June 24, 2015. One of the possible boons of my new role of Patient Director at Sussex MSK Partnership (Central) is to bring together another meaning of the word integrate – the usually disparate streams of work going to enable patients to be more in control of their care. In that article, I described how patient experience teams report upwards through hierarchical laye...
Future Patient – musings on patient-led healthcare | Healthcare | Page 2
https://futurepatientblog.com/page/2
Future Patient – musings on patient-led healthcare. About the Future Patient Blog. Patients as Partners for Change. June 18, 2016. I have long argued for a different way to ‘involve’ patients in healthcare decision-making. I am fed up with the traditional approaches that buffer change patients as feedback fodder or slotted into institutionally narrowed ‘representative’ roles. I have written about this here. Now, if we really want solutions to our current healthcare challenges, we need to:. In its first y...
Uncategorized | Future Patient – musings on patient-led healthcare
https://futurepatientblog.com/category/uncategorized
Future Patient – musings on patient-led healthcare. About the Future Patient Blog. Let’s Talk About Power – Here Come The Patientistas. October 19, 2016. Let’s Talk About Power. Is the fact that we don’t know what to call ourselves patients, users, clients, etc or whether we are patient leaders, partners or advisers, etc symbolic of a deeper problem? Maybe it’s not just the name. Maybe we are too coy about talking about power. Wait to be ‘let in’? Then the NHS will continue to fail. But then again, t...
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Managed by Me | Views of a chronic patient
Writing and public speaking. Writing and public speaking. March 26, 2015 /. Holding my breath at appointment number four. January 9, 2015 /. Appointment No 1 for 2015. January 5, 2015 /. What this is all about…. Follow Blog via Email. Enter your email address to follow this blog and receive notifications of new posts by email. Join 14 other followers. Going to beat this cancer! Holding my breath at appointment number four. Appointment No 1 for 2015. What this is all about…. Follow me on Twitter @ceineken.
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managedbymiscellanea | The real world according to a saved girl
The real world according to a saved girl. Asymp; 2 Comments. I was happy to speak to him! I am ALWAYS happy to speak to him because I can be completely transparent and silly with him. We talk about everything and nothing, but to be honest our conversations are pure and therapeutic. I wouldn’t trade a single anecdote not one sentence not one word or punctuation. We are free in our dialogue with one another and that my whims is priceless. Priceless, until tonight that is… TONIGHT he said. It’s the th...
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