# lived experience (blogs) — RSS Amplifier Recent posts from the 8 feeds in the RSS Amplifier directory that cover lived experience. Page: Feed: --- ## [Andy Burnham’s MoJ Team](https://www.russellwebster.com/andy-burnhams-moj-team/) _2026-08-18 · Russell Webster · Russell Webster_ MoJ Ministerial Team appointed by Prime Minister Andy Burnham. ## [A remarkable turnaround: Updating the “vile judgment” case](https://openjusticecourtofprotection.org/2026/08/13/a-remarkable-turnaround-updating-the-vile-judgment-case/) _2026-08-13 · openjusticecourtofprotection · Promoting Open Justice in the Court of Protection_ By October 2025, the local authority had concluded that 24-hour live-in care was no longer necessary and sought court approval to replace it with four daily care visits supported by assistive technology. The court agreed, bringing an end to all restrictions on contact between Caroline and her mother. ## [Disrupting livestreamed child sexual abuse](https://www.russellwebster.com/disrupting-livestreamed-child-sexual-abuse/) _2026-08-13 · Russell Webster · Russell Webster_ Research briefing on the scale of livestreamed child sexual abuse in the UK and abroad; including technological solutions and regulatory approaches. ## [Stable Is Not the Same as Fine](https://brainstormhealth.substack.com/p/stable-is-not-the-same-as-fine) _2026-08-12 · Linda Xu · Brainstorm Health_ We live scan to scan. If you’ve walked this road, you know exactly what that means. ## [Reframing masculinity and the justice system](https://www.russellwebster.com/reframing-masculinity-and-the-justice-system/) _2026-08-12 · Russell Webster · Russell Webster_ Sophie King-Hill reviews the evidence on reframing masculinity and the justice system for the Clinks Evidence Library. ## [Unlawful deprivation of liberty and the retrospective effect of AGNI: When the capacity requirement is not met](https://openjusticecourtofprotection.org/2026/08/09/unlawful-deprivation-of-liberty-and-the-retrospective-effect-of-agni-when-the-capacity-requirement-is-not-met/) _2026-08-09 · openjusticecourtofprotection · Promoting Open Justice in the Court of Protection_ Following AGNI, has P (who has capacity to make decisions about care and residence) been deprived of her liberty for the purposes of making a human rights claim? ## [The Quiet Disappearance of Everyday Affection](https://brainstormhealth.substack.com/p/the-quiet-disappearance-of-everyday) _2026-08-09 · Jason Binder · Brainstorm Health_ There is a loss that almost never gets talked about in glioblastoma. ## [California Made It Easier to Apply to College](https://admissionstidbits.substack.com/p/california-made-it-easier-to-apply) _2026-08-08 · Diana Yu Rewinski · Admissions Tidbits_ School starts soon. California public/charter high school seniors applying to UCs and CSUs should do this one thing. ## [The Relationship Complexity No One Talks About](https://brainstormhealth.substack.com/p/the-relationship-complexity-no-one) _2026-08-06 · Jason Binder · Brainstorm Health_ Glioblastoma does not arrive into perfect relationships. ## [Artificial Intelligence in Probation](https://www.russellwebster.com/artificial-intelligence-in-probation/) _2026-08-05 · Russell Webster · Russell Webster_ Probation Inspectorate report explores the current and potential uses of Artificial Intelligence (AI) within the Probation Service. ## [Refer a Friend, Earn Rewards (Sponsored)](https://crawlproof.com/a/ru9etzWCq3KO) _2026-08-05 · **Sponsored**_ Earn rewards when a friend signs up for the Graphite Business Card ## [Fit to discharge or fit to section?](https://openjusticecourtofprotection.org/2026/08/04/fit-to-discharge-or-fit-to-section/) _2026-08-04 · openjusticecourtofprotection · Promoting Open Justice in the Court of Protection_ The family members are adamant that the new care providers are “the worst agency they’ve been involved with” and report receiving somewhere between 50 and 100 distress calls each day from P in which she begs them to prevent her having to go home with those carers. Their view is that if P returns home with this care provider, then her quality of life at home would be no better than her remaining in… ## [Glioblastoma Doesn’t Need One Better Drug. It Needs a Better Strategy.](https://brainstormhealth.substack.com/p/glioblastoma-doesnt-need-one-better) _2026-08-03 · Jason Binder · Brainstorm Health_ Every few weeks there’s another headline announcing a potential breakthrough for glioblastoma. ## [What happens to restricted patients after AGNI? SJ Hilder considers the consequences](https://openjusticecourtofprotection.org/2026/08/02/what-happens-to-restricted-patients-after-agni-sj-hilder-considers-the-consequences/) _2026-08-02 · openjusticecourtofprotection · Promoting Open Justice in the Court of Protection_ At first sight, this appeared to be a straightforward example of the post-AGNI legal framework in practice. The applicant local authority invited the court to discharge the COPDOL order. But there was a complication. The P in this case is a “restricted patient”, living in the community under “conditional discharge”. ## [The Avastin Decision Is Rarely About Avastin](https://brainstormhealth.substack.com/p/the-avastin-decision-is-rarely-about) _2026-07-31 · Jason Binder · Brainstorm Health_ In glioblastoma, treatment decisions are often described as if they happen in a clean sequence. ## [The irony and the AGNI: After years of traumatic DOLS experiences, P no longer meets the criteria](https://openjusticecourtofprotection.org/2026/07/31/the-irony-and-the-agni-after-years-of-traumatic-dols-experiences-p-now-no-longer-meets-the-criteria/) _2026-07-31 · openjusticecourtofprotection · Promoting Open Justice in the Court of Protection_ We have asked ourselves umpteen times over the years what DoLS have ever done for Joe’s mother. Hopefully now, post-AGNI, we can be left to care and advocate for Joe’s mother as we have always sought to do, and the DoLS focus can rightfully shift to those vulnerable individuals who really are deprived of their liberty and don’t have anyone to advocate on their behalf. ## [“What your mother wants and what is best for P may not be the same thing”: Judge seeks family engagement and clarification of immigration status](https://openjusticecourtofprotection.org/2026/07/30/what-your-mother-wants-and-what-is-best-for-p-may-not-be-the-same-thing-judge-seeks-family-engagement-and-clarification-of-immigration-status/) _2026-07-30 · openjusticecourtofprotection · Promoting Open Justice in the Court of Protection_ I hope that the practical plan put in place by DJ Clarke will enable the family and professionals to collaborate effectively and ensure that the Official Solicitor can obtain P’s wishes and feelings. Ultimately, the decisions being made are about P’s life, and his voice must be at the centre of those decisions. ## [Important FAFSA Changes Every Student, Parent/Contributor, & Counselor Should Be Aware Of](https://admissionstidbits.substack.com/p/important-fafsa-changes-every-student) _2026-07-29 · Diana Yu Rewinski · Admissions Tidbits_ There's a new one-time, automatic ID confirmation process for some students. ## [Children and Policing](https://www.russellwebster.com/children-and-policing/) _2026-07-29 · Russell Webster · Russell Webster_ Three national studies recommend a child first approach in policing. ## [The Rebound](https://brainstormhealth.substack.com/p/the-rebound) _2026-07-27 · Jason Binder · Brainstorm Health_ There is a moment in serious illness that can fool almost anyone. ## [What This GBM Trial Reveals About the Missing Layer in Study Design](https://brainstormhealth.substack.com/p/what-this-gbm-trial-reveals-about) _2026-07-24 · Jason Binder · Brainstorm Health_ A Phase I glioblastoma trial can look complete on paper. ## [Stream Torrents & IPTV Instantly (Sponsored)](https://crawlproof.com/a/ErsVpM931Dep) _2026-07-24 · **Sponsored**_ Search magnet links and stream movies, music, books, and live TV in-browser ## [Reducing deaths among prison leavers](https://www.russellwebster.com/reducing-deaths-among-prison-leavers/) _2026-07-24 · Russell Webster · Russell Webster_ Nacro report looks at how we can reduce the number of people who die in the days, months, and years after they are released from prison. ## [Mistrusting justice?](https://www.russellwebster.com/mistrusting-justice/) _2026-07-23 · Russell Webster · Russell Webster_ ICPR and Revolving Doors share personal stories of legal proceedings in the Criminal and Family Courts ## [What GBM Families Can Teach Pharma](https://brainstormhealth.substack.com/p/what-gbm-families-can-teach-pharma) _2026-07-21 · Jason Binder · Brainstorm Health_ GBM drug development is hard because the biology is hard. ## [Moving away from a culture of blame in probation SFO reviews](https://www.russellwebster.com/moving-away-from-a-culture-of-blame-in-probation-sfo-reviews/) _2026-07-20 · Russell Webster · Russell Webster_ Probation Inspectorate report looks at promoting a culture of learning in probation around SFO reviews, moving away from a culture of blame. ## [Objections (and breached conditions) after AGNI](https://openjusticecourtofprotection.org/2026/07/17/objections-and-breached-conditions-after-agni/) _2026-07-17 · openjusticecourtofprotection · Promoting Open Justice in the Court of Protection_ Despite the obvious importance of establishing the legal basis of P’s confinement (is it or isn’t it a ‘deprivation of liberty’?), this judge – like others I’ve watched since AGNI - gave priority to considering whether P’s residence and care arrangements were in his best interests and the least restrictive necessary. ## [Resetting the approach to women’s imprisonment](https://www.russellwebster.com/resetting-the-approach-to-womens-imprisonment/) _2026-07-16 · Russell Webster · Russell Webster_ Prison Reform Trust report makes the case for resetting the approach to women's imprisonment ## [For Better or Worse, and After #1 - Our Stories](https://brainstormhealth.substack.com/p/for-better-or-worse-and-after-1-our) _2026-07-15 · Jason Binder · Brainstorm Health_ Before there were conversations about grief, there were marriages. [Listen](https://api.substack.com/feed/podcast/206915243/42b77a2dce7dba7e1642ef3aa97c1a6d.mp3) ## [The ‘fit for discharge’ story continues: 10 months on](https://openjusticecourtofprotection.org/2026/07/15/the-fit-for-discharge-story-continues-10-months-on/) _2026-07-15 · openjusticecourtofprotection · Promoting Open Justice in the Court of Protection_ In April 2025, a woman with diagnoses of mild learning disability, emotionally unstable personality disorder, functional neurological disorder, dissociative disorder and elective mutism, was admitted to hospital. In September 2025, she had surgery and was soon afterwards declared medically fit to leave. But the discharge did not happen. Instead, the case became mired in the unresolved… ## [Prisoner voices](https://www.russellwebster.com/prisoner-voices/) _2026-07-15 · Russell Webster · Russell Webster_ Professor Nick Hardwick guest blogs on the research potential of 25 years of HMI Prisons prisoner surveys. ## [The Caregiver Is Infrastructure](https://brainstormhealth.substack.com/p/the-caregiver-is-infrastructure) _2026-07-13 · Jason Binder · Brainstorm Health_ GBM care depends on people the system does not fully count. ## [Point once, get highlights (Sponsored)](https://crawlproof.com/a/9wUFCd8iAHjD) _2026-07-13 · **Sponsored**_ Get minutes worth watching from a whole game — point once ## [What 4,028 GBM Conversations Reveal About the Real Patient Journey](https://brainstormhealth.substack.com/p/what-4028-gbm-conversations-reveal) _2026-07-11 · Jason Binder · Brainstorm Health_ The official GBM journey has a shape. ## [Polly and AGNI: A family reflection on deprivation of liberty](https://openjusticecourtofprotection.org/2026/07/10/polly-and-agni-a-family-reflection-on-deprivation-of-liberty/) _2026-07-10 · openjusticecourtofprotection · Promoting Open Justice in the Court of Protection_ Polly has lived her life in the context of both the ‘ordinary usage’ of ‘liberty’ with its powerful social and political symbolism, and also the more peculiar legal definitions created by judicial interpretation of mental capacity legislation. ## [GBM Awareness Day Is About More Than Awareness](https://brainstormhealth.substack.com/p/gbm-awareness-day-is-about-more-than) _2026-07-09 · Jason Binder · Brainstorm Health_ Every July, Glioblastoma Awareness Day asks people to look toward a disease most families never expect to learn about. ## [From Cheshire West to AGNI: Rebalancing Protection, Autonomy and Human Rights](https://openjusticecourtofprotection.org/2026/07/07/from-cheshire-west-to-agni-rebalancing-protection-autonomy-and-human-rights/) _2026-07-07 · openjusticecourtofprotection · Promoting Open Justice in the Court of Protection_ One positive consequence of the AGNI judgment may be that it encourages professionals to refocus on their own responsibilities under the Mental Capacity Act. By reducing the number of cases that require formal deprivation of liberty authorisation, there is an opportunity for practitioners to develop greater confidence in undertaking capacity assessments, making best interests decisions and… ## [Surviving Means Saying Goodbye](https://brainstormhealth.substack.com/p/surviving-means-saying-goodbye) _2026-07-07 · Erika Butler · Brainstorm Health_ When Jason recently asked me if I wanted to write an article for Brainstorm Health, I immediately said yes. ## [The Game Was Never the Point](https://brainstormhealth.substack.com/p/the-game-was-never-the-point) _2026-07-05 · Jason Binder · Brainstorm Health_ I can’t believe I started a company at nearly 50. ## [When Patient Becomes a Verb](https://brainstormhealth.substack.com/p/when-patient-becomes-a-verb) _2026-06-30 · Douglas Schoenberg · Brainstorm Health_ Today, my wife completed her second week of healing (radiation) sessions, so one third of her radiation treatments down. ## [Beyond Engagement: When Lived Experience Becomes Evidence](https://brainstormhealth.substack.com/p/beyond-engagement-when-lived-experience) _2026-06-22 · Jason Binder · Brainstorm Health_ A recent article from Parexel on the evolving EU Health Technology Assessment (HTA) framework caught my attention. ## [Patients Participate in Trials. Families Make Participation Possible.](https://brainstormhealth.substack.com/p/patients-participate-in-trials-families) _2026-06-20 · Jason Binder · Brainstorm Health_ I recently read Evinova and ISPEP’s new report introducing the EACH Framework for patient-focused clinical trial recruitment. ## [Plantations: Extraction, Extinction, and Emergence](https://www.envirosociety.org/2026/06/plantations-extraction-extinction-and-emergence/) _2026-06-18 · EnviroSociety · EnviroSociety_ Plantations produce many of the commodities that structure everyday life—from the palm oil in processed foods and cosmetics to the soy that feeds industrial livestock, the timber that furnishes our homes, the rubber in our tyres, and the sugar and tea that fill our cupboards. Yet plantations are often imagined as relics of a colonial… Read More ## [Early Engagement Is Good. Continuous Engagement Is Better.](https://brainstormhealth.substack.com/p/early-engagement-is-good-continuous) _2026-06-12 · Jason Binder · Brainstorm Health_ Bristol Myers Squibb recently published a white paper on early patient engagement in drug development. At its core is a simple but important idea: patients, caregivers, and advocacy organizations should be involved before key decisions are made, not after. The paper argues that lived experience should help shape development strategy, trial design, recruitment approaches, communications, and… ## [Every Person Saw One Version of Me](https://brainstormhealth.substack.com/p/every-person-saw-one-version-of-me) _2026-06-10 · Angeline Giammona · Brainstorm Health_ The weight of caregiving isn’t invisible because it’s small. It’s invisible because it’s everywhere. ## [The Future of Oncology AI Isn’t Intelligence. It’s Access.](https://brainstormhealth.substack.com/p/the-future-of-oncology-ai-isnt-intelligence) _2026-06-02 · Jason Binder · Brainstorm Health_ After a weekend at ASCO, I finally had a chance to come home. ## [Our Founder Writes for Startups Magazine](https://www.theprominencecollective.com/post/our-founder-writes-for-startups-magazine) _2026-06-01 · Edwin Buckley · The Prominence Collective_ The Prominence Collective’s founder, Edwin Buckley, has recently written for Startups Magazine, sharing insight on why founder storytelling is becoming one of the most important drivers of PR visibility. You can read the full article here. As a publication focused on founders, innovators and high-growth businesses, the piece explores a clear shift in how visibility is built. It is no longer shaped… ## [From Flood Rescue to Front Page: Reactive PR in Action](https://www.theprominencecollective.com/post/from-flood-rescue-to-front-page-reactive-pr-in-action) _2026-05-01 · Edwin Buckley · The Prominence Collective_ Reactive PR is often described as speed, but in practice, it is about recognising the right moment and acting on it with clarity, judgement and intent. When handled well, it allows real-world moments to translate into meaningful visibility that strengthens reputation rather than simply creating attention. Matthew Haywood When our client Matthew Haywood recently spotted a car stranded in rising… ## [Why Leadership Visibility Matters More Than Ever](https://www.theprominencecollective.com/post/why-leadership-visibility-matters-more-than-ever) _2026-04-01 · Edwin Buckley · The Prominence Collective_ In today’s business landscape, expertise alone is rarely enough. Founders, executives, senior leaders and industry experts are increasingly expected to be visible, credible and recognised beyond the day-to-day of their work. Whether building a business, leading an organisation or growing influence within an industry, people want to know who is behind the brand, what they stand for and why they… ## [We can only bounce back so many times before we need to be picked back up](https://mycuppajo.substack.com/p/we-can-only-bounce-back-so-many-times) _2026-03-30 · Joletta Belton · MyCuppaJo_ Revisiting something I wrote in April 2020 on chronic pain and resilience ## ["Dream School": A #HowIHowTo Guide on College Research, Spotlighting Occidental College](https://admissionstidbits.substack.com/p/dream-school-a-howihowto-guide-on) _2026-03-27 · Diana Yu Rewinski · Admissions Tidbits_ If the first thing you did when you got your hands on a copy of Jeff Selingo's latest book, Dream School, was flip to the appendix to see the new "It" colleges, you're missing the point. ## [Cocoon Marks Parent Mental Health Day](https://www.theprominencecollective.com/post/cocoon-marks-parent-mental-health-day) _2026-03-15 · Edwin Buckley · The Prominence Collective_ When we began working with Cocoon at the end of last year, it was with a clear long-term vision. The Yorkshire-based pregnancy and women’s wellbeing clinic, founded by Sam Naughton in 2024, is building something carefully considered and deeply human, a space that combines high-quality clinical care with meaningful emotional support for those navigating fertility, pregnancy, baby loss and early… ## [Images and rituals of resistance at COP30](https://www.envirosociety.org/2026/03/images-and-rituals-of-resistance-at-cop30/) _2026-03-11 · EnviroSociety · EnviroSociety_ At the heart of the Brazilian Amazon, in Belém do Pará, my field research at the 30th Conference of the Parties to the United Nations Framework Convention on Climate Change (COP30/UNFCCC) involved me in circumstances I could never have imagined and which led me to write this account. A fire broke out in the tents… Read More