Our story

Our story

Our story starts with Chloe*, one of my best friends, who was admitted to a mental health ward last autumn. During her stay, Chloe met many "caring and amazing" staff, but she also encountered a couple of "bad, genuinely terrifying" staff who were behaving unprofessionally to the point they were restricting some of patients' most basic human rights, and behaving abusively towards Chloe and others.

Chloe was so shocked and overwhelmed by the situation she wasn't sure where to turn. Her experiences had rocked her trust in the NHS, so she was scared to complain while she was in hospital, in case things got worse.

Part of this was about how mental health wards work - it's not like most hospital wards, as the doors are locked and you need permission to leave. You can probably imagine there's some pretty heavy power dynamics at play between staff and patients.

Of course, this is to protect patients, yet Chloe was not alone in feeling frightened while in hospital. She was among the 20 per cent of mental health patients who feel unsafe while receiving medical care, according to research published in February 2020 by the Parliamentary and Health Service Ombudsman.

(*Chloe's story is shared with her permission. Name changed to protect her privacy.)

Fortunately, I used to work for a Clininal Commissioning Group (CCG), and I was able to phone some of my former colleagues and get the right advice for her. Chloe ended up reporting the ward to the Care Quality Commission (CQC), who immediately launched an independent investigation into the situation.

I was deeply shocked by what Chloe had told me. I was visiting her in hospital regularly, and I also talked with other patients about their experiences while I was on the ward. I was genuinely horrified by what I heard from Chloe and the other patients, especially as someone who grew up with the NHS - my grandparents worked in the caring professions, and my Dad was a nurse.


I saw the impact not having a voice can have. I saw my friend go from someone who trusted doctors to feeling she had to lie to her medical team to get out of hospital as fast as possible. Months later, she is still scared to seek medical help, even in an emergency.

I also know the impact policy can have, so working with Chloe, we came up with some ideas that could give patients on mental health wards a voice. With Chloe's permission, I entered the annual Policy Idol competition, run by the Policy Institute, King's College London, where I pitched the idea to a panel of judges.

The proposal we created was one of just eight (from 120 entries) taken forward from heats to the grand finals, where I overcame my (significant) fear of public speaking to speak in front of 80-100 leading lights from the worlds of business, academia, and policy.

To be honest, I only found the strength to get up on stage because it was so important to me to achieve change for everyone who couldn't speak up.

I wasn't there to win a prize. I was there because I saw the competition as the first building block towards achieving change, as the first step on the road to making sure future patients would never have to go through what Chloe went through. As one way I could help my friend feel safe going to A&E again if she needed to.

I thought, if nothing else, I have three minutes in front of some of London's most powerful and influential people. I have three minutes to give them insight into a world they might never have experienced - the world of a patient on a mental health world - and convince them of the need for change.

I spoke for three minutes in front of everyone, before a panel of senior judges asked me questions about my proposal (the questions were live and I had no idea what they would ask me, so I had to be ready for anything), while the audience looked on.

After the judges retired to decide how to award the prizes, the audience buzzed happily and voted on their favourite idea of the night. My pitch was awarded the prize for best analysis, awarded for substance (rigour, clarity, and use of evidence/data). Although I got up on stage alone, I was helped so much by Chloe, as well as many others who work in healthcare and generously donated their time and energy to help me develop and evidence the proposal. The prize truly represents a team effort.


I set my £500 prize money aside to help fund the pilot of my Policy Idol proposal, which is now more formally called Project Spotlight. Chloe chose this name because she believes "when patients have a voice, a bright spotlight will shine on staff on mental health wards", revealing both excellence and unprofessionalism, and thereby protecting future patients.

As I worked to develop the pilot, I knew I was incredibly privileged to have the opportunties I've had, including my education, social background, and so many personal contacts who helped advise and guide me. People I knew introduced me to others who are now making this pilot possible.

Although I wish society was equal, I know not everyone is in my position. Some people's ideas are brushed aside because of the colour of their skin, or because they don't talk a certain way, or because they have disabilities, or because they never even have time to suggest ideas because they are working two jobs just to scrape by. Some people don't make suggestions because, like Chloe, they no longer trust the system enough to say anything.

Open Source Policy was created while I reflected on my privileges, which enabled me to seek change on Chloe's behalf. A few ideas coalesced at once. I'd heard David Gilbert, the co-creator of the concept of Patient Leadership, talking about wanting a national network of Patient Leaders. I'd seen the power of connections after being introduced to so many key people through the Policy Idol competition, people without which I'd never have been able to get the idea of a pilot off the ground. I thought about the ideas I'd heard from patients, and the fears and frustrations they expressed, and everything I'd heard from clinicians about the structural factors that were leading them down the road of burnout. And I thought about the reasons I decided to change career in the first place - to make a difference in the world, to help people, and to serve society.

I went for a long walk one evening in May, and thought about all of this, and more. That was the night I had the idea for Open Source Policy as an organisation.

I wanted to create an organisation that already has all the contacts, and knows how to translate ideas from the way that people and patients talk, and put it into the language of professionals and policymakers, so that everyone can achieve change. Of course, every proposed change will be put through rigorous pilot testing, so our proposals are evidence-driven. And we'll measure the social and economic impact of the changes, too.

But you don't need to worry about all that fancy-sounding stuff. If you have an idea for change, and want to share your experiences to make the health and social care system better, all you need to do is pick up the phone, or drop us a line. We'll help you with the rest. Everyone on my team cares deeply about patients, and has dedicated their professional lives to ensuring people receive the best possible care.

No matter who you are, your voice matters. You can make a difference.

-Ash

Founder, Open Source Policy

© 2020 Open Source Policy | All rights reserved.
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