Updated: Aug 18
(What I have learned as founder and CEO of Fixers)
The people are rising. They want to be listened to and know that their voices have been valued as the world around them changes; they want to shape that change; they want to hold institutions to account.
There are lots of people chipping away at the complex and strong institutional defences but they are at a disadvantage; they don’t have the time and resources to match. Coming into vision are new types of ‘groupings’, movements formed to be more effective at getting organisations to listen. Often its personal experience that sits at their heart.
This blog is based on my experience of creating and being immersed in ‘Fixers’, a movement of young people. Fixers was created from a blank sheet. The project went looking for young people (16-25) and responded to what they wanted to do, quickly establishing a framework which put them at the heart of the matter. Young people, the Fixers, were able to use their individual experiences as a source of valid and valuable contributions to society. They set the agenda for change within their own framework of meaning and owned their personal narrative. Later, by bringing these narratives together and at scale, the Fixers created the powerful voices of experience across a wide range of personal and policy areas. [Links at the end if you want to find out more]. Overtime we came to talk about ‘Voice as Value’ which you can read about here.
I have chosen Claire’s story because not only does it address one of the myths of people who have eating disorders but it also explains what it is like to feel powerless, having to listen to and trust professionals with your well-being. This is Claire’s story in her own words.
SECTIONED (produced by Fixers 2015)
How do YOU feel?
Whilst Claire’s focus for her film was other young people, who in her experience ‘ thought the illnesses are fashionable and don’t understand the harsh realities of life with a mental health condition’, she also had a strong message for professionals in mental health services; listening and trusting in a young person’s story was something that could change their practice and make a significant difference to their patient.
Claire told her story on many media platforms, local and national and in a range of other settings. She joined forces with other Fixers working on the same issue and in 2015 they met the UK’s leading experts in the field to tell their stories and make their own recommendations about the way forward. I believe their work was instrumental in bringing about a better understanding of how it feels to have an eating disorder for the experts and therefore how practice needs to change to improve outcomes. This goes hand in hand with seeing more coverage of the issue in the media and so starting to make it a topic of conversation instead of being hidden away like the eating disorder itself.
Dr Dasha Nicholls then Consultant Child and Adolescent Psychiatrist and Joint Head of the Feeding and Eating Disorders Service (FEDS) at Great Ormond Street Hospital and Honorary Senior Lecturer at the Institute of Child Health hosted the Fixers in front of audience made up of experts in the field and interested third sector organisations. Now, Reader in Child Psychiatry at Imperial College London and Honorary Consultant Child and Adolescent Psychiatrist, she says: “In my work in the field of eating disorders and mental health of young people I have become convinced that the way to influence policy and produce system change is through a combination of data (evidence) and personal stories. The voice of experience creates an emotional resonance that is far more powerful than that of clinicians and other experts. ‘The ‘Feel Happy [Eating] Fix’ was a great example of how to harness these voices, and I use Fixers videos in all my teaching’.
My personal understanding from many young people with eating disorders is that when things seem out of control in your life, there is one thing you can control; what you eat. As you eat less and less anorexia takes over, controlling you and those around you. The anorexia wants you to eat less and less; the system wants you to re-feed. To do this you have to submit to others to do what they believe is in your best interests. You must give up your power as it now is. Your last stand. This is a simplistic view of what is a complex issue, but in broad terms it helps to explain what is happening. Claire eventually chose to let go, have her power taken away to take a chance to get better. She felt that her voice was not valued in this process and that the system kicked in to process her condition.
At Fixers we all knew Claire as a real person, a mental health campaigner whose courage and honesty left a mark on all those she met; she was not ‘an anonymous faceless case’ on a list.
Sadly, it wasn’t the last time that Claire would find herself in hospital, frightened and secluded. There is another film to watch her on this BBC report that will tell you what happened. Suffice to say that changes in practice, things she was fighting for, hadn’t come in time for her. She was part of the change that is happening now though. I write this in the sure knowledge that her campaign lives on not only through the voices of other young people and the professionals whose lives she touched but also in the digital mark she has left behind.
MEET JAYME-LEIGH [not her real name].
Imagine the scene. Kath Evans, now Director of Children’s Nursing at Barts’, then NHS England Lead on Patient Experience had encountered Jayme-Leigh wanted to tell her story to people working in children’s health and see the impact. In 2015, Kath was a keynote speaker at the RCPCH conference and agreed to present Jayme-Leigh’s story. There were some 2000 children’s health professionals in the auditorium. Unbeknownst to the gathered throng Jayme-Leigh was also in the auditorium watching and listening.
BEHIND THE CURTAIN (produced by Fixers 2015)
How do YOU feel?
Jayme-Leigh had lived with this story for years before she became a Fixer. She was concerned that some healthcare professionals did not always understand young people’s needs and now, as a teenager she wanted to is urge doctors and nurses to see things from a patient’s perspective, so that other young people wouldn’t experience what happened to her. She says: “I was completely powerless, as a child I could do nothing, I had no control and I was scared”.
Kath reports that after showing Jayme-Leigh’s film “you could hear a pin drop, we debriefed afterwards, she said ‘that’s what I [Jayme-Leigh] wanted, for others to see and feel what it’s like using services’.“
Dr Damian Roland was in the audience that day. Amongst other roles he is a Consultant in Emergency Paediatric Medicine. Damian wrote a blog about what he had experienced.
He writes: “…. the video certainly makes you think about your own practices. What I am deliberating at the moment is how to ensure Jayme-Leigh’s experience does not happen in my own hospital, or anyone else’s for that matter. Sharing the video widely is one way of doing this but I am forced to reflect on my own medical training and am shocked to be unable to recall more than one lecture on patient experience.
“Have I really delivered anything in regard to improving patient experience in the last year? I am ashamed to say probably not but this video has given me new impetus to find ways of role-modelling, teaching and improving behaviours which will benefit the children and young people who visit our department”. (You can read all of his blog HERE.)
I have been in touch with Jayme-Leigh who in April became a fully qualified nurse working with the RAF. She is now in the front-line responding to the Covid 19 emergency. I asked her for her reflections of what happened.
She says: “The whole experience was very surreal. At the time watching the film whilst in the same room as so many healthcare professionals was very daunting. I felt embarrassed and nervous, even though no one knew it was me I felt extremely vulnerable. It’s crazy how even though I had shared this experience that had such an impact on me I still felt embarrassed and had the perception that people thought I was attention seeking, although I think that may have been influenced from the experiences I had whilst having treatment.
Now being a health care professional myself, I have a very different view on the situation. I see great practice day in and day out however, I also see so many poor communications from health care professionals and in most cases it comes from consultants, the individuals that the public have the most respect for and trust in. The fact that I have influenced some healthcare professionals to reflect on their practice is very liberating. I use the experience in my own practice. Working in the NHS can be very demanding and it’s so easy to let these demands get on top of you resulting in break down of communications from being under pressure. Therefore, it’s so important to just take a minute to reflect, as every contact counts and although the tasks you perform as a professional become a routine task for you, they may be unfamiliar and daunting for you patients when they are at their most vulnerable.”
The question of course is; can you bring this approach to scale? Can it have an impact nationally? I have many examples but this one provides a lot of food for thought.
INTRODUCING ‘THE TROUBLE WITH SEX IN SCHOOLS’
As we listened to the Fixers working on their own individual ‘Fix’ we would look for patterns in what young people were telling us. This, combined with young people telling us they would like to meet other Fixers working on similar issues, gave birth to ‘The Feel Happy Fix’ series. We tackled issues arising from, for example, autism, gender, child sexual abuse and exploitation, mental health, and social mobility. These were national platforms created by the Fixers themselves and involving hundreds over time. As we listened we were starting to hear more about ‘sex in schools ‘. Discussions about mandatory sex education had been going on in Government for some time. We raised the matter with Maria Miller, Chair of the Women and Equality Committee.
On the 19th April 2016, we launched “The Trouble with Sex in Schools”. Maria Miller, Chair of the Women and Equality Committee, said: ‘It’s clear from the young people we’ve heard from that sexual harassment and sexual violence in schools is having a profound impact on their day to day lives. We need to address this issue now and stop it from blighting the lives of another generation of young people – both male and female.”
SEXTING, BANTER AND PORN || SEX IN SCHOOLS (produced by Fixers 2016)
How do YOU feel?
The story had been embargoed and we had worked behind the scenes providing stories, young people to speak, a report, a film and shorts to work on a wide range of channels and media outlets. The issue was given blanket coverage on all the major networks and media, local and national; it was a phenomenon. As a multi issue charity with no agenda of our own we had some very interesting discussions with some channels explaining that we could only tell them what the Fixers had told us and that we had no opinion of our own. You can read more about the story HERE
This was young people calling on the government to do something about it.
At a debrief session with several government departments sometime later, Maria Miller explained that she had never seen such a mass of evidence presented to an Inquiry before.
On 1 March 2017, the then Education Secretary, Justine Greening, announced her intention to put ‘Relationships and Sex Education’ on a statutory footing. So less than 12 months later we saw a huge change happen. This of course wasn’t simply a success story for Fixers because so many other, charities and individuals had been raising this issue for a long time. But I do believe that the Fixer’s experiences, brought together and expressed in their own words, provided an understanding of the issue that could not be ignored any longer. I also note that we had put the issue firmly in the public domain for parents, grandparents, teachers and many others. The pressure of media coverage and the surge in support to do something about it surely tipped the balance. (As an aside, the Fixer’s report triumphed in the best use of evaluation or research category at the Public Sector Communications Awards 2017 – beating off stiff competition from organisations including North Yorkshire Police and Portsmouth City Council.)
SO WHAT DOES THIS ALL MEAN?
When people speak the world can change, but only if you are prepared to listen! This is more than simply hearing those voices. It’s about what you do next to show them that their voices have been valued. This means that they know they have contributed and that their efforts are appreciated. In my experience people tend to understand that institutions can’t respond to every request for change, but it doesn’t mean they can simply maintain a deafening silence. I was disappointed to see the government’s next steps on sex and relationship education. They were sitting on mounds of evidence from hundreds and hundreds of people and agencies and yet they decided to launch a consultation on what the content of the syllabus for schools should be. What does this say about being listened to? They saw fit to ask us all again to provide the same information but reworded, in our time and at our expense. Disappointingly I suspect that young people won’t get what they asked for! Is this listening and acting? I don’t think so! But how do you challenge this powerhouse? I don’t have the answers.
What I do know is that there are and have been 25,000 Fixers chipping away at the institutional barricades. Every day you read and watch stories about people committed to creating change because something has happened to them or their family and they don’t want it to happen to someone else.
Coming into view are a number of movements that are challenging the status quo. Fixers was one of them, but just look at Black Lives Matter, Greta and the climate strike, Me Too, Money Saving Expert, the women fighting to improve safety in the NHS (Cumberland review and the Shropshire baby deaths). In the Covid 19 crisis we have seen local people rise up to make sure that neighbours and others are well looked after.
The truth is organisations are made up of people and it is people that communicate. Organisations are quick to tell staff and volunteers how to ‘speak’ but where is the policy about listening? Communication is a transaction and is a responsibility which demands honesty, courage and accountability to the people you are there to support.
Telling your story, sharing your past experience to explain why there is an issue that needs sorting is an enormously powerful tool.
If you watched the films embedded above I would think they made you feel something, perhaps empathy with the person and the issue. You felt the power of a personal experience. I hope so. You will probably remember these stories and hopefully tell someone else about what you have learned. Every individual is important in this process.
But more important I think that people in power often don’t understand what the issues are because they haven’t seen it through the eyes of the people being affected. So it is my belief that it is our job to put the ‘P’eople back in Power persuading people in organisations to listen carefully before they act. They need to empathise. Words on a page isn’t going to be enough!
In my experience, the most powerful asset that any institution has is its customers, its clients or its beneficiaries – people. You would think that listening to them, trusting their experience, having them on side would be the responsible and the accountable thing to do!
But, many organisations in all sectors, go to great lengths to ensure that this power isn’t realised. I would go as far as to say they are institutionally defensive. When people, however they are labelled, aren’t listened to and their experience trusted, they become disaffected; they learn not to trust an organisation and the people who run it, the organisation loses its legitimacy and all possibility of learning how to make what they do better a better fit to the needs of the people they provide for.
In the words of Barack Obama: ‘If we hope to meet the moral text of our times, then I think we are going to have to talk more about the empathy deficit. The ability to put ourselves in somebody else’ shoes, to see the world through somebody else’s eyes’.
THE PEOPLE ARE RISING. BE BRAVE. MAKE THEIR AGENDA YOURS AND WORK TOGETHER. YOU WON’T BE DISAPPOINTED
First published on 5 August 2020 by Betterway Network
READ ABOUT VOICE AS VALUE HERE
READ ABOUT ME HERE
What is Fixers? (produced by Fixers 2014)
The Fixers Impact Framework created real time (read more HERE )