It all began with a girl called Katie, who was 14 and full of self-doubt. She was great at being unkind to herself, and not so great at being able to share her thoughts with her friends or family or hearing nice things about herself.
Katie started to develop ways to control her anxiety, and this included restricting what she was eating. Over a short time, restricting food turned into fear of food and she was in the grips of Anorexia Nervosa. Katie needed help and so did her family.
Although Katie wouldn’t say so herself, she’s a pretty determined young person.
She named her eating disorder Edwardine and likened her to a Harry Potter Dementor. Katie did get really very poorly, and then she got better. She will always need to manage Edwardine, and wanted to do something to help others who have similar experiences. Katie is very much part of the inspiration for Wayfinder and our drive to provide ways in which young people and those who care for them can be supported safely.
Katie is teaching herself piano and wants to pursue a career in therapy. She is unsure of what type yet, but we know that whatever she does we will all be proud of her.
Katie's mum, Sarah had worked with public organisations most of her career. She possessed a passion for helping people to make services better than they thought were possible. When Sarah realised that Katie needed help she started to research how to get a referral to the right place. She had experience of the way in which health services were delivered but still, finding a way to help Katie was hard.
Sarah found that the internet is full of useful information scattered randomly, it can be more luck than judgement to find the right information at the right time, and sometimes that information is too confusing to make sense of. She didn’t always feel listened to. Knowing the right things to say to the right people determined what decisions would be made about Katie's treatment. Knowing that made Sarah anxious. With so many young people like Katie in ‘The System’, how could Sarah be heard by the right people, at the right time?
Sarah felt like she was lost in a labyrinth of services and failing her daughter when time was against them.
When Katie was seen by an eating disorder team, the family were full of hope and trust. The service professionals were amazing, and they explained what needed to happen and when, to help Katie. It was going to be a long road, and the main carers would be Sarah and her husband, Ian. The pressure was on parents to provide Katie with the full time care she needed to recover.
Juggling work and full-time care was hard. Something had to give. It seemed like they were the only people going through this experience, that none of their friends or family understood, and that they were doing a poor job. They had nothing to compare themselves to. Compromised by emotion, overwhelmed by the task at hand and coping with a completely new way of living, Sarah and Ian felt isolated, useless, and alone.
But they were doing a good job, and although the road wasn’t a straight one, and some days seemed terrible and dark, there were moments of hope and the odd thing to be happy about. Eventually, Sarah and Ian were offered the support of someone who had lived in their shoes. Someone who knew what they were experiencing. Someone who could listen, and offer advice, and be honest. It was a lifeline; they weren’t alone anymore.
As the weeks went on life changed again. Katie was now physically ill and even just being at home was something that needed careful management. It became important to make a note of the journey, from food eaten, or not, to emotions experienced. From things to look forward to as motivation, to things to avoid that weren’t helpful. Notes became journals, and they were useful for all sorts of things, from making therapy sessions more informed, to illustrating a journey through self-help. The unimaginably torrid days, the great days. They were part of the journey, and recording them, made them seem more bearable and normal. Even when Katie was really poorly.
Doing something about it
Every person with an eating disorder has a different pattern, a different story to tell. For Katie, after months of hardly managing 1 meal a day, just like that, she started to eat again. She ate and she ate, then she didn’t, and then she did. When she had eaten every meal for a little while, she sat down with her mum one day when the Christmas tree was twinkling but the presents had long been opened.
Together they wrote a plan, of what they would have liked as support if they had to go through their journey again. A plan to make accessing the right help clearer. A plan to make it easier and safer to communicate with those who have lived experiences, when days seem dark. A plan to enable journaling to be precisely what is needed and therapeutic to do, and available to support therapy.
A plan to make interacting with mental health services better than they ever thought it could be.
Connecting with Mike/Mondrem
Sarah and Mike met in a meeting somewhere in London more years ago than they care to remember. They had a few things in common and pretty soon they were working together on projects to help people create better public services. Time went by, and Mike and Sarah kept in touch from time to time.
In December 2019, before the Christmas tree was twinkling and Katie was eating well, Sarah contacted Mike. They spoke about Kate and Katie and about how mental health challenges aren’t logical. They missed working with each other. They agreed to meet in the new year, just for a chat. See what ideas might come of that.
By the time that meeting came around, Katie was eating and a plan to make accessing and navigating eating disorder services better was in draft. Sarah showed Mike what she and Kate had built. Mike shared some of his experience too. Soon they got to developing the idea that they could build something to support carers of any patient receiving mental health support.
How it developed
Mike and Sarah got to work building on the draft plan they had as a starting block. And pretty soon, more challenges were identified. More services where similar problems existed. The more people they spoke to, the more it seemed that their plan had the potential to help many more people than they first imagined.
Spurred on by support, innovation and determination Mike and Sarah set about incorporating a Community Interest Company which would provide platforms for safe and governed peer support, navigation through health services and bespoke journaling to aid therapeutic recovery.
Where we are now
Since then, Wayfinder Connect has been developed. Serving the first of the three objectives of the company, Connect is a platform which allows safely governed proactive and on demand peer support relationships to thrive and be maintained in a way in which wasn’t possible before. As a thank you, Sarah and Mike offered this platform to the eating disorder team who helped Katie for free. And it is live in other settings too. If you want to know more about Wayfinder Connect, and how it can be an addition to your carer services click here.
Wayfinder are also in the process of developing further platforms and are seeking funding to support this activity. If you would like to know more about Wayfinder products in development click here.
We are always looking to connect. If you think your company could benefit from Mondrem and Wayfinder or would like to know more about getting involved in our mission, contact us: