Creating A Social Enterprise With A Chronic Illness – The Story Of Spoonie Survival Kits

As I say goodbye to Spoonie Survival Kits, it felt only right to reflect on how the heck we even got here. Indulge me while I tell you the story, will you?

The Background

2014 Pippa really wasn’t thriving. On the outside I was trying to live my best life and enjoy being a student, but inside I was reeling from finally, finally being diagnosed with a chronic illness – a diagnosis that had raised more questions than it had answered. I had absolutely no idea what the future would hold. It was a struggle to get through each day, not only physically from the toll of ME/CFS symptoms, but mentally too. For a long time, I felt completely dispensable. I’d lost my sense of purpose, and I’d definitely lost my sparkle.

I can still remember the exact moment that the concept of Spoonie Survival Kits came to me. A few months after my diagnosis, full of listening and learning, I’d begun mulling over what I could do to raise some much-needed money for ME/CFS charities. I obviously couldn’t do any sponsored walks or runs or anything that involved physical activity beyond the mammoth remit of putting the kettle on, and I wanted to do something a bit different to the usual (albeit incredibly beneficial) care package schemes that are popular in the chronic illness community. I wanted to do something where I could simultaneously raise money for deserving causes, spread a bit of cheer, and ideally not completely destroy myself in the process.

The Concept

It was actually while I was shuffling around my student bedroom and preparing to go for a little lie-down when the words ‘Spoonie Survival Kits’ popped into my mind. They came out of absolutely nowhere, physically causing me to halt mid-step. I had no idea what a Spoonie Survival Kit could possibly be or where this phrase could have come from, but it was one of those precious moments where you just know in your gut that your mind has found the idea it was searching for.

I tried in vain to still go for my lie-down, but my mind was far too busy to achieve any beneficial rest. Instead, I turned my attention to scribbling down my thoughts and trying to figure out what the heck a Spoonie Survival Kit could actually be, checking it wasn’t already A Thing, thinking about where I could find the money to get the ball rolling, and how on Earth I could incorporate a fundraising element into all of this.

The Launch

selfie of younger pippa holding up first red christmas kit
First Year Of Christmas Kits (2015)

I sat with the idea for a few more months, discussing it with my mum and a few close friends, before I had a plan of action that was ready to launch. We would have a GoFundMe page where people could donate money to cover the costs of the project, then I would create and sell my ‘little bags of happiness’ on Etsy, with a high percentage of sales income donated to charity and the remaining pennies put back into the project.

Luckily I had a small online following at the time, and initially sharing my idea and launching the page was a really exciting moment. Within an hour of the pages going live another chronically ill blogger immediately decided to launch *their* project, using the exact name, images and wording as mine – what a funny coincidence, hey? – but other than that I was thrilled to bits with the response from the community.

Initially we made twenty little bags full of treats and goodies designed to appeal to people with chronic illnesses, raising money for Action For M.E. Back then I had no real idea of whether this was something that would continue into the future, but after seeing how speedily those first Kits sold and the positive response, I knew we were onto something. Over the next couple of years we developed hundreds of unique Kits, setting ourselves fundraising targets for a whole range of charities which we would hit and donate before moving on to our next chosen cause.

The Response

five women stood up at house of commons reception, arms around each other and smiling at camera
Action For ME House Of Commons Reception (2016)

By 2017, we’d sent Kits all over the world and raised thousands of pounds for charity. I’d been short-listed for Yorkshire Women Of Achievement’s Jane Tomlinson Woman Of Courage Award, and I’d even been invited by Action For M.E. to attend their five-year plan reception at the House Of Commons. It was such a magical time and I was brimming with ideas… but alas, I simply didn’t have the health and wellbeing to keep on going and keep up with demands by operating the way we had been.

A quiet few months with a lot of hard work behind the scenes passed by, but by October that year, we were able to relaunch as a much more established social enterprise, with a line of official Spoonie Survival Kits and various other bespoke accessories. Things became much easier to manage day-to-day, and it gave me some more scope to do something that felt really important to me – offer accessible volunteering opportunities for other chronically ill people who feel the way I once did.

Over the years we’ve worked with talented crafters who’ve produced items for the Kits, writers who’ve created content for our blog and social media, small business owners who we’ve purchased from, administrators who’ve helped with behind-the-scenes shenanigans, and we commissioned a chronically ill person to design and maintain our website too. Of everything that’s come from Spoonie Survival Kits, being able to offer flexible work experience and give references for young chronically ill people who might otherwise have not had the opportunity to access these things is something I feel really proud of.

The Initiatives

pippa stood outdoors wearing a red jumper, holding up a blue paperback copy of dear chronic illness - our charity book
Dear Chronic Illness (Charity Book) Release (2018)

Another huge thing we were quietly working on around this time came to fruition in June 2018, when we released our charity book, Dear Chronic Illness. It was entirely due to a random online encounter and act of kindness from Leesa Wallace of Wallace Publishing that our book even happened, and it still makes me all warm and glowy just to think about. I’ll never, ever forget what Leesa did for us, and I learned a huge deal about how much a difference the seemingly smallest gestures can lead to. Again, we were able to feature 16 chronically ill writers in the book and offer a platform for the stories that too often go unheard.

On the topic of warm-and-glowy moments, it feels only right that I mention The Duveen Trust here. A former grant-providing organisation for young people, The Duveen Trust were the only organisation we were ever eligible to receive financial support from. I pitched for a grant twice: once in 2016 to sustain and upscale SSK and once in 2018 to help us produce the following year’s iconic Spoonie Advent Calendars. In both cases we were successful, making us the recipients of one of the largest grants the Trust has ever provided. The former team and trustees have had many a heartfelt thank you (and bombardment of images of the products they enabled us to create!) from me over the years but if any of them happen to read this post, I want to say one more sincere thank you for believing in me when I needed it more than ever.

The Thank Yous

Finally, before I reveal Spoonie Survival Kits’ grand fundraising total, there are some more sincere thank yous I need to say. It took a literal spreadsheet for Aysha (our fab social media volunteer) and I to strategise how to express them all on social media so *please* go and read those posts and show them some love. It just goes to show how lucky we’ve been to have so many wonderful people supporting our work!

Thank You to the following Small Businesses and Social Enterprises:

Bear Hugs Gifts, Jayne Tapp Design, Stickman Communications, Actively Autoimmune, Spoonie Village, Little Pencil Design, Chronically Divine, Ananda Foods, Teapigs, Cocoa Libre, Pzizz and Ancient Wisdom, Project Parent, Cards for Bravery, Mama & Munchkin, Chronic Illness Bloggers, Standard Issue UK and Lacuna Voices primarily for helping us fill our Kits with gorgeous products and spreading the work about our work, as well as your ongoing support.

Thank You to the following Crafters, Bloggers and Website Contributors:

Katherine Stainer, Aimee Finlay, Emma Renshaw, Abigail Carter, Louise Shepherd, Zoe Collins, Hannah Goode, Fern Adams and Bryony Moss. Knowing that you’ve used your valuable time and energy to support our cause really does mean so much to me.

Thank to the following Packaging and Branding Suppliers:

Lauren Ayres (Graphic Designer), JPC Design, DavPack, Pinders Sheffield, Laser Cut Delights and Boomf. Each and every one of you were utterly essential at different stages of our growth and process. Thank you for the partnerships, charitable discounts, and words of encouragement.

Thank you to the individual supporters:

 I wish I could thank each and every person who has shown their support for SSK over the years, and I hope you know how grateful I am. To Kate Stanforth, Faye Savory, Helen Stewart-Dempster, Natasha Lipman, Naomi Barrow, Leah Oates, Katherine Stainer, Jeannine Wrayno, Kate Elliott and Charlotte Thompson in particular, thank you from the bottom of my heart for championing me and my goals.

Thank you to the Core Volunteers:

 To Lauren Ayres, thank you for creating the most beautiful graphics and branding before I even knew just how essential they would be, and for playing such an important role in the early days of SSK. To Nikki Vaughan, thank you for all your help behind the scenes alongside creating your own mini empire, and thank you for allowing SSK to benefit from that empire too. To Aysha Agovich-Lee, thank you for stepping in and being such a social media queen, decoding my very abstract emails and turning them into beautiful creations to share online. Each of you deserve all the success in the world.

Thank you to YOU:

If you happen to be reading this post right now, the chances are you’re one of the people who’ve supported and championed me online over the past few years… and in doing so, you’ve helped SSK reach and engage audiences far beyond only my own. Thank you so much for your ongoing support – none of this would be possible without you.

And finally, thank you to my parents.

I’ve spoken before about how the very best thing my Mum and Dad do for me is not only tolerate my wacky ideas, but actively encourage them. Spoonie Survival Kits was probably my first real example of this, and I can categorically say that none of this would even have existed without my Mum’s practical help and support over the last six years. I can’t even begin to calculate just how much time and energy she’s put into hand-packaging your orders and sending them out into the world, how many full days she’s spent sat on the floor with me completely engulfed in stock and organza bags, how many hours she’s spent sewing heat warmer bags and hand-crafting Spoonie Necklaces long after I’ve had to call it a day and go and rest… all while refusing to accept anything in return. There isn’t a thank you big enough in the world for everything you’ve given to help evolve poorly Past Pippa’s random idea into one of the proudest achievements of my life.

Now then. Time for a grand total I reckon.

I am so thrilled to share that since 2014…

Spoonie Survival Kits has raised a total of £8,382.57 for 15 different causes!

Puts that original £500 target into perspective, hey? 😀

The Future

pippa stood outdoors holding up red spoonie christmas eve box and smiling
Spoonie Christmas Eve Boxes (2020)

Looking back to where I was when Spoonie Survival Kits first began compared to where I am now makes me feel more than a little emotional. In many ways SSK was my act of defiance, my way of showing I still had so much to give in a world that made (and continues to make) chronically ill people feel worthless. I don’t think Past Pippa would have believed me if I’d told her that things were going to work out better than she thought, that I’d had the opportunities I’ve had and that much of the work I do now revolves around empowering and opening up opportunities for other people who feel the way I once did… the thing that drove me to create Spoonie Survival Kits in the first place. Goodness me.

SSK was the start of everything in my eyes, and it hurts to say goodbye to this chapter of my life. I don’t think it’s even fully sunken in yet. However, I’ll never not be grateful for this adventure and for everything I’ve learned from the experience. It’s something I’ll cherish forever, even as I turn my eyes to the future that it helped to open up for me. And let it be known… this is not the end of my fundraising plans.

Thank you, Spoonie Survival Kits, and thank you everybody who supported this initiative along the way. You changed my life forever.


Pippa x

Where To Next?

2 Responses

  1. dear Pippa
    I have learnt so much from your blog. being a disabled person, I learn something new every day. your blog has been so amazing.
    thank you for making me a part of this journey by writing this post.. surely I was quite late in finding your blog 🙂 I love everything you do. all the best 🙂
    love and best wishes from India xx

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