We’re back! Welcome to the brand new Spoonie Survival Kits!

Well this is exciting, isn’t it…

Hey everyone! We’re back! How’ve you been?!

It’s been a long 8 months of reforming Spoonie Survival Kits, and we’ve been a little quiet whilst that’s been going on. However, I’m so excited to announce that WE ARE BACK and ready to launch the first batch of our brand new kits, as a brand new social enterprise. If you’ve supported us for a while, you’ll be aware of how we used to operate and understand just how crucial it was to adapt SSK in the way that we have. SO, keep on reading to find out more about what’s been happening, some of the necessary changes we’ve made, and how things are going to be from now on…

Changes To The Kits

Back in the day, we offered a range of differently sized kits in various colours and all containing different items. There were two main issues that we encountered with this: firstly that creating the kits was eating up hours and hours of time that we simply did not have, and secondly that there was no guarantee that the kit a person received would be suitable or relevant for their own medical condition or situation (unless they had notified us beforehand).

Therefore, we’ve created a new range of kits that each focus on a specific symptom of chronic illness, and the first kits we will be launching are our Chronic Fatigue Spoonie Survival Kit and our Chronic Pain Spoonie Survival Kit. Yay! Each Chronic Fatigue Kit, for example, will contain the same items (with some variations in styles/colours of the items within it), and we hope to create loads of different types going forwards. Our next two kits to be released, which we’re currently working on, will be our Insomnia Spoonie Survival Kit and our Migraine Spoonie Survival Kit. Not only does this way of doing things make it easier to cope with our growing demand, it also means that the kit you choose is much more likely to be suitable and tailored for your own situation. Everybody wins! Our new kits are also of a much higher quality than our previous kits: they contain more substantial items, and I know I’m biased, but I think they’re absolutely lovely.

The other factor that we had a good long think about was whether to disclose what was in the kits prior to people purchasing them. As you may know, in the past we have operated on a ‘surprise’ basis: we kept the contents of the kits a secret, so that recipients had the excitement of unwrapping a present upon receiving them. The feedback we got on this was about an 80:20 split – the majority of our supporters liked this way of doing things, but some said they would (understandably) rather know what they were spending their money on beforehand. SO, here’s what we’re doing to do: the contents of kits are going to stay a secret as before, however if you would prefer to know what you were purchasing, drop me an email before you buy. We’ll send you the ‘contents card’ PDF included in our kits, so that you have more of an idea of what’s inside them. Sound good? I hope so!

Our final thing to say about the kits makes me a little bit sad: no Christmas Kits this year, I’m afraid. We’ve simply run out of time to organise them. However, they’ll be back and extra fabulous next year, and we’re hoping to do at least something through SSK to celebrate Christmas time. Keep an eye on our social media… I’m feeling a giveaway at some point!

Changes To Funding

Next up, let’s talk about our financial situation. In the past, we have operated as a non-profit fundraising project. Of our sales money from the kits, 75% was donated to our current chosen charity/cause, and 25% went back into sustaining the project. The issue here was that as we have no regular source of income, and I’m not well enough to fundraise regularly enough for this to be a viable source of income, we weren’t able to make ends meet in terms of the costs of running the project. Sigh.

Therefore, we are taking the positive step of evolving from a non-profit into a social enterprise. From here on, 50% of our sales money will be donated to our current cause, which will be listed on our social media. At the time of writing, our current charity is still Ehlers Danlos Support UK, who we are roughly halfway to raising our target of £500 for. The remaining 50% from sales will be used to cover the numerous costs of running SSK (such as administration fees including domain names and web maintenance, as well as Etsy and bank fees), and developing more new kits. If there is any money remaining after these costs, this will be put towards creating paid opportunities for those with chronic illnesses. Creating flexible employment opportunities of this nature is something very important to me, and I really hope this is something we can make happen in the future.

We will still gladly accept donations and fundraising on our behalf, and honestly, you have no idea just how much I would appreciate this; any money donated in this way will go directly into sustaining the costs of running the project. If you’d like our donation details, please contact me so I can pass these on, along with my eternal gratitude.

Finally, the only exception to all of the above is our postage: we ship worldwide, and you can view our postage costs for various locations on our Etsy page. These costs can vary depending on the weight and size of the item you’re purchasing, and postage will always be at face value: the price you pay for postage is exactly what it costs us to send them, plus the packaging material. Our postage costs for outside the UK may seem costly, but this simply reflects the upgrade in the quality of the kits’ contents: we have some really lovely individual items, which have upped the weight, and hence the postage costs, of the kits. Charging postage at face value allows us to put as much money as possible towards our chosen causes and also back into the project.

Changes To How We Run

As I’m sure you’ll have noticed by now, the vast majority of the old SSK wasn’t sustainable, and how we ran the project was no exception to this. I was working on things at every free moment I had in between this and that, and yet the workload never seemed to go down. The way we were running just wasn’t time and energy effective.

HOWEVER. I have a plan. As some of you know, I’ve had a bit of a change in circumstances lately and to say life is hectic right now would be a bit of an understatement. Therefore, instead of flapping about and trying to do bits and bobs here and there, I’ll be utilising one day a week entirely for SSK shenanigans: this will most likely be a weekend day, and I’ll be doing admin, processing orders and all the other palavers that come with running a project like this. Therefore, I really do appreciate your patience when it comes to replying to messages. In the past, the vast majority of our supporters have been very accepting and accommodating of our sometimes delayed response times, and I hope with everything in me that you guys understand the situation and know where I’m coming from.

We’re also going to have a set postage day: again, sending my dad off to the Post Office multiple times a week (with stacks of pretty sparkly packages that earned him an abundance of judgemental looks from the staff…) just wasn’t time-effective. This can mean that you may either get your kit super quickly, or there may be a slight delay. For example, if (hypothetically) Friday was our processing day and Monday was our shipping day, and you ordered a kit on a Thursday, you might have it by the next Wednesday. However, if you ordered a kit on a Saturday and just missed the processing day, it would be an additional week before your kit was dispatched. Again, I really hope you understand and empathise with why this has to be the case at the moment: I will strive to do all I can to get every order prepared as quickly as humanly possible.

The final thing I want to say about how we will run going forwards is a polite ask to those who know me personally. If you have a question or query related to Spoonie Survival Kits, I would really appreciate it if it was directed towards SSK, rather than my own contact details or social media. I’m juggling quite a workload at the moment and whilst I genuinely adore everything I’m doing, my rest and leisure time away from work does have to be just that. And believe me, you don’t want to cross me when I’m feeling poorly and overwhelmed. Just imagine a passive-aggressive ogre in a onesie: it does not make for a pretty sight.


If you’ve read this far, I salute you. I do hope you’ll bear with me just a little longer whilst I show my love and appreciation to those who have helped make this reform even a possibility, whilst keeping me alive and in one-piece (just about). Firstly to my long-time volunteer Lauren Ayres for her commitment to SSK in spite of her own challenges, and to Nikki Gittins who I’m delighted to have back on board again soon. To our ongoing cohort of volunteer crafters, Lucy, Katherine, Kristeen and Janine: thank you to all of you for using your talents to support our work.

To James Cooper of JPC-Design, thank you for designing a cracking new website for us and for making the process so painless for me. To BearHugs Gifts, thank you for donating one of the items in our Chronic Fatigue Kits and for generally just existing as the adorable enterprise you are. To The Duveen Trust, thank you for seeing potential in us right from the beginning. To Leesa Wallace, thank you for providing one of the best opportunities of my life so far (which I can’t wait to reveal very soon…). To Pinders Printing Services in Sheffield, thank you for showing your support. You’re ace.

To Carol and Ian Stacey (aka The Parents), thank you for providing the necessary legwork, the funds to get me started, and putting up with me becoming something of an angst-y dictator from the confines of my bedroom. To Helen Dempster-Stewart for her endless support and kindness from afar, and to Kate Stanforth for always thinking of us, you two are just brilliant. To Louise from ME Support and Dominique from InvisiYouth, your ongoing enthusiasm means the world to me. To Charlotte Thompson and Faye Savory, thank you for the moral support and multiple cups of tea: a cup of tea always solves everything.

And finally, to you fabulous, fabulous individuals who have donated, fundraised, purchased past kits, followed and liked our social media, spread the word about the project, and even took time out of your day to send us a thoughtful message: a heartfelt thank you. None of what we’ve achieved so far would have been possible if it hadn’t been for the support of the chronic illness community, and the kindness and generosity you’ve shown us is what motivates me to keep going and paying it forward, every single day. You really have changed my life, and I hope you know how much I appreciate you. You’re just wonderful. HUGS FOR EVERYBODY.


Now, this is the really awkward bit where I direct you to the kits and hold my breath whilst I wait and see what happens next. I cannot begin to tell you just how much time and hard work has gone into these new kits, and I really hope you guys like them as much as I do. So… here’s to the start of many more adventures for Spoonie Survival Kits. Follow this link to shop now. EEK.

Love and hugs,

Pippa x

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