Our Story

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After clocking up years as an inpatient over my two decades of chronic illness, I thought I had it nailed. I'd always had a fairly good grip of my medical history and the hospital bag was tucked away, ready-packed for the next emergency admission. It's full of so much medical gubbins that I can't lift it, but thanks to my long-suffering friends and family I always had someone nearby to do that for me as they hopped up into the ambulance or followed closely behind. When hospital guidelines changed in 2020 to help contain the pandemic, all my carefully-honed routines and safety nets were suddenly obsolete.

So I began the long and extraordinarily complicated process of attempting to distil my medical history into a 'cheat-sheet' that would communicate my needs if I was unable to. The prospect of having no support was alarming, and I couldn't find anything on the market that could handle the detail required by people with multiple chronic illnesses and physical disabilities.

I remembered the Health Passport used by people with learning difficulties, like my late foster brother, Andrew. He had the biggest smile of anyone I have ever known but a very limited vocabulary, and there are some great booklets designed to help people like Andy alert staff to their needs and preferences. But, as is often the way, the 'medical history' section is tiny in most of them. I couldn't fit the full names of my conditions in some, let alone the details of the consultants who have bravely shouldered the responsibility for taming them.

So I set about making my own. Pain, fatigue, migraines, and brain-fog meant that it took me almost a year to put together something useful that contained everything I needed, and when I shared it with friends they clamoured to know how I'd done it and if I would make one for them.

I realised just how many people shared my need for a simple record of their most important information, that was customisable enough to work for multiple co-morbidities and fluctuating symptoms or mobility. So I used the extensive notes I had made for my own Chronic Health & Care Passport to create one that would work for others.

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With a little help and a lot of feedback, I am proud to be able to make My Chronic Health & Care Passport available for you to download and use in your own care management.

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Several things were important to us when bringing this to the 'spoonie' community:

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1) That My Chronic Health  Care Passport (MCHCP) be a means of empowering chronically ill and disabled people by helping them to articulate their needs and preferences.

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2) That it should be flexible and customisable but also easily accessible. It should be able to be completed by patients themselves, or their carers or advocates. To achieve this we have used tick boxes, prompts, and lists, and aim to have versions that can be typed out (also suitable for emailing to new healthcare providers), Large Print, and a dyslexia-friendly and more economical minimalist/monochrome version that is easier to read, cheaper to print, and easier to photocopy.

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3) That the main, downloadable version should always be free to every patient who needs it. This was vital (despite protestations from people who had seen how much work it took and felt I should be compensated for that time and precious energy). Disabled people are already priced-out of so much access to healthcare, supplements, and the aids they need to live well, and I will not add to that burden or seek to profit from my disabled peers. My Chronic Health & Care Passport is free for use by any patient, anywhere in the world. It can also be printed out or photocopied by Doctors Surgeries, Social Services, Support Groups, Hospices, and any other healthcare provider who feels it would be helpful to the people in their care, providing they supply it to their patients free of charge. (Commercial uses, such as printing them to sell or using the pages for commercial gain are strictly prohibited.)
 

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In response to a demand that arose during our testing stage with chronically ill patients, I have added donation buttons so that people who would like to contribute to our outreach services can do so. With help from Redvark Publishing Ltd this will help us to distribute printed, ready-to-use, copies of the CHCP to charities and healthcare providers for patients who would struggle to access them any other way. Any money that is not used for this purpose (for example, if my own poor health means I have to step back) will be donated to the Open Medical Foundation, whose vital biomedical research is the promise of light to people with M.E/CFS after far too long in impenetrable darkness. Long Covid threatens to swell the number of people living with chronic illnesses across the world, and this is my contribution to the fight back.

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Kate

Creator & Textbox Wrangler-in-Chief @ My Chronic Health & Care Passport