Today is #rarediseaseday
The word ‘rare’ is somewhat misleading though, as roughly 1 in 3 of us ( and more as we age) suffer from conditions and health problems that are “Individually rare, collectively common”.
Many of these are not so much rare, but complex, and complex in a way that most current medicine (and large parts of the NHS) is still not set up to recognise and treat.
This makes identifying, recording and sharing our experiences and symptoms difficult, and accessing effective treatment almost impossible. For many, it’s frustrating and distressing, for some it can be a death sentence. Missed diagnoses and mistakes currently cost the NHS over £1.5 billion annually
In order to get help for my rare disorder, I not only had to research what might be going on medically, but also how this had come to be missed by doctors and specialists for decades, despite the signs being obvious looking back. It was most certainly not ‘all in my head’!
Using this research and experience, and working with medical experts, I have built a pilot tool to help everyone identify understand and communicate their health issues. It’s a service rather than an app – though it might become one in the future.
It’s early stages, we are a project for now, yet we may become a company or a funded organisation – we are open to what will work best, and that isn’t quite known yet.
I can however confirm that the feedback so far has been hugely positive, and we are increasingly seeing the huge unmet need for better ways of understanding our health.
Medicine is changing and more attention is being paid to unusual or complex cases, yet progress will just not be possible without detailed records of a full range of symptoms that both patients and doctors alike can use with confidence.
It is also critical that ALL patients can effectively report symptoms for themselves. Otherwise, how can we know that healthcare is working?
The video below helps outline the need for new tools, new approaches, and support for those who need it.
To ensure this project’s success: that it will be easy to deliver, work for everyone and be ‘good help’, I now need to learn from other people’s experience.
I am now looking for people who are based in the UK to interview, and who potentially might like to take part in at an early stage and be one of our pilot users .
Please do consider doing sharing your story with me, and sharing this with anyone else who you think might benefit. The form below is just for you to get in touch- we will send you full consent and sign up forms before you take part.
There’s also more information on our health page , however do let me know if you have any questions or need more details before you decide.
Thank you, and wishing you good health!