Happy Birthday, Lucy!

Dr. Lucy Wills, facing left seated at a desk, looking with her right eye down a microscope. CC BY 3.0

Today, the Google homepage ‘doodle’ features the renowned haematologist Lucy Wills,  born 131 years ago into a family of prominent, lawyers, scientists, engineers and geologists. It’s great to see her getting global recognition for her groundbreaking work, both through the doodle and the many many news reports

Not only is she my namesake, she is also my second cousin once removed, so I have known about her for a long time: my cousin and I began her Wikipedia page.

Lucy’s research has been important to me for many reasons.  Her work on folates and other nutritional issues lead me to investigate the root cause of health issues that have been running through my branch of the family for generations.

I have great admiration for mainstream medicine, but until I found the right diagnoses for myself, my health conditions were generally treated as if they were psychiatric in origin or purely a response to stress. While stress plays a huge role, the mind body divide is proving to be much less definite than previously assumed.

Indicators such as cognitive function and social resilience are very rarely measured in general medicine yet such symptoms can be just as indicative of underlying health issues as ‘hard’ measurements like blood pressure or heart rate – if not more so.

Our mental health is much more closely linked to our physical health: and symptoms of both should be considered together.

Lucy saw health in context, looking not just at what she saw in the microscope, but at social, cultural and economic factors that affect us, affect what we eat, and what our bodies might need to function fully. I’m looking not just at individual health and wellbeing, but at what our healthcare systems ans services need to flourish.

The NHS is world leading in many aspects of medicine, but autoimmune conditions and complex health disorders are still relatively poorly understood, and under-diagnosed. Late diagnosis is all too common. Across many other fields of medicine there is a lack of general understanding of generalised or sub-acute symptoms, and of a joined-up approach.

When health symptoms are found to have been wrongly ascribed, there is very little opportunity for most doctors and consultants to pass this information back into the system fully, because it just doesn’t fit in the right boxes yet.

Co-morbidities cost the NHS an estimated £4.3 bn annually, and yet funding for new initiatives is limited. Strengthening observational healthcare would be a very good place to start. Preventative care could be improved without having to spend hundreds of thousands of pounds upfront on research programs for individual conditions. That would come later.

The way that healthcare services are being delivered is evolving, we now have the opportunity to involve patients, doctors and nurses in building better ‘patient pathways’ and involving communities too.

Not everyone is able to research their own health and advocate for themselves in the ways that I have. I believe that everyone should be encouraged and supported to participate more in their health and in their well being, and to report
Patient-reported outcomes. It’s what Nesta have named ‘People powered Health’, and I am all for it.

This is why I have founded Globefox Health, to help people better identify, track and report what they are experiencing,  and to give them the support that they need.

We have a initial focus on supporting people with Ehlers Danlos Syndrome, and Hypermobility, partly as these conditions are so complex, but also as they can cause cognitive issues that can make using existing health services very difficult, or even impossible to use.

We are not diagnosing, but applying design and key insights to people’s data, to create dashboards, summaries that will help doctors and the people who look after us spend less time gathering this information and more time interpreting it.

I hope that the information that we gather will not only help people access the care and help they need but also help ensure this new generation of Healthcare will leave no condition or individual behind.

So happy Birthday, Lucy Wills, It’s an honour to be walking in your footsteps!