Lucy mc kay crdn 2016
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Lucy mc kay crdn 2016
- 1. Dare to Think Rare Dr Lucy McKay Founding Member of S4RD www.students4rarediseases.org@S4RareDiseases Students 4 Rare Diseases
- 10. 33 medical schools in the UK Almost 7000 medical student places each year A future generation of doctors who will #DareToThinkRare
- 12. www.students4rarediseases.org@S4RareDiseases Students 4 Rare Diseases Educational Coordinator ● Single point of access ● Keeping website and social media up to date ● Contacting medical schools relentlessly ● Liaising with patient groups and speakers ● Attending events ● Accessing funding for projects ● Organising the annual symposium Helping us reach all those future doctors in training & reminding them to #DareToThinkRare!
Editor's Notes
- Hello my name is Lucy McKay and I am a founding member of S4RD. We are a group of doctors who started trying to raise awareness of rare diseases amongst medical so students back in 2011 when we were medical students. However this is not how my interest in rare diseases began...
- Rare Diseases run in my family. I grew up in the MPS Society which my mum founded following my brother’s death from MPS II.
- Here are some interesting haircuts and also my friends Hendrick and Emily who had MPS III.
- Common things are common. Rare diseases barely featured on the curriculum and on the medical student shop floor you wouldn’t dare to mention a rare disease. This is for good purpose because after all common things are common but what we try to remind medical students is that rare diseases still exist. We all know that rare diseases are common if you lump them all together. But what we also have to take into account is most incident rates are population based. But you have to look at your sample! As soon as you select for those accessing healthcare the chances of coming across a rare disease increase. If you’re talking about childhood conditions this then increases again.
- I decided to make my two worlds meet. And four of my friends were happy to support me in the task of creating the first student society for Rare Diseases in the UK. Tis was the start of Barts and The London Society for Rare Diseases. We held evening lectures at our medical school given by specilaists clnicians, patient advocates and patients. We try to be clear that we don’t expect students to remember every detail about rare diseases but just to act as a counter-balance to the common things are common mantra. We find that it is the patient or parent who tends to reach the students most effectively. I am sure this will come as no surprise to you all. But to medical students who are grinding through a curriculum, jumping from exam to placement to essay...sometimes there is little opportunity to sit and listen to a real life story. And even if they dont go away and remember the exact pathophysiology of each disease they remember the stories of the individuals. It’s our hope that by exposing medical students to rare patients and their stories we will encourage future doctors to be compassionate and curious. Even if they know common thigns are indeed common.
- Attracting medical students from across the country. We realised that a model like the one at Barts and The London could be used in other medical schools. After all different medical schools are associated with hospitals specialising in different diseases. We gained interest from clinicians and patient groups alike who shared our vision. So we started a national committee for medical students wanting to raise awareness of rare diseases.
- With support from Genzyme’s PAL Award granted to the LSD Collaborative we became Students 4 Rare DIseases and were in a national newspaper on Rare Diseases Day 2014.
- Momentum
- This could be an organisation that has representatives in the X medical schools across the country. Reaching the Y number of medical students that graduate a year. Who on average will see Z number of patients a year for the rest of their career. With social media and a shiny webiste we aim to have new content about events, infograms about rare diseases, real patient stories to get our message across.
- Typical day in the life of a junior doctor. Our biggest obstacle. We need a single point of access. Education coordinator.
- This is a unique audience that isn’t being targeted systematically to think about rare diseases. What we needYear long grant for educational coordinator. Following the success soft from this pilot we are concentrating on ways of finding in the future