“The patient is always right”

On Monday 13th March several of the student panel members were privileged to have the opportunity to attend the annual King’s College London Halliburton lecture, given by Professor Moxham. Professor Moxham is known for his work involving respiratory physiology, including respiratory muscle weakness, neural respiratory drive, breathlessness, ventilatory failure, non-invasive ventilation, and pulmonary rehabilitation. The lecture we attended on Monday, titled, “Physiology to improve Patient Care,” centralised around the idea that through bed-side research, breathlessness has not only been better understood, but will be further understood in the future.

The lecture began with an introduction by the Professor, where he told us that his interest in physiology arose during his work with RF Armstrong. He had been continuously measuring the cardiac output and blood oxygen levels by the bed-side and he told us he had, “found this very fascinating”. Several years later, he began his work in the field of respiratory muscle with Professor Richard Edwards, described to us as “an inspirational man.” He also talked about his past trip to Montreal where people examined changes in the EMG power spectrum and this allowed him to learn how to assess diaphragm strength.

This led to his work in trying to discover, “How to measure respiratory muscle weakness?” And he informed us that it is bed-side research which is essential to understanding this. He reported to us that the methods currently available for doing this are assessing maximum mouth pressure and oesophageal pressure. Professor Moxham explained that it was essential to find non-invasive ways to do this because in the instances where patients are unable to express their symptoms of breathlessness, we must rely on the medical equipment available to us, to allow us to understand the condition of the patients and help these patients.

He later presented to us what seemed to be the key theme of the lecture. “Breathlessness is the drive, and the drive is breathlessness.” At this point, the majority of the panel members struggled to understand this, but after the lecture Vicky explained to us that Breathlessness is the symptom where a patient is struggling to breathe, and drive is the “short term for neural respiratory drive, which is the traffic that the brain sends down to the breathing muscles (mainly the diaphragm, but also the intercostals and some other muscles) to tell them to contract.” She helped us understand that throughout the lecture, the Professor had explained that they key causes of this symptom of breathlessness are various diseases such as COPD, obesity and asthma. He concluded the lecture with the idea that when patients described breathlessness, it is not that it is not present if a doctor cannot see/measure it, the problem is that we have not discovered a way to measure the breathlessness, and hopefully through bed-side research the future doctors will understand that “the patient is always right” and that when they describe the symptom of ‘breathlessness,’ this is able to be seen with advanced medical equipment.

Although this was a challenging lecture for the student panel members to understand, it was both intriguing and enjoyable. We were introduced to a concept by Professor Moxham that we are all excited to further hear about in the future.

By Neta Fibeesh and Ma’ayan Dee, Student Advisory Panel members, JFS School (Year 11)

Maryam’s thoughts on our sickle cell focus group

On the 27th February, a handful of the student panel students, including myself, had the privilege of acting as ‘honorary researchers’ during a focus group for children with sickle cell disease and their families. For those of you who are slightly bewildered (don’t worry its nothing to be embarrassed of) ‘honorary researchers’ is the fancy way of saying: we helped out! In case you’re not sure, sickle cell disease essentially is a disease where people don’t produce enough red blood cells, and the ones that are produced can become ‘sickle’ shaped, blocking normal shaped red blood cells from passing through vessels. Such abnormality of the cells often results in tiredness, which as you can imagine isn’t fun…

Much to Vicky and Alan’s surprise, the day was Donuts low resrather mellow – with the exception of the hectic food run whereby the supposedly quick ‘2 minute’ wait ended up being 10, and the jerk chicken was too spicy leaving us running back and forth to the nearby food stalls for the last minute order of pork dumplings. However the pain of the biting cold was definitely nullified by the taste of warm cinnamon doughnuts.

… Anyways, while Vicky and Alan did all the grown up duties with the parents, Lily, Francesca, Abi, Reef and I had the tasks of getting Abi & Ekene low rescreative with our participants (drawing, writing etc) which produced masterpieces such as the spectacular depictions of Abi and Reef by our wonderful artist Ekene. Somehow drawing, writing and surveying concluded in a singReef & Ekene low res along of Carly Rae Jepsen’s ‘call me maybe’ thanks to Reef’s ukulele skills.

Aside from all this, we essentially wanted an insight as to how life like with sickle cell disease actually is, in order to comprehend fully the difficulties experienced by these families. This ended up being beneficial as we not only got a grasp of how it was to be a guardian of the children for a short time, but how they felt about having the disease. Thankfully, it also happened to be a delightful experience meeting all these lovely families. Not too bad at all for a first attempt at an event like this!

Spot Alan low resMaryam Waseem-Saeed, Burntwood School (Year 12)

A Student Panel member writes about our recent meeting

The first student advisory panel meeting of 2016 commenced with new arrivals from JFS and Harris Academy (Morden) at Harris Academy Crystal Palace. Our discussion was centered around disordered systems with presentations from researchers hailing from Italy and Serbia.

We were joined by Dr Pierpaolo Vivo, Barbara Bravi ,Silvia Bartolucci and Aleksandra Aloric from the Faculty of Natural & Mathematical Sciences at King’s College London. Each researcher presented their international journey through academia and explained their current research including the Random Matrix theory and mathematical modelling of the immune system.

We had the privilege of having individual discussions with the researchers and were able to ask questions to further understand disordered systems. Disordered systems refers to a system in which there are multiple components involved. It includes variables that need to interact, an aspect of “randomness” and collective coordination.

We learnt how disordered systems are relevant in group behaviour. To my surprise, an example of disordered systems in group behaviour is the awkward dance with a stranger when passing each other on the street. The surprises didn’t end there with the movement of a flock of birds being another example of disordered systems. In Rome a team of researchers recorded starling flocks every day for 2 years to investigate collective coordination. There is not an established leader in the flock of birds that causes the sudden change of direction which is the random aspect of system at play. The aim of this research is to understand what causes the birds to make a sudden change of direction. Using the data collected from the birds, the researchers created a 3D model that conducted model simulations. These simulations were used by the researchers to analyse in a hope to understand the change of direction.

Afterwards, we considered how disordered systems are relevant in life sciences. Bravi’s research outlines the simplification of complicated networks of biochemical reactions using approximations. Disordered systems also helps the interpretation and analysis of data via mathematical modelling.

To make the concept of disordered systems comprehensible and widely accessible to people, Aleksandra Aloric, Silvia Bartolucci, Barbara Bravi, Sari Nusier and Anne Odling-Smee created the educational game “Random walks with pirate and parrot“. This game is available on the Play Store and it consists of different levels from helping a pirate walk to find his boat to the biological “walk” of molecules occurring within the parrot’s body.

In conclusion, the meeting was exceptionally engaging as it evoked curiosity in me alongside fellow members of the student panel about the function of disordered systems and its unexpected presence in nature and society. After this meeting I will not be able to simply admire the beauty of flying birds in the sky without thinking about the science behind it.

Bilan Ali-Abdishire, Burntwood School (Year 12)