Jon: First of all, some introductions. My name is Jon Stamford. I am a person with Parkinson’s, diagnosed 12 years ago. It’s my pleasure today to interview Dr Jonathan Stamford, former head of the Neurotransmission Lab at the Royal London Hospital. I wonder if I could start by asking you, Dr Stamford, to tell us a little bit about your research.

Dr S: Certainly. My laboratory’s research was directed towards the monoamine systems of the brain – that’s dopamine, noradrenaline and serotonin – and the processes which govern their actions. I was particularly interested in the control of dopamine function in the basal ganglia, the area of the brain most strongly involved in Parkinson’s disease. We studied this with microelectrodes implanted into brain tissue.

Jon: And presumably the results obtained from these microelectrodes gave you some good insights into Parkinson’s disease?

Dr S: Yes and no. They revealed quite a lot of information about the area around the dopaminergic synapses in the striatum. We learnt a great deal about what caused dopamine release, how far the dopamine travelled beyond the synapse, how fast those processes were and how they could be modified by the drugs used to treat Parkinson’s. For instance L-dopa increases the amount of dopamine release for every action potential. Other compounds have the opposite effect. It’s all valuable information into how the brain behaves at its most simplified form.

Jon: You said “yes and no”.

Dr S: Yes, I meant that there were reservations. As I said, these kind of experiments are very helpful in elucidating the mechanisms of neurotransmission and finding mechanistic explanations for neurological phenomena. So they can provide insight into some of the biochemical changes in Parkinson’s. And that’s very helpful. But we also have to recognise that a piece of brain tissue in an organ bath is not the same thing as a person with Parkinson’s.

Jon: I agree. It often seems to me that scientists can lose touch with patients.

Dr S: Very much so. And I think it’s to their detriment. I enjoyed my research very much and we learnt some useful and meaningful things. But that same focus on the minutiae of neurotransmission and of Parkinson’s sometimes takes you away from the bigger picture. Those tiny little details in that synaptic soup of neurotransmitters ultimately doesn’t tell you much about Parkinson’s patients and their concerns and needs. It is perhaps the ultimate irony that the first person with Parkinson’s that I met was you.

Jon: Yes, I remember. I remember being diagnosed as well. The consultant was telling me all about these things that were going to change my life and you kept interjecting with inappropriate questions about dopamine.

Dr S: They were important to me. I was trying to find points of reference that I could understand. I knew about dopamine but I didn’t know much about tremors, stiffness and balance problems. I was simply trying to relate one to the other. To try and bring my world and my experience to bear on your world and your experience.

Jon: Well, with hindsight, I think you needed to listen more to me. It didn’t really matter whether you could relate my experience to your dopamine. I knew what I was feeling and it was quite difficult to translate that into language that had meaning for you as a scientist. So it’s not surprising that you were struggling to convey your science to me. And in a lot of ways it didn’t matter. My experience was genuine – it really didn’t matter whether you could relate it to dopamine or not. Things are real whether or not you can explain them.

Dr S: I think I was just trying to make sense of it all and to find ways in which my knowledge would be helpful. Ways in which it might cushion the blow of diagnosis.

Jon: …and did it?

Dr S: Not really but it did have one valuable side-effect. It made me aware of just how separate the worlds of science and patient experience are. It made me realise that your experience as the patient is vital to me as a scientist. Let me explain.

Jon: Please do, Dr Stamford.

Dr S: I think the patient community looks to science to provide explanations and that’s not always possible. As a scientist, I know that that’s why we do research – to help us provide explanations. But you can only do that if you are in touch with patients. My work was very far removed from patients. It was very much microscopic detail. As I progressed, it was a case of knowing more and more about less and less. And I think that’s the exact opposite of what one should be doing as a scientist. I think it’s important that we bridge that gap between scientific mechanism and patient experience. If I had seen patients while I was doing my research, I’m confident that I would have taken different directions. But I didn’t have that connection.

Jon: So it’s up to you as a scientist to make that connection.

Dr S: No, you don’t get off that lightly! You forget that we are in this together. So it’s also down to you to try bridge that gap. We need to find ways in which scientists and patients can interact. Ways in which scientists can put their work in context, explain it and its value to patients. We also need to find ways in which patients can truly convey what they are experiencing in language that the scientists will understand.

Jon: I’ve always thought that patients and scientists speak a different language!

Dr S: Yes they do. But my point is that they don’t have to. We need to bridge that gap. We need to find ways in which to find common language. And that language is often born out of common experience.

Jon: What you mean by common experience?

Dr S: In essence the context in which we do our work as scientists needs to be broadened. We need to find ways in which we can experience the wider patient experience. We need to know what it feels like to be diagnosed with the neurodegenerative illness. How that impacts your life from thereon. We need to understand what you go through.

Jon: In essence, you need to walk in our shoes?

Dr S: Yes, I believe we do. But I also believe that you need to do the same. It’s not simply a case of scientists learning what it’s like to be patients. It’s just as important that patients try to learn what motivates scientists. If we need to walk in your shoes so to speak, it also follows that you should put on a lab coat. We, as scientists, should find ways to communicate what drives us to do what we do. I think reciprocity is the issue here. It’s all about communication. It always has been.

Jon: Dr Stamford, thank you very much.

Dr S: My pleasure.

When Jon interviewed Dr Stamford