Tom Isaacs' speech was first presented to the NECTAR conference in Lund in December 2015.

NECTAR’s aim is to bring together European groups who share the common goal of protecting, repairing and restoring the central nervous system damaged through degenerative disease or injury. Here, Tom's presentation focuses on the importance of good communication between patient and clinician.

Good morning and thank you for inviting me to this conference in Lund to talk about communication. The biggest problem, of course, about giving a talk about communication is that there isn’t much scope for not getting your message across. You can’t really get away with a poorly communicated speech about communication, so I just hope you can all listen to my words rather than be mesmerised by my somewhat flamboyant movement!

The ability to be able to communicate complicated scientific issues to people who do not have a scientific background, is a rare but increasingly important commodity. That is why the title of this talk is “Knowing me, knowing you." ... because I'm convinced that although driving forward progress in science relies, of course, on money, money, money (which incidentally must be funny in a rich man’s world), scientific progress is also heavily reliant on communication, communication, communication. That’s the name of the game.

So this talk is based upon my knowledge of being someone who has been a patient living with Parkinson’s for 21 years but who has also for the past 12 years got to know many people who are involved both in the science of Parkinson’s and those who treat the condition clinically. So the “knowing me, knowing you” title is quite apt. I am not sure about the “ahaaa” bit, but perhaps that relates to the surprising fact that unlike the lyrics of the song “knowing me, knowing you, ahaaa…” – there IS something we can do.

So I have split this talk into the following sections;

Communication in general
Doctor to patient
Patient to doctor
Patient to patient
Collaborative Communication - Teamwork

So starting with communication in general. Many of you will be aware of the publications of Albert Mehrabian who said that up to 93% of communication was non-verbal in nature and that far more important were body language and tone of voice to which he attributed 55% and 38% respectively. Now it is worth mentioning from the outset that this rule of thumb goes out of the window when you are communicating with people living with Parkinson’s!

If 55% of my communication was based on body language, then right now you would probably think I was trying to do an impersonation of John Travolta on amphetamines.

At the other extreme and on a slightly more serious note, many people with Parkinson's (pwp) struggle with all aspects of communication in terms of both remembering and speaking words, body language and facial expression can be non-existent and voices can be monotonic. This makes effective communication in Parkinson’s problematic from the outset and means that everyone needs to make an extra special effort to ensure the right messages are being exchanged.

There is enormous scope for misinterpretation particularly when words are used that people don’t understand for instance most people wouldn’t have a clue what the differences between totipotent, pluripotent and multipotent stem cells are!

And here I thought I would show you some excerpts from what I have called “the cynical patients dictionary” which I’m pleased to say no longer really applies but does give some examples of the diverging perspectives that exist in medicine

But since writing the dictionary, communication in medicine has taken a significant turn for the better and the medical model has evolved from paternalism to individualism. Information exchange is now the dominant communication model, and the health consumer movement has led to the current model of shared decision making and patient-centred communication.

This is all wonderful news but I think there is another form of communication which is lacking particularly in relation to Parkinson’s. Parkinson’s affects every part of a person: mind, body and soul – but there is one medicine treats all three better than any other. This medicine is called “Hope”.

Hope ignites a fire in the soul and rekindles the dying embers of ambition and purpose. When pwp accept there is the chance no matter how small, that we are not doomed to a life borne out of our worst nightmares, then we start to gather information about our Parkinson’s and we start to concentrate on the things we can do rather than those we can’t.

Another area which concerns me is too often doctor/patient relationships are evaluated on a patient’s assessment of doctor’s so-called “bedside manner”. There is a certain irony in this because I find the term “bedside” rather irritating in itself. Now I am not one who tends to get irritated by the words used in medicine. I don’t care for instance that Parkinson’s is called a disease or that nurses in the west part of Britain from time to time call me “my lovely”. But I do get irritated by the term “bedside” when used to refer to a doctor’s ability to communicate. I get similarly irritated by the phrase that scientists use when referring to the speed of development of new medicines “from bench to bedside”. How many treatments for Parkinson’s do you know that are administered to us while we are in bed and even the ones that are, tend to be in an operating theatre.

So that ends my little rant about the word “bedside”.

But here are some useful quotes I found about doctor/patient relationships:

Last time I was in Lund, I was giving a talk about sham surgery and was taken to task by Karl Kieburtz. Those of you here that know both Karl and me, will know that there was only ever going to be one winner of that particular confrontation! So I'm quite disappointed not to see Karl in the audience today..... it’s warming on a winter’s day in Sweden to be roasted alive! But the reason I bring this up, is that Karl, as a scientist and a doctor, is a great communicator, and even if I do disagree with his views - the most important thing is that he didn’t tread on eggshells just because I have PD. I could determine his point of view which he communicated to me in a way that was understandable, respectful and completely undermined the basis of my entire argument! 

Good doctor-patient communication has the potential to help regulate patients' emotions, facilitate comprehension of medical information, and allow for better identification of patients' needs, perceptions, and expectations. Good communication skills practised by doctors allows we patients to perceive ourselves as full participants in our health. This experience is a subjective one and is something that plays a critical role of patients' perception of our overall state of health.  

And here I am going to make an observation as an impartial observer of the best communicators in the world of Parkinson’s. There are obviously good and bad communicators from both scientists and clinicians alike, but in my experience by far the best communicators are those who have significant experience in both fields. Now on the basis that it is always good to big up those who could have influence over your own personal future health, I would like to take Professor Roger Barker as an example. Here is someone who sees a lot of patients but who also devotes a lot of his time to the development of good science in the fields of Huntington’s and Parkinson’s. Is Roger a good communicator? Yes Roger is a spectacular communicator and I would make the argument that this is partly because he is involved with both development of new therapies as well as the management of patients with existing treatments.

To prove the point, I will quote from a patient I referred to Roger recently who sent me a message last weekend which says “I was close to despair before you kindly put me in touch with the Professor, and the difference he has made to our lives can’t really be put into words – I think of him as nothing less than our saviour at the moment…”

So combining both scientific and clinical disciplines definitely works from a patient perspective and increases patient involvement and adherence to recommended therapy; influences patient satisfaction, adherence, and improves quality of care and health outcomes.

I believe that there are different stages of acceptance of Parkinson's and as far as this talk is concerned many people living with Parkinson’s never get through the sad, anger, denial phase shortly after diagnosis. But the communication stage is probably the most important stage to get through if patients are to cope effectively with a Parkinson’s diagnosis and communication with our doctors is a major part of this.

Patients reporting good communication with their doctors are more likely to be satisfied with their care, and especially to share pertinent information for accurate diagnosis of their problems, follow advice, and adhere to the prescribed treatment. What is more, the act of engaging in Parkinson's has been shown to be therapeutic.Firstly through better communication better therapeutic decisions for the individual are achieved.

And as you go further up the pyramid patients are no longer passive recipients of healthcare provision and have the capability to resist the power and expert authority of doctors. It is important that this new found mind set is channelled into positive and constructive communication of their views. But for this to happen, you, the doctors and scientists need to be willing to actively encourage patient perspectives and to integrate them into the spectrum of best practice health provision.

But in the context of this conference, what comes into the head of someone with Parkinson’s when the words “CNS transplantation and restoration” are mentioned? Well firstly, most people don’t have a clue what CNS stands for which brings me to another of my entries for the cynical patient’s dictionary. Going back to patients perspectives of regenerative medicine, here are a few points that spring to people’s minds.

As patients we need to understand not just about our own personal situation, but to have a sense of how this fits within the overall setting of scientific progress in Parkinson’s. With greater consensus and consistency of information about the wider issues, maybe there would be no place for these private clinics offering dubious and unproven interventions.But how can patients be guided through their neurological journey so that we have access to the most robust information at the right time? This is the critical question if we are to avoid the health tourism for treatments which don’t have the necessary evidence based procedures to back them up and are becoming an ever more challenging problem.

So patients need to be better informed. We need to be able to distinguish between different types of therapy to have a basic understanding of what the different options are when considering participation in a regenerative medicine trial of which there are quite a few at the moment.

But for many patients, reading the testimonies of other patients as well as the apparently robust clinical data on the websites of these private clinics are quite alluring – and without access to specialist knowledge can be compelling enough to entice them to part with large sums of money. But this is where the extremes of opinion involved with this type of therapy need to be tackled. On the one hand it is being sensationalised by the media or by commercially orientated private clinics and on the other it is associated with slow progress, delayed trials, unpleasant side effects, indecisive regulation and general pessimism.

So how can we better communicate the facts – the truth about the prospects for restorative medicine?

The best way to get the right message through with clarity and common sense is to engage with patient advocates so that they can communicate peer to peer – from patient to patient. This is an absolutely critical area which needs to be properly resourced and utilised as regenerative therapies gets closer to the clinic. Overall patient to patient communication is becoming increasingly scientific in content and powerful in the influence it generates. And finally, of course, patients need to have a clear understanding of the inherent risks of any therapeutic option they are considering as well as the possible benefits.

I think for the purposes of the exciting prospects that this conference is inspiring, it is absolutely critical that patient advocates are involved as early as possible so that the process of delivering these new treatments to the clinic retains momentum, focus, relevance and that all important 'can-do' attitude.

Finally, I'd like to mention collaborative communication. This requires the doctors to take time or set up opportunities to offer and discuss treatment choices to patients and share the responsibility and control with them. Successful information exchange ensures that important decision making is shared between doctor and patient in the context of the patients' situation and needs, rather than a standardised protocol. Care options must always take into account patient expectations, outcome preferences, level of risk acceptance, and any associated cost to ensure the best possible outcome is achieved for each individual patient.

So to summarise, doctor-patient communication is a major component of the process of health care. Done effectively, it can be a source of motivation, incentive, reassurance, and support. A good doctor-patient relationship can increase job satisfaction and reinforce patients' self-confidence, motivation, and positive view of their health status, which may, in turn, influence our sense of wellbeing. Ultimately, good communication leads to the doctor-patient relationship becoming a partnership which in the case of chronic illnesses like Parkinson's can make a huge difference to the quality of of our lives. This partnership is, without a doubt, going to take on an even more important role with development of new disease modifying therapies and regenerative medicine.

And I will close with one final entry from the cynical patients dictionary as follows.

Tom Isaacs

Lund 2015