I had been diagnosed with Young Onset Parkinson’s Disease in June 2017. In early 2018, I was honoured to be invited as guest speaker at my local doctors surgery. The subject was my personal experience of Parkinson’s Disease and of treatment. My task was to speak with the Year 3 Trainees from Cambridge and to impart to them an insight about being a person with Young Onset Parkinson’s Disease (YOPD). I was a little nervous, which was to be expected. I have no anxiety about speaking with medical professionals; given my work history, but I was feeling anxious due to this being about disclosing my own personal experience.
I was well versed at not only working alongside medical professionals, but I had also trained medical clinicians and practitioners. In fact, I had also been a commissioning manager of health services, with considerable authority. No, this was different. This was about me; my own experience. Many people mistakenly tell me that they think I put my entire life online; via social media. If that were true, then you would imagine that I would have no discomfort about ‘me’ being the subject of an educational speaking session. Well, it is an incorrect assumption that people make and, I rather suspect, that it will continue to be. So, there I was feeling somewhat nervous about talking about my personal experience of Parkinson’s, to a room of strangers.
What Was Involved.
I had been informed that I would be speaking with the group for half an hour. This was incorrect. In fact, there were two groups scheduled and each of the two groups would talk with and question me for around 45 minutes each; with no break in between. I would need to ask the surgery to plan breaks in, if I should be invited to do this again.
The meeting room was rather dour, in direct contrast to the bright and cheerfully decorated main surgery area. Each group of very young looking, polite and friendly trainees asked me to talk through the history of the development of my symptoms. I was pleased to note that they took an interest in my experience as a patient of the NHS and as a person who just happened to have Parkinson’s. They appeared a little taken aback that my progression to diagnosis had actually taken twenty years; which is sadly not uncommon for people with YOPD. Sadly, too many young people with Parkinson’s have to take up a long-term battle to have their symptoms taken seriously.
While at some points I could feel myself developing an emotional response to telling my story, which I kept as hidden as I could manage, the opportunity to raise awareness and to teach these eager trainees how to recognise the potential symptoms of Young Onset Parkinson’s Disease, was a great motivator to putting aside my uncomfortable senses. It actually became a joy to impart to them what it feels like to be me, through all that I have endured as a result of this disease.
My aim in taking part was to hopefully be part of changing the experience that the next generation of people, like me, face in their teens – early thirties. My belief is that we desperately need more specialist doctors and associated healthcare service providers. Greater clinical awareness may help lead to earlier diagnosis and swifter medical intervention, than currently exists.
These two group sessions were thorough, in-depth and yes, I did have the opportunity to impart my own personal experience of both the facts of the disease but also of my personal ‘journey’ through from identifying the onset of my symptoms to accessing medical services, eventually, reaching diagnosis.
Several Months Later and I was Invited Back.
I arrived with a good twenty minutes to spare. It had started to rain, as I drove into the tiny double-level car park. I found a little bit of chaos going on. The car park was full, with no sign warning drivers that there were no available spaces. Cars were still driving in. Some drivers had clearly just double parked but this blocked the exit and the turning space for everyone else, causing a queue. Fortunately, within several minutes I was able to reverse out and park elsewhere.
I telephoned through to the reception team and asked them to come out to the car park and help the people who had got themselves caught up. The reception team are lovely and always helpful. The woman I spoke with offered to come outside, immediately, to sort it all out. By this point, I had just ten minutes to get inside and into the meeting that I’d been invited to. I didn’t want to be late. I made my way in.
Welcomed With Kindness.
Contrary to what the comical antics of the car park suggest, my doctor’s surgery is a very well run practice. On the ground floor, the pharmacy team are always friendly and helpful and, upstairs, the reception team and medical staff are professional, kind and welcoming. I was quickly met by the meeting co-ordinator, who asked me if I needed anything and arranged for a drink to be ready for me in the meeting room. I was told that I would then need to await to be called to the meeting room, by the facilitator; himself a doctor who specialised in neurological disease.
Within just a few minutes, a middle aged chap with tousled grey hair, a beard and a bow tie walked into the seating area and introduced himself. He made good eye contact and he was friendly and courteous. We made our way across the waiting room. I had asked to avoid the stairs. I don’t always find stairs quite so easy, these days. We walked to the lift and headed down to the meeting room.
From the moment we met, the doctor asked how I was, whether I needed anything and then briefed me on some of the outcomes he wanted to aim for, from my attendance at the meeting. He described to me that I would be meeting with eight junior doctors, in their third year of training. We briefly chatted about my prior experience of attending a meeting like this and, when asked about my working life, we briefly touched upon my fairly recent career in the NHS as a specialist services team leader, my prior role as a commissioning manager of health services and my self-employed role as a psychotherapist and clinical supervisor.
Although the reason I had been invited in as guest speaker was not about my career history, my insight into the world of NHS treatment provision; would be helpful to the learning of these junior doctors.
Sharing My Experience.
I was offered a choice of chairs and showed kind consideration for my comfort. Having already asked me how I would like to be addressed, to which I replied that first name terms would be fine, I was introduced to the junior doctors. They were all welcoming and smiley; except for one young male junior doctor. He could barely keep his eyes open even at this introductory point! I chuckled to myself as I wondered if he’d been up all night living the student life; burning the candle at both ends, so to speak. He became a helpful distraction when my anxiety raised, at points, throughout my disclosures.
So progressed the meeting. One of the junior doctors sat with me at the head of the room, while the others formed a horse-shoe-like audience. He was going to interview me and, while doing so, he would be taking a case history and also trying to glean my personal experience of being a person with Parkinson’s. It was a well constructed process and, while feeling some anxiety at being in the spotlight and at having to reveal such a personal story, I generally felt at ease.
Likewise, apart from the very amusing young chap who really could have done with some cocktail sticks to hold his eyelids open, all of the junior doctors, who went on to ask me questions at the end of the main exercise, did so with similar skill and tact. In fact, for me the humanity of any medical professional is as important as their medical knowledge. It was a relief to see the future generation of doctors showing such humanity in their approach, alongside their obvious clinical skills.
Throughout the meeting, I wanted to do well for other people with Parkinson’s. I wanted to convey something of not just aspects of what it is like to have this experience of living with a disease, but to describe something of my own thoughts and feelings that I have experienced throughout my journey from pre-diagnosis through to diagnosis and receiving medical treatment. I wanted to convey aspects of life that are affected or impacted by having Parkinson’s, before and since diagnosis.
Most of the time was taken up with exploring the early stages of the disease. I felt that the greatest value in what I had to offer would come from the present day experience. Perhaps that is just because mine has been a disease progression of over twenty years whereas most people are diagnosed within a few years of presenting.
What I Would Like to Have Been Asked About.
Actually, I found that there was a great deal more that I would like to have described about treatment since diagnosis and more about what it is like to live as a person with Parkinson’s following diagnosis and the commencement of treatment. It could also be useful to consider the NICE guidelines for the diagnosis and treatment of Parkinson’s, from the experiential perspective of the patient. This is certainly something that I would like to feedback into should the opportunity present.
I think, also, that much more could have been explored around the impact and needs of family and close associated others who are also affected by the illness of their loved one. In fairness, to achieve this we would be looking at two or three training sessions. This was not the occasion for that and I cannot fault the way that this particular session was constructed or delivered.
At the end of the meeting, everyone was very kind to offer me thanks for attending and participating. The facilitating doctor went as far to say that he had learnt some things that would actually alter how he practiced in future and that was incredibly humbling and something that meant a great deal to me. I was quite tired by the end of the meeting, but enthused. I’d had to apologise for my speaking ability starting to decline toward the end of the session. With Parkinson’s, you can find that speech can stutter or slur, which is rather frustrating and sometimes a little embarrassing.
I would say that anyone that has a chronic health problem, illness or disease would be helping others who share that condition, as well as the medical professionals who are learning to provide treatment, by offering to go and contribute to training events like this, in your own area. It feels good to know that you can do something good for your community, out of something as bad as chronic illness.
(c) Deano Parsons. 2018.