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.
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 Steph, 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 a Dr. James.
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 as Dr. James. He made good eye contact and he was friendly and courteous. We made our way across the waiting room. I had asked Steph to let Dr. James know that I would need 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, Dr. James 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 current self-employed role as a Psychotherapist and Clinical Supervisor.
The reason that I was attending the meeting was not about these roles, but my professional experience offers me helpful insight into the world of NHS treatment provision. The Junior Doctors training schedule, on this day, focused on the subject of Parkinson’s Disease.
I was invited to attend as a patient with Young Onset Parkinson’s Disease (YOPD). I am one of approximately 6,500 people in the UK who are diagnosed with YOPD. We few are a smaller number of the less than 130,000 people who are diagnosed in the UK with Parkinson’s Disease, in total. This was an opportunity for Junior Doctors to learn about my experience, the symptoms and the progression of Parkinson’s, through talking with me.
Dr. James offered me a choice of chairs and showed kind consideration for my comfort, which was a nice touch. 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 who 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. At least I didn’t have to worry whether I was the cause for his evidently heavy eyelids!
So began 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 with this talented group of Junior Doctors.
The young man who led on asking me questions, whose name I cannot recall, asked incredibly pertinent questions, showed a very human approach while doing so, was able to use humour well, gave me good space to speak and to describe. Above all, he showed great empathy and insight into the moments when I struggled; for this is where he gave me space and time. He made good use of paraphrasing and clarifying techniques and he was sensitive in how he asked his questions. He made a clear point of offering validation and he made a point of evidencing empathy, through the statements that he made around what I disclosed. I felt heard, listened to, understood and, if I was a patient of his, I am sure that I would feel confident about being in his care, for all of the reasons stated here. I was impressed.
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. I knew, from our pre-meeting briefing, that Dr. James was particularly interested in this being part of the process, too, which was reassuring.
From my perspective, 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 to their Doctor. There is 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 Dr. James, to achieve this we would be looking at two or three training sessions for the young Doctors. 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. Dr. James 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.
Dr. James took the time to show me out of the surgery and we chatted as we made our way. I have offered to attend further training days, if needed. I was given a feedback form, to offer the surgery some feedback about my experience of the event. It occurred to me that I should perhaps also seek feedback as to what they gained from my participation on the day. I will include a feedback form to be sent to Dr. James, when I offer my feedback to the surgery. After all, I too can learn from what they found helpful and less helpful from what I offered them.
My final word, in this post, is to recommend 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 treat us, 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) Dean Parsons 2018.