Thu 28 Jun 2018
His care left me horrified – but it spurred me on in my medical career to make sure others didn’t face the same ordeal
For much of the time while my dad had Parkinson’s I was a neurology trainee.’ Photograph: Alamy Stock Photo
As tremors go, it wouldn’t have rated much on the Richter scale but, back in 1990, the shake in my father’s right hand had a seismic impact on him, and our family.
Dad was in his late 50s, a research chemist, and was hoping to retire in a few years. I was a nerdy 16-year-old Belfast schoolboy, with aspirations of medical school. I can still recall the day he came back from the hospital appointment that confirmed all our fears – it was Parkinson’s.
For the first few years, things seemed to be OK. Dad was taking medication that was working – he was able to get about, do what he wanted and his intellect and wit still shone through. It was only when I started working as a junior doctor that things got more difficult.
Dad’s response to his treatment had become increasingly unpredictable. He would be stuck to the spot like a mannequin, waiting what felt like hours for his medication to kick in. Once it did, he was great again, but the tablets would wear off far more quickly. Our days became ruled by the clock – hoping he would make it through to his next dose without the last one completely wearing off.
Hoping for an improvement, I accompanied him to one of his neurology appointments, trying hard not to be the annoying medical relative in the consultation. We couldn’t have been in there more than five minutes before we were out of the door again. There was no eye contact, no empathy and our concerns about his deterioration were brushed aside with, “Of course he’s progressed, it’s an incurable, progressive condition”. I was horrified and angry. This was not how it was supposed to be done.
Things went from bad to worse, but there was nowhere to turn for advice or support – the services just did not exist. Dad was frustrated and, at times, anxious. Then disaster struck when he slipped on the stairs and broke his hip. Pain, hospitalisation, a major operation, sepsis and strong painkillers all took their toll. The father I knew, the one who went into hospital that night, never really came out again.
Dad had developed Parkinson’s disease dementia. Hallucinations and confusion became the norm, with mum becoming carer and comforter, in addition to loving wife. My brother, sister and I all did shifts, sometimes overnight. There were glimpses of the old dad, even then – his love of sport, his love of being in the company of family – but these windows of lucidity grew shorter and, little by little, month by month, we lost him.
As his condition became more complex, the hospital seemed to take less interest. The appointments remained infrequent, brief and unhelpful. There was no specialist Parkinson’s nurse to speak to, no support or advice for my mum. There was no physiotherapy and nobody seemed to know what to do about the hallucinations, the confusion, the anxiety, the falls. The help we did get was disjointed and every day felt like a huge battle.
For much of this time I was a neurology trainee. I completed a PhD on hallucinations in Parkinson’s and, in 2012, finally became a consultant neurologist, with a specialist interest in Parkinson’s. Dad got to see me reach that milestone, but only just. He died five years ago and, looking back, I can see just how much he, and his illness, has shaped me. I have his scientific brain, his odd sense of humour and, sadly, his nose, but I also have the legacy of his Parkinson’s. I’ve had the kind of education no son ever wants, but every neurologist needs. I’ve seen complex Parkinson’s first hand and I know the impact it has. I’ve seen how a service can let a patient and their family down and I’ve learned the hard way why things need to be done differently.
I decided that my patients shouldn’t have to experience the same issues that we faced with my father, and I set up the Parkinson’s advanced symptoms unit (Pasu) in Teesside. We see people with this complex condition quickly, and support them with a passionate, highly skilled team of Parkinson’s specialists – nurses and doctors, but also mental health workers and therapists. It’s a service I’m incredibly proud of; one that is making a massive difference in our region. It’s also a service I know is almost entirely inspired by my father.
If you would like to contribute to our Blood, sweat and tears series about experiences in healthcare, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com
https://www.theguardian.com/healthcare-network/2018/jun/28/father-received-poor-treatment-parkinsons-heres-what-did
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