I slammed the car door and lowered my head onto the steering wheel, and sobbed. Sitting in the car park of my mother’s care home, I cried 4 years’ worth of tears in 10 minutes.
Four years earlier, when she was 87, my mother had, for the first time in my life, forgotten my birthday. I told myself it was just benign senescent forgetfulness, but it wasn’t. It was, on reflection, the onset of her dementia. She had a few falls and was investigated at the falls clinic at the Royal Victoria Infirmary. She developed cataracts which we had treated at a private clinic. We attended Freeman Road Hospital for her hearing aids.
We went to the memory clinic at Saint Nicholas Hospital and had an MRI scan. She was diagnosed with cerebral small vessel disease and vascular dementia for which there is no cure. She fell and broke her wrist and was treated at the fracture clinic and the dental hospital. She got lost coming back from her GP and was lucky to be brought home by neighbours. Finally, she set fire to the cooker after forgetting she’d left something in the oven. The fire brigade was called and social services carried out a carers assessment for us. She could no longer safely live alone.
As my kids were all grown we converted part of the house into a granny flat and moved her in. We were in the middle of covid lockdown, a care home wasn’t an option. Over the following year, I watched as my mother, a fiercely intelligent and independent woman, drifted downward. When she became incontinent, she retained sufficient insight and pride to ask to be admitted to a care home, St. Joseph’s, run by the nuns of The Little Sisters of the Poor. I thought that would be that for the rest of her life. But dementia can always hurt you a bit more…
Image of Joe’s mother and her great-grandson
I was sobbing in the car because The Little Sisters of the Poor told me I would have to find somewhere else for her as she had become increasingly agitated and aggressive as the disease claimed the frontal lobes of her brain. They advised me to call social services.
Some years ago, when I was leading the development of a regional integrated care record (The Great North Care Record), I had taken part in a series of workshops where we examined the journey of a fictional patient, Amy, and we examined the concept of the Amy’s “constellation of care” – the team who looked after her. When I spoke to social services, they suggested I speak to the Behavioural Support Team, who carried out another assessment and suggested a multidisciplinary team approach. Who was involved in my mother’s constellation of care? I told them many nuns, social services, a dermatologist, an audiologist, a general physician, a dentist, a chiropodist, 2 psychiatrists, a GP, a physio, the behavioural support team, 2 solicitors and, importantly for my mother, a hairdresser.
All of these people have separate record systems, the record of her care is an unmade jigsaw puzzle scattered across a region.
It’s now six weeks since I sobbed in the car park, no multidisciplinary team meeting has taken place, and my mother is now in a locked facility for the elderly and mentally ill, and I’m the only person she recognises. She’s lost a tooth and broken her hearing aid and getting worse every day. There has to be a better way.
There is. In June, I met Janez, CEO of Parsek, and he told me about Vitaly, a system that allows multidisciplinary teams to come together virtually, even where there are disparate record systems and across a region, even a country. “That sounds great, Janez”, I said politely, but I didn’t really get it.
NOW I get it. NOW I am a Medical Director at Parsek, as of last week. Serious about integrating care. I am going to put the “I” in ICS if it kills me.
Prof. Joe McDonald, Medical Director at Parsek
Views are my own and do not necessarily reflect the official policy or position of any other agency, organisation, employer or company.