The CQC employs "Experts by Experience": people with knowledge and personal experience of caring for older people with different conditions, or living with them themselves. For a limited period they join inspection teams to engage with service users to hear about their lived experience in order to give the service a rating. One or two of us still participate in regular CQC strategy co-production meetings.
For a number of years, I would join small inspection teams for unannounced care homes and hospitals inspections. The ExE's job is threefold: firstly to observe care being delivered. Secondly, to listen to residents or patients' and their families' stories of the lived experience – and for me, that meant people living with dementia. Thirdly, to listen to staff reports of their own working experiences.
It was always a privilege to be present during these CQC inspections and I learnt a lot about care homes and the sector in which they operate. I met many recipients of care who told me that they were treated kindly and meaningfully, who felt comfortably at home and enjoyed good relationships with the care staff. Invariably, these were places where the staff themselves were well-trained and felt well-supported and contented.
Sadly, I also saw and heard care stories that were disappointing. Often these were care settings where the hard-pressed staff felt unsupported or harshly treated themselves.
Only twice did I witness care that was completely unacceptable. On one inspection, at a hospital, observing a ward with six people with dementia, another ExE team member and I witnessed the very distressing, rough treatment of a nonagenarian patient with dementia which could only be described as an abuse of her human rights. We asked the Inspector to stop the inspection so that the incident could be investigated further. It lasted two additional days as a result.
Good communication is what good care is all about. This doesn't necessarily mean conversation. Perceptive and observational skills are just as important. At one care home, one of the residents I spent time with had fairly advanced dementia. Here's the story of this encounter.
When I arrived, the gentleman, let's call him Robert, was sitting in his small room in which, I was told, he spent all his days, being a solitary individual. Care homes worry about men who prefer not to join in with activities. Sometimes they misunderstand their motives (and needs). Robert was sitting in an upright armchair, studiously arranging large chocolate buttons neatly in a grid pattern on a piece of paper towel on the tray table in front of him. I introduced myself and he waved vaguely at a nearby stool indicating that I could sit with him.
Despite his speech being severely impaired, he was quite jovial with the male care assistant who brought his lunch of shepherd's pie and peas, (which he refused) waving away both the plate and the carer. After a slightly awkward exchange, the care assistant offered him a sandwich instead, telling me (unfortunately in front of the resident*) that he often refused hot food at lunchtime, the main meal of the day. He offered to get a cheese or ham sandwich for him instead and Robert chose cheese.
Shortly after, the care assistant returned with a plate of cheese sandwiches with the crusts cut off. There were a small number of paper towels stacked on the man's table (in anticipation of things to be arranged, I wondered). He removed the sandwich triangles from the plate and placed them in neat rows on another sheet of kitchen towel next to the uneaten chocolate buttons in front of him. The care assistant took the plate, explaining for my benefit, "you always do that don't you, Robert, – you prefer to eat it off the paper towel, don't you?"
I found myself wondering whether Robert was now unable to use a knife and fork and whether this was the reason for his turning the hot food away. Had this been explored? As he started to eat one of the sandwiches, I noticed that he had almost no teeth.
The room was almost devoid of home comforts. But there was one photograph – hung so high on the wall that it wasn't easy to see. When I commented it on it, he motioned to me to take it down off the wall and we spent a little while enjoying looking at it together. The care assistant popped in again. "You like to look at that picture, don't you Robert?" I thought I could understand why.
The wintry photograph had probably been taken about thirty years earlier. It showed Robert as a younger man in country clothes – sports jacket and breeches, thick socks and a cloth cap, with a shot gun slung at ease in the crook of his arm; standing in a field with a colleague and a young boy who were also dressed in warm clothes and caps. Held between them was a long sturdy stick from which hung a number of dead rabbits. Laid out in neat rows in front, were some twenty or thirty further dead rabbits. Although his speech was hardly intelligible, I gathered that the boy, who I wondered might have been his son, had grown up to become the gamekeeper that he had once been.
Here, I thought, were his chocolate buttons and his sandwiches. Was he replicating the photograph to comfort himself, or to tell his story, or both? It seemed he was communicating his story very efficiently. Did this explain his preference for the food and the way he preferred to eat it? Eating a picnic lunch out in the fields was something he might well have done all through his working life. I think he was telling the people caring for him a lot about himself. I just hoped they were listening.
* It is rightly considered poor practice to speak about a person with dementia as though they are not present. It is demeaning and condescending.
