Zoe Harris cared for her husband at home before his dementia reached a stage where she was unable to cope, and he spent his final months in a care home. As a result of that experience, Zoe developed a range of communication tools to ensure that carers were aware of his needs and preferences, and which have subsequently been adopted by over 1,000 care homes and home care agencies. Her latest project is Mycarematters, an online platform where people, or someone on their behalf, can upload information to help hospital staff treat the whole person and not just their medical condition. @ZoeHarrisCCUK @Mycarematters @Care_Charts_UK
When I look back, I think Geoff had been showing signs of dementia for at least eight years before his diagnosis, and it was only a matter of months after he was finally told that he had what was probably a mix of Alzheimer’s Disease and Lewy Bodies, that his condition took a turn for the worse. I had to admit defeat and he moved first to a dementia assessment ward and, three months later, to a care home for what turned out to be the final 13 months of his life.
The care home manager was diligent in her creation of a care plan, but I was dismayed to then see it tucked away on a shelf in her office. What chance was there for busy staff to get to know what mattered to Geoff, especially when weekend staff weren’t even allowed in the office?
I was particularly anxious that everyone got the message about one specific issue. They needed to understand the importance of keeping Geoff’s chair pushed up against the wall. His sense of balance had become skewed and if the chair wasn’t secured he’d tip it over. I mentioned it to everyone I met on my daily visits, but on one weekend I got a phone call to say he’d taken a fall; one member of staff had not got the message.
There was no one to blame. There just wasn’t a reliable mechanism to ensure that such information was available to everyone interacting with a resident. So I started scribbling notes and sticking them on his bedroom wall. It quickly made sense to transform those notes into a laminated wall chart at which point the manager asked me to produce more for her other residents. We trialled it for 6 months, made a few alterations and offered it to other care homes. It appeared that something I had created purely to help with Geoff’s care had the potential to make a difference to the quality of life of thousands of other people in a similar situation. To counter the confidentiality argument, I developed a version called the Twist-N-View, where all you see initially is an attractive picture on the wall, turn it over and the person’s needs and preferences are on the reverse.
It was when acute hospitals started to show interest that I realised their challenge was in collecting the information about a person in the first place. I thought back to the time Geoff had to stay in overnight for an operation on a detached retina. He was only in for one night but maybe, just maybe, if staff had known more about him, had paid greater attention to gaining his trust and reducing the trauma of that experience, he might never have ended up on antipsychotics, a significant factor in his rapid decline. As it was, he returned home deeply paranoid and the doctors could only offer drugs to manage his behaviour after he had physically attacked me in the belief that I was impersonating his wife.
Too late for Geoff, but I wanted to find a way to ensure that a person’s needs and preferences could be available to hospital staff from the minute they were admitted to a ward, and to raise awareness of the importance of knowing about the person and not just their medical condition. Dementia is rarely the reason a person is admitted to hospital, but is frequently the cause of them remaining there. Indeed, research has shown that they may stay in up to four times longer than someone without a cognitive impairment, and the most vulnerable have just 3% chance of having their needs met.
So I have come up with Mycarematters, an online platform where a person’s needs and preferences can be recorded, and quickly retrieved, with the use of a unique code. It has been well received during trials in two community hospitals and an acute hospital, with comments like, ”it makes Mum a person again” and, from staff, ”it’s great to know what interests them, so we can have a conversation”, are typical. Those not wishing to, or those unable to go online, can still benefit by creating a paper version in hospital, but if a Mycarematters record can be created in advance of a hospital stay it has the potential to stave off those mistakes and misunderstandings that are most likely to occur in the first 48 hours.
For further information, see www.mycarematters.org and http://www.carechartsuk.co.uk/product-category/mycarematters/