I am always pleased to hear about the progress of one-page profiles and other person-centred practices. I like the simplicity of the idea of recording information about the real person, and what is important to them, and using it to build compassionate relationships and add meaning to people’s lives. Gill Bailey has written in our series before and “Winifred’s story” and the fab person-centred work at Bruce Lodge in Stockport has attracted a lot of attention. Here the story continues…
Statistics tell us that by 2021 there will be one million people in this country living with dementia and there are widespread calls for change in how we support and care for them. I believe passionately that person-centred practices, which are simple tools that help us listen differently, could be the change we need.
Over the last three to four years we have been introducing one-page profiles to people living with dementia and the staff who support them. One-page profiles are the starting point to delivering personalisation. They’ve already been used successfully across many other sectors of health and social care and their purpose is to help understand what makes a person tick and to put that person in the very centre of decision-making about their care.
A one-page profile asks, simply, and on just one sheet of paper, what is important to someone and how they wish to be supported. The compilation of a one-page profiles leads on very naturally to a person-centred review meeting, where family, carers and the person themselves convene to look at what is working and not working from everyone’s perspective. By acting on what we learn from this information, we can make a huge difference to people’s lives.
This is a new way of working that represents a real shift in power and a change of culture. Traditional models of care revolve around the efficient execution of daily routines – washing, dressing and eating. By focusing equally on what matters to people as unique individuals, as well as the things that need to happen to keep them healthy and safe, we can improve the quality of lives dramatically. Person-centred practices are, I believe, the way to deliver personalisation – and this starts with a one-page profile.
It has been ten years since I wrote a one-page profile for a member of my own family who was living with dementia. This was the first time a one-page profile had been used to help someone with this condition. Arthur is my husband’s uncle. He had early onset dementia and had begun to deteriorate noticeably.
I could see that things were going wrong with his care and that his social workers were coming to the conclusion that the only answer was a care home. It seemed to me, though, that a lot of the things causing concern could be sorted out easily just by adjusting the way everyone was thinking. I was working as a trainer and consultant in person-centred practices in health and social care. I felt strongly that I could help Arthur by using the person-centred thinking tools that were so familiar to me.
Arthur and I sat down and developed his one-page profile. On a single piece of paper, we summarised what was important to him and how best to support him. Arthur told me that it was important to him that his food was served piping hot and that someone sat with him whilst he ate. He loved his woolly bobble hat and wanted to wear it constantly and he must, at all times, have a £10 note in his back pocket. These small details may seem insignificant: they’re not, they are what made Arthur’s life complete.
The next step was to convene a person-centred review meeting, which I facilitated and which was attended by everyone involved. We looked at what was working and not working – and many things weren’t working. Although Arthur wanted his food served hot, his carers were worried he’d burn his mouth. Arthur wanted company whilst he ate, but the carers didn’t have time to sit with him after they’d prepared his meals from scratch. The result was that he was throwing the uneaten food into his back garden. He was becoming malnourished and the garden was infested with rats.
Things were going wrong with Arthur’s £10 note, too. Carers were putting it into a drawer to keep it safe but he’d forget and get down on his hands and knees to find it. Often, he couldn’t get up. He’d ring my husband at 2am asking for help.
All of these little things were causing distress to everyone so we took a step back at the review meeting and agreed on action points to address these and other issues. I agreed to cook meals for Arthur a week at a time. If we froze them in bulk, the carer could quickly re-heat them in the microwave and would then have time to sit with Arthur whilst he ate. Carers agreed to respect Arthur’s wishes about his £10 note and to use his one-page profile as a source of information about him.
After we’d implemented the changes, things were much better for Arthur and he was able to remain living at home. He said, “It is tons better now, they sit and have a cuppa while I eat my meals – it is miserable eating on your own day in, day out, you know.”
Arthur’s story shows that small changes can make a huge difference. Imagine what could be achieved for those living with dementia if these person-centred practices were introduced right across the UK. And imagine the care sector moving away from being task largely task focussed towards a new culture based on relationships and the deep understanding of individuals. Isn’t this worth exploring?
Gill Bailey works for Helen Sanderson Associates. Her new book, co-authored with Helen Sanderson, is Personalisation and Dementia: A Guide for Person-Centred Practice. It is available from HSA Press (192pp 9781849053792 pb £25.00) www.hsapress.co.uk, telephone: 0161 442 8271