This month, I’ve been reflecting on the journey the Butterfly Scheme had taken since its beginnings, over twenty years ago. At that time, I was a teacher, with young children, but I was also carer to my mum, who lived with dementia. When hospital experiences with her illustrated to me the massive gap in skilled dementia care, I studied the situation and discovered that what seemed like an overwhelming range of negative outcomes could be transformed by eradicating what turned out to be a small number of key root causes. As an educator, I knew this had to be made achievable and had to produce immediate and obvious change for the staff involved, so that they could directly link better outcomes with their own enlightened care.
Initially, my proposals were largely met with bewilderment! WHY would we educate all staff? HOW could that be achieved? WHY did focus groups of people living with dementia and carers want a symbol of their own (linked directly with a care approach)? And as for carer sheets – someone in high authority nationally actually told me we couldn’t possibly have notes written by carers included in bedside documents!
Faced with this situation, I began to accept invitations to speak at conferences – nursing, medical, psychiatry – and, bit by bit, people began to get it. Eventually, one hospital trialled the Scheme and before the trial was halfway through, another hospital had witnessed the transformation and asked permission to also adopt the Scheme. From then on, the requests just kept coming, until the Scheme became the one named recommendation for hospitals in the National Dementia Strategy Report and all its core principles – those principles which had initially been so bewildering to many – were copied, word for word, into national guidance.
There is still so much more to achieve. Hospital dementia care shouldn’t be a postcode lottery; staff absence should never leave a gap in dementia care leadership; nobody living with dementia should ever be in hospital longer than necessary, simply because their dementia care hasn’t been good enough.
If one hospital can deliver joyous, insightful, excellent dementia care, so can the rest. These days, I could name a whole list of hospitals whose dementia care is superb and delivered with great pride and dedication. I hope that before long that standard of hospital dementia care can be expected wherever patients happen to live – but for now, I thank from the bottom of my heart all those who have been part of the transformation so far.