For me, one of the most powerful methods of communication with Butterfly Scheme Leads is a simple phone call or videocall – a proper chat (ideally with a hot drink by each person’s side!) can achieve a huge amount in a short time.
Two half-hour chats this month stand out in my mind. One was with a Lead at a longstanding member Trust; he was full of energy and ideas and just needed to reorder his wish-list into a sequence of actions that would take him most effectively to where he wanted to be. The other call was with the Lead at an incoming hospital – a new member, learning the ropes and absolutely brimming with optimism and happiness at finally getting a workable dementia care approach into place.
In each case, the pandemic had set the organisation’s dementia care strategic planning back, but these Leads were now poised to take their organisations forward and make improvements. Certainly, the dementia care leadership teams have lost none of their energy and passion to devote themselves to making things better for people living with dementia.
However, something else stands in many Dementia Leads’ way.
Yes, money is short. Yes, we have to be realistic about any spending.
What we also have to be realistic about, though, is the financial damage done to hospitals when they don’t get their dementia care right. It takes a matter of minutes to demonstrate the cost of inappropriate care – typically, extended hospital stays, too often resulting in a change of condition so significant that the patient can no longer return to the place they arrived from. People aren’t in hospital longer because of their dementia; as I’ve shown again and again, people with dementia are in hospital longer if the dementia care isn’t right. It’s not the dementia that’s the problem; it’s each team’s ability to respond appropriately to that dementia.
As a country, we’re still further behind in our hospital dementia care than we were pre-pandemic. The focus on dementia care back then seems to have dissipated and I see very little budget at all going into remedying that. Additional bed nights costs hundreds of pounds per night, so getting it wrong for even one patient doesn’t take long to amount to a cost to an organisation of several thousand pounds – yet Dementia Leads are having to fight for every pound, as if they were costing the organisation money, rather than trying to save it money – and, so importantly, to save distress and danger to vulnerable patients.
As a community, we absolutely have to expect to aspire to the hospital dementia care approach set out in the National Dementia Strategy. If it’s not in place, carers are absolutely right to ask questions – politely, calmly, but firmly – at the highest level. This is a moment when we have a choice – to accept something we know not to be good enough, or to make it clear we now know what’s possible and that getting it right costs far less than getting it wrong.
The Dementia Care Leadership teams and hospital staff in general need us all to support them by pressing for adequate dementia care funding – modest spending in order to save a huge amount more.
People living with dementia need us all to expect consistently appropriate care for them.
Thank you, as always, to those teams out there who maintain those high expectations, too.