I’m becoming cantankerous

(Wiki says: bad-tempered, argumentative, and uncooperative.)

“You’re allowed to when you get older,” said my neighbour at the meeting.

I’m just getting impatient, irritated, fed up with inaction, fed up with people who should, but do not, “get it”.

Latest example…

“I can’t see the point of the Butterfly Scheme. We should all be delivering person centred care to every patient. And I certainly wouldn’t want everyone to know that I had dementia if I were in a ward.”

Erm, where do I start?

This person is a fairly senior member of staff in a mental health trust. And it was a meeting about patient experience.


Butterfly is about knowing that a person has dementia so you can respond in appropriate ways, understand what might be behind behaviours, or make arrangements like bed location that is best for that person.

Butterfly is a model for preventing inpatients with dementia becoming more confused, more disorientated, more institutionalised, less able to return their last shreds of independent living.

Butterfly is a way of keeping patients free of harms while in hospital. Falls, dehydration, malnutrition, pressure sores, longer stays…

If our staff don’t understand dementia they won’t understand the butterfly scheme, or our patients…

And I’ll tell you something else:

Dementia is not something to be ashamed of. If healthcare staff think it is they will never get care right.

As an inpatient I want staff to know that I have dementia (thought it’s still pretty mild). I want the best care. I want people to take a little more time, to talk to me, to know that I can’t stand loud noise, to know I may not remember what meds I take, or when I was last in hospital, or what day of the week it is.

(I seem to confuse Tuesdays and Wednesdays because I can’t remember what I did the day before. And I’m often twenty years out, or perhaps think it’s 1999 still. Just until I pause and think and reflect…)

Look at John’s Campaign.

  • Over a quarter of hospital beds in the UK are currently occupied by people with dementia
  • The average stay of a person with dementia is three weeks but it can be much longer if rehabilitation is a problem or there is no where suitable to go
  • One third of people with dementia who go into hospital for an unrelated condition NEVER return to their own homes
  • 47% of people with dementia who go into hospital are physically less well when they leave than when they went in
  • 54% of people with dementia who go into hospital are mentally less well when they leave than when they went in

From the Alzheimer’s Society 2009 report Counting the Cost: caring for people with dementia on hospital wards

It’s about training all staff to understand that people with dementia are unable to comprehend the world around them in the same way as we can. Communication, perception, loss of memories, confusion…and behaviours in response to feelings for which the triggers have been forgotten.

You need to get inside their world. Take time, smile, touch, talk, find triggers from their past.

You need to locate them on a ward where they can be seen easily by staff, and talked to.

You need to make sure there is engaged go light for them to see well, see a clock (preferably with information about day/night, day of the week, month, year, hospital name, ward name…




Even what the weather is like. Is it spring or Autumn?




You need to know a little about their life. Their history. Family, children, jobs, favourite holidays, first car, interests, photographs…

Enter…ta dah…

“This is Me”


With this you can find out all about someone who cannot tell you for themself.

Simple, printable from PDF courtesy of Alzheimer’s Society, no fancy stuff…

It can travel with the patient, be read by staff in hospital, primary care, the community…

Completed with a family member or carer.

So why isn’t this give out to every patient who has a diagnosis of dementia or is confused?


“Make every contact count”

GP, practice nurse, pre-op, on the ward…wherever…ask if they have one, and if not give ’em one.

In Shropshire we’ve agreed that this should happen. But it doesn’t.

If all ward staff always asked to see it and made sure it was completed and used it would become part of the culture. Of person centred care.

People living with a diagnosis of dementia are supposed (under QOF) to have an annual review of their care plan…so why don’t GPs make sure each patient has and uses “This is Me”?

Yes, I’m becoming impatient. Before long I’ll be an inpatient again and see if things have improved in recent years. I’ll do a patient story as usual, sitting in bed with my iPad. If you see me, now you know what I’m writing!

Yes, I’m becoming more cantankerous. I want to interrupt meetings and ask why in Gods name they can’t just get on and Do It. In the words of my local acute trust values…

Make It Happen!