On Wednesday, we ran another one of our Conversations about Covid.
This time it was different, as not only had we changed the name to Conversations beyond Covid, we were also missing Penny, Colin and Sara, my usual conversation friends. Fortunately Carole was there.
We were joined by Siobhan Reilly, Professor of Professor of Applied Dementia Research at Bradford University.
Siobhan presented some of her research relating to outcomes for people living with dementia.
I know outcomes sounds a little dry, what it turned out to be was a discussion about her work establishing what matters to people living with dementia.
You might ask why this is important, beyond the confines of ‘nice to do’ well, essentially the research assessed through interviews with individuals and groups of people living with dementia what they find important – what matters to them.
You see, what matters to me, is necessarily going to be different to what matters to you – we are different people, with different interests, pasts, futures and passions. We enjoy different food, flavours and fashions. Take away this uniqueness, this individuality and you leave a person diminished. Dementia is enough of a diminisher; this work serves to undo some of that.
Tony Husband the artist was part of the team, adding his interpretation to the work. His are the pictures I have included here. (If you are reading on your mobile phone, click ‘Load All Images’ to see the photos).
Unsurprisingly, when you read the statements, what is important to people living with dementia is very similar to what is important to everyone else.
Those who exist or at least work outside of health and social care might consider this obvious. Why should dementia, a disease, alter what is important? Yet, the reality can be very different. The mechanisms, systems and regulations of health and social care in the UK and worldwide often serve to remove the person, to turn you, me, your mum or dad into a patient, into a series of diagnostic labels or codes.
(It transpires; the UK is a world leader in this, Person-Centred Care.)
As one example, everything that happens, particularly in healthcare has a code.
This is how the accountants and economists can work-out costs or volumes of work, this helps them build contracts and business plans. It is the sharp end of turning soft into hard.
Every disease, test or condition has a letter and a number.
I do know one doctor who is so versed in some of these codes that he writes them in his notes – you haven’t had pneumonia you have had ‘Pneumonia, ICD 104.3’ (or whatever – I made that one up).
All this is very well, and we live in a world where care is dependent on budgets – not wholly, yet, if you only have enough money for three nurses when you need six, the quality of care those nurses provide will potentially be diminished. At the very least three nurses will struggle to support their patients as they should.
Anyone who has spent much time in hospital will recognise the phenomenon of the invisible patient. This is where doctors are talking about someone’s lump or rash as if they are not in the room, porters chatting or carers discussing last night’s TV whilst bed-bathing an old man, it is easy, if you are not careful to shift from doing with, to, doing to, and, when you do to, the person can vanish.
There seems a universal human switch that at times can be unconsciously activated, when people are not seen as people, where the stresses, nature or demands of a role shifts perceptions. It is a feature of every walk of life across every culture.
Patients, with or without dementia experience pain, they can be upset, afraid, happy or sad. They can worry; they have hopes and preferences. They are just like you or me. Indeed, many of them are you or I.
(I did some research a few years ago on the experiences of people attending A&E with hip fractures; if you have dementia and a hip fracture you are more likely to get paracetamol (or nothing) (rather than morphine) as a form of pain relief than someone without.) (Trust me, if you break your hip, you want the opiate.)
It is likely if you are reading my blog you are amongst the converted.
As to how I can get through to those who see my actions as beyond the pale or outside the realm of what a doctor should or should not consider, I do not know.
Siobhan’s work may help shift the dialogue.
Does a 5% increase in survival matter? Does a reduction in bed-days, length of stay or rate of readmission matter to Sadie? Yes and no.
If you are Sadie, you want to be treated as quickly as possible with a minimum of pain and with the appropriate medicines. You also want to be considered as a human. You want dignity, respect, caring and maybe some humour.
Back to what matters to me.
To be honest, I am sitting in a cold garage in Sheffield. It is Saturday morning. I don’t feel much like revealing too much of me.
There is a spectrum.
What matters a lot and what matters so so.
Ambient noise levels, the temperature, the garage who have decided to charge me for the repair I was told would be free*, the rain, the cold, the builder who has spent too long working on our shower, my dog’s swollen ears that have now recovered, the phone call yesterday that kept cutting-out, the offer of a cup to tea or cake, sharing with me a little of who not what you are, comfort, quietude. The grammatical underlining of Microsoft Word, all these things and more. They are what it is to be human (‘ve chuoole’ (and, so on) as Shulem says). Human all too human as he said. We are fragile. We are vulnerable. We are all alone.
*In the end they did the repair for free; Values. What matters. It runs through everything like Blackpool Rock.
** If you want to join the next Conversation beyond Covid which is on Thursday 27th of May between 10 and 11am on Teams, follow this link. We will have Phil Joddrell from Sheffield University discussing his work related to digital isolation.
Reilly, Siobhan T., et al. “What is important to people with dementia living at home? A set of core outcome items for use in the evaluation of non-pharmacological community-based health and social care interventions.” Age and Ageing 49.4 (2020): 664-671.