Let’s start reporting the important things.

My name is Sally Percival and I chair The National Co-production Advisory Group (NCAG) and co-chair The Think Local Act Personal (TLAP) partnership, but more importantly I care for my son who has autism and a learning disability and for 10 years I cared for my mum who had dementia and limited mobility.

My mum lived in her own home with support paid for through a health and social care personal budget and she was supported by the care staff from an excellent local agency. Unfortunately, when mum’s dementia got worse, she asked everyone she saw to get her a drink, and everyone who came to see her (me included) asked if she wanted a drink and she would say yes. The result – she poisoned herself by drinking too much water, who would have thought that was possible, wine yes, water NO!

While she was in hospital they also fitted a catheter, so when she came home from hospital for the first few days the district nurses measured the liquid input and urine output and noted the measurements down on a form. Mum’s care staff continued this measuring long after the district nurses had gone and in the end they were measuring liquid input, urine output, food in, poo out. In fact they measured just about everything they could and diligently recorded it on the notes. I am sure if I had stood still they would have measured me too.

I assumed that they had been directed to do it, so I said nothing. Every day, twice a day, they poured her urine into a jug, measured it and wrote the measurements in the notes. This took about 20 minutes a day. It puzzled me a little because mum was catheterised and you could actually see how much was coming out in her bag and the colour. I believe that healthy urine should be the colour of a good chardonnay (yes another wine reference). But still I said nothing. This went on for about four months when finally I asked “why?” The carers said they “didn’t know”, they just saw the District Nurse doing it when mum came home from hospital and thought they should carry on doing it.

Of course, I totally understand there are times that it is really important to measure this input and output for some people, and for a few days that was the case for mum while they made sure the balance of fluid in/ fluid out was right. The care workers however assumed they had to do it when they found the record sheets in mum’s house. When we enquired as to why, the District Nurse was surprised the carers were doing it at all, as it wasn’t necessary. It was immediately stopped.

During that four months, 40 hours had been wasted on quite literally ‘taking the piss’ out of my mum and measuring it because no one (myself included) thought to ask the simple question “why?”.

Time is so precious and that 40 hours could have been used so much better – like just sitting with mum and having a conversation. When I went to see mum, (unless she was poorly) my everyday concerns were, “are you happy, have you had good fun with your care staff and do you want a glass of wine?” (and again!). Still my own ‘check-list’ of sorts, but much more relevant to my mum. None of this sort of information is usually gathered.

So I just ask that providers start to really think about what they are recording and reporting on and work together to ensure that there is a common understanding about what and why things are being recorded at all, especially during this time when people are separated and not able to visit their loved ones. I would always want to know what mum was talking about and that she was happy, rather than she outputted 500mls of urine.

Find out more about Sally here.

This blog is part of our Covid Considerations blog series.

Photo by Patricia Serna