As I sat drafting this post this morning I was reflecting on how strong the grass roots/frontline/on the ground response has been to #107days and #JusticeforLB. Amongst the families, carers, dudes, researchers, advocates, activists and academics who have stepped up, along with many more, there is one professional group who (personal view here) have really risen to the challenge of learning from what happened to LB. That’s not to say they’re the only group, and I’m not singling them out as favourites, rather acknowledging that as a professional group, nurses of people with learning disabilities, could have responded with anger, or shame, or disbelief, or avoidance, or many other ways. Instead many learning disability nurses have embraced our campaign and fully supported it.
On a day where poor care of people will yet again be exposed by Panorama, I wanted to just acknowledge how heartening it is to know that people working in these roles do care. That doesn’t take away from the abuse or neglect demonstrated by a few, at the frontline (and personal view again here) or at CEO level, but it is worth remembering the many, many people who are providing good care and seeking to learn from LB’s death. Tomorrow night is the second of our three webchats with @WeLDNurses, this one focusing on preventable deaths, more info here. Join in at 8:30pm using the hashtags #WeLDNs and #JusticeforLB.
Day 42 was adopted by Phil Brayshaw a Registered Nurse for People with Learning Disabilities. He has written this in memory of LB, in the hope it encourages at least one person to do one thing differently. Phil also sends his heartfelt love to those living with LBs loss. So, over to Phil:
A few years ago I was talking with a mother of a disabled child and I asked if her daughter had any siblings. “No, she doesn’t have any siblings. She has brothers and sisters!”, she said. Ouch!
It’s a good point though isn’t it? There is something really interesting about how people use professional language to talk about everyday things. As part of NHS Change Day, I made a promise to think about the way I talk about things and the way I write them down. I said I would think about how I might do things differently. I have written this blog to share a bit of my thinking so far.
I want to say something about how professionals write things down. I will start this part by sharing a day in my life; I have tried to write this as if I am a learning disability nurse looking in. I will then go on to tell you about what I have learned by doing it. I have been writing nursing notes for years, but this is the first time I have had a go at writing my own so please bear with me…
7.30am Alert, awake, orientated to person, place and time. Complied well with personal hygiene routine, and mouth care. Required some verbal prompting with washing, dressing and elimination.
8.00 – 8.30am Independent travel, via public transport, to work placement.
8.30 – 9.00am Interacted well with peers; some evidence of task avoidance. See also fluid intake chart.
9.00am Team meeting – Followed spoken commands reasonably well and responded appropriately – demonstrated some restlessness and inattention at times ?ADHD.
12.00 – 12.30pm Lunch. Reported good appetite and ate well.
12.30 – 18.00pm – Work placement
2.00pm – Complained of headache. 4 on a 1-10 painscale. PRN paracetamol self-administered – no difficulty with swallowing.
3.30pm Reports pain is now 1 on a 1-10 painscale.
4.00pm Demonstrated some oppositional and defiant behaviour towards his peers.
6.00 – 6.30pm Independent travel, via public transport, to residential placement
6.30 – 7.00pm Tea. Reported good appetite and ate well.
7.00 – 9.00pm Watched TV in shared area. No other reported difficulties.
9.00 – 10pm Read quietly
10.00pm – Self- administered prescribed medication 20mg Citalopram. Settled well
Signed: A.Nurse RNLD
What does all of this mean?
If a professional wrote about my day, it might look something like this. Although these notes tell you something about me and my day, it is not really what I want to say (I probably wouldn’t even want you to know some of it!) and it is not how I would say it. There is also something about the language that seems strange to me and I wonder why this is. Would it be o.k. to say “my daughter told me to hurry up in the bathroom” instead of “required verbal prompting”? and maybe ‘my’ restlessness says more about the length of the team meeting than it does about me?
It seems to me people with learning disabilities are sometimes judged more harshly than other people. Sometimes small things can get out of hand or they are written down very negatively. For example understandable restlessness in a meeting can be seen as a character flaw or as a symptom of an underlying condition; or a small professional disagreement with a respected workmate can become “oppositional defiance”. There is a real danger in this as I have seen entries like this copied from report to report and follow people for a very long time.
I am not arguing against professional standards in record keeping; as nurses we are encouraged to use professional language and it does have its place. Nurses (and other professionals) have had training about what is o.k. and what is not o.k. to write in notes. We write notes to say that we have done what we are supposed to do; they are not meant to be a diary of people’s lives. They are intended to stand up to professional scrutiny.
Sadly this means the notes we write about people don’t always say very much about them or the things that are really important to them. I suppose clinical notes are about what is “important for” someone rather than what is “important” to them. I think there is always room for making things better, but even if we can’t change the way we write our notes we can be more aware of how writing them shifts the way we think about the people we are supporting.
I do wonder if we could do things differently, for example could we use easier words to help people understand what has been written about them? Could we ask a person or their family to sign their own notes or ask them what to write in them? Perhaps we could ask someone’s advocate to read through the notes to make sure they say what is important to the person? I don’t really know, I am not an expert in this, but I guess it’s worth thinking about?
The way we talk or write things down is not always about the person and is quite often about complying with systems. If we are not careful it can be stop us seeing the person and only seeing the patient. I was thinking of a recent referral I had to see my own GP, I hope it would read like this:
I would like you to meet with Phil, he is a really nice guy. He is usually very positive about things and has a good sense of humour. The first time I met him he made me laugh out loud. At the moment Phil is finding things really difficult…
But I think it probably read more like this:
Could you please see this significantly overweight 40 year-old man who presents with indications of ADHD, low level OCD and intermittent depression and anxiety.
What we write about people frames the way we think about them. If we write with more care and compassion, and stay close to people’s own understanding I think it can only help. Nursing notes are a legacy of our work and of someone’s time in our care, it only seems right that we write them with genuine respect.
A couple of disclaimers…
Well first there is all the usual stuff…these views are my own and not necessarily those of my employer; and second…
Although I really was awake at 7.30am this morning, I was definitely not alert 😉