This is not my mum

In the second week of our listening exercise for Commitment for Carers, we hear from Dr John Young, one of our National Clinical Directors for NHS England.

Dame Philippa Russell introduces this post:
“I also have had a very similar experience to the family and the doctor in Mrs B’s story. The message is really important because it reminds us of the importance of listening to (and respecting the views of) the family and friends who really know the patient. Carers are a unique resource – but all too often that resource is under-valued. Carers know the patient when well, they can monitor and explain the background to the hospital admission and they are certainly vital to good recoveries when the day of discharge finally comes. The challenge lies in making the ‘time to talk’ and use that expertise appropriately.”

This is not my mum – Dr John Young

So there I was, a geriatrician going patient to patient, bed to bed around the Elderly Care Acute Assessment Unit. Thirty-one patients to see. That is how I met Mrs B, at about 11:30 when fatigue was setting in. To be honest, there didn’t seem to be much wrong with Mrs B. OK, she was a little bit sleepy and didn’t say much but she smiled and seemed comfortable. As is usual, we were working in a health information void – no access to GP records, and no previous hospital notes. So we had little to go on. Her family had apparently brought her up to A&E during the preceding evening for a ‘check-up’. Her observations were fine, as were her bloods. The nurses were saying that always encouraging word “discharge” and I could hear a muttering in my head about “move on, next patient” etc. But something didn’t seem quite right. So I decided to do the cheapest test on offer in our NHS: the ‘telephone test’.

It was actually quite a nice excuse to sit down at the nurses’ station for a bit of rest. I got through to Mrs B’s daughter. I was greeted by a well-educated voice containing anxiety  After preliminaries, I heard the words that set off a clanging alarm bell: “This is not my mum.”

A simple statement but, in the context of sick older people, almost always indicates that the nasty and serious condition of delirium is present. Nasty, because the experience is unpleasant, described as a “waking dream”, and is upsetting to witness by friends and family. Serious, because delirium, sometimes called acute confusion, carries an increased risk of death and sometimes does not recover and gradually evolves into a dementia. Easy to diagnose? Sadly not. There is no blood or X-ray test for the condition and many cases get missed.  Delirium is commonly quite subtle. The person is simply a bit sleepy and ‘not right’. Mrs B had been ‘not right’ for a couple of days. A few simple questions uncovered the reason – a new pain killer medication had been tried for her troublesome knee arthritis. This had led to brain function side effects that had manifested as the delirium. The remedy was simple – stop the medication!

When NICE developed their guidelines for delirium, they saw right away that friends and family were the key people to know when an older person was ‘not right’.  A special part of the guideline was written just for families.  But doctors and nurses need to be listening. More than that, they need to be going out of their way to ask friends and families about mental health changes in sick older people. We often miss the diagnosis of delirium.  We would miss less if we listened more; if we listened out for that special alarm bell:  “This is not my mum”.

Join in the Commitment for Carers conversation by adding your comments below, completing our questionnaire, or via #NHSThinkCarer on Twitter.

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5 thoughts on “This is not my mum

  1. ‘When I read Dr Young’s blog, I recognized Mrs B immediately. I also remembered a similar experience when I sat by my mother’s bedside in an acute medical ward and also thought that this was ‘not my mother’. My mother had mild dementia and several health problems. But, like so many people with early onset dementia, she was still very much herself when well. Now she was not just suffering from dementia. She had delirium, she was falling over as if she was giddy and she was very afraid. One nurse said to me ‘don’t worry, they all get like this, it’s just the dementia’. But I knew the fears of ‘black dogs biting’ and ‘people hitting’ were just not right. I saw the discharge nurse and doctor coming and thought ‘what will I do – there’s something wrong, if we are sent home, she’ll die.’ To my surprise the consultant sat down and talked. He asked me to describe my mother when well. How had she changed, did she eat, sleep and why had we brought her into A&E on a Saturday night? I felt guilty about taking his time, I felt very foolish saying that I just knew there was something wrong, just as I knew if my children were really ill even if the thermometer said otherwise. The consultant believed me. There were more investigations and more talking and we found the answer. She had a very nasty ear infection. No wonder the ‘black dog’ was biting! After a course of intravenous antibiotics, she came home. She might have dementia, but she was my mother again. I have never forgotten the value of ‘time to talk’. We should all read Mrs B’s story – it’s a powerful reminder of the value of conversations with the carers and a willingness to accept that our instincts and our observations can truly achieve the best health outcomes.’

  2. Pingback: A personal reflection on new beginnings after half a century of caring | NHS Improving Quality

  3. Pingback: Sometimes, when you’re busy being a special needs mum, you need a gentle reminder…… | seventhvoice

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