The Art of Saying No

Cite this article as:
Andrew Tagg. The Art of Saying No, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.33214

I have been a consultant for almost six years now. I love putting on my black DFTB scrubs, waving hello to the comms clerks as I walk past triage, and doing what I think is a good job. I am no longer a new FACEM, despite what I think, and I’ve reached that point when advanced trainees are starting to ask me for career advice. I think back to what I had been told.

Join lots of committees,” they said.

Say yes to everything.”

Looking back, I am not so sure that this is the best advice. Has it done me any good? It has certainly helped my career. But there is much more to life than your job. Perhaps, just perhaps, it is better to learn to say no?

The first no

You may not remember your first time, but I’m pretty sure your parents do. Were you snuggly strapped into your highchair trying to figure out why you needed to open your mouth for that limp, overboiled, spear of broccoli? No, here doesn’t come the aeroplane. Were you dragging your heels around Woolworths, clad in an embarrassing mismatch of brown corduroy and mustard yellow polyester when it was time to leave the plastic heaven of the toy aisle? No, you scream as you fall to the floor in the perfect imitation of premier league midfielder. Or were you just lying there, minding your own business, enjoying the warmth of freshly laid poo in your nappy, when some do-gooder decided you needed to be naked and cold (and clean)*?


Those two letters hold such power. They are often our first show of defiance so why don’t we want to use them more as we get older? Maybe, it is the sense of embarrassment? We feel for the harassed parent as they leave their wailing child to their tantrum on the filthy linoleum. Do we then display negativity bias, our brains recalling in exquisite detail, these confronting turns? As we grow older, programmed to please, rather than upset, we choose to say yes instead.

Why? – E – S spells YES

We crave approval. Our sense of self-worth is inherently tied in with our need for acceptance by the tribe. By pleasing people, and saying yes, we then avoid conflict. It is easier to answer in the affirmative than feel the social tension of a request denied so there is this innate sense that we should conform to the norm of saying yes. If we say no they might turn their burning gaze of approval away from us and we will no longer belong. Making the active decision to say no means you are turning away from the tribe and deliberately turning down the emotional reward offered.

But, we are not responsible for other peoples feelings. If we can learn to say no, graciously, then our lives might be a little easier.

Perhaps, we say yes because it is easier than thinking through all of the options? Paralyzed by choice we answer a request on autopilot. At that exact moment in time, with your director standing in front of you, you don’t want to hesitate and so you blurt out the first thing that comes to mind.

But by saying yes, what are you saying no to? Are you saying no to playing in the park with your children? Are you saying no to catching up with a friend that you haven’t seen for ages because they have been self-isolating? How comfortable are you with saying no to your own self-care? In the same way that we rehearse hard conversations, in our head or with friends, we can practice our new script until it becomes a new auto-response.

Let me get back to you later about that. I need to check my other commitments.

You may, indeed, want to take up the opportunity offered. But only do so after carefully weighing up the costs and benefits.

There may be a deeper, darker reason for saying yes, too. Being busy can be a way to avoid being. Living a distracted life makes it easy not to think about the hard things. I know I have been guilty of this. It is much easier to get on and write another blog post, or join that committee, or pick up that extra shift than think about where your life is heading. It is not sustainable. It is also not good self-care.

The myth of the perfect life and FOMO

In this never-off world, we are exposed to a heavily curated alternate reality – one where all of our friends are writing papers, presenting at conferences and transporting critically ill patients around the country in helicopters, all the while maintaining elegantly coiffed hair. With greasy thumbs swiping up and down our timelines, we compare ourselves to that Finsta-life and wonder why we have less. We wonder why don’t have what they are having and we feel a sense of sadness.

Patrick McGinnis called this FOMO – the Fear of Missing Out. This is a form of loss aversion and so we say yes to things because we worry that we are going to miss out on some remarkable opportunity that will catapult us into that perfect life. We worry that the opportunity will never again present itself, in part, because we find it hard to see our own merits. We think that good things only ever happen to us on account of luck or serendipity. Because we cannot always see our own goodness we rely on the validation of others. And how do we gain that validation? We say yes.

The problem with saying yes (to everything)

It is easy to say yes. It is far easier to say yes, than no. But what does it lead to? If you say yes to everything, then nothing is important.

Tsundoku

We all have them – on the bedside cabinet, in the office, on our electronic devices – that pile of unread books, spines unbroken, stories unread. They sit there, tempting us with their bright and colourful covers. “Read me,” whisper untouched pages, knowing that once you have picked them up, you will become lost in the strange flow of time that only books can create. There is a Japanese term for this memorial of words and lost worlds – tsundoku. And, like your boss asking you to do that one extra shift, you might find it is time to say no too. Instead of saying yes to all of the books, it might be time to create what Umberto Eco would call a library of the unread. When you can find out the answer to almost any question with a click of a button, isn’t it better to know where to find things rather than to have them lodged in your own private memory palace?

While I am not denying the value of a perfect piece of fiction, it is easy to say yes to every colourful cover in the bookshop. We need to place more value on our time and learn to say no. We need to set boundaries and focus on what actually is important. What projects are sitting on your bedside table of ideas? What requests have you said yes to that are left unfinished, or perhaps not even yet started? Every time we add a new book to our tsundoku we are reminded of our failure to complete that thing we started. By saying no, you are actually committing to being able to say yes to something else.

On boundaries

When the COVID pandemic began and work shifted, from office to home, boundaries became blurred. It was easier to ‘just send a quick email‘ before closing the laptop for the night. Before you knew it, you were ensnared in a reply-all thread regarding which dressing you should stock for paediatric cannulation (Editor’s note – Tegaderm teddies, obviously) and your children were scratching at the door like extras from a George A. Romero movie. It has been hard to switch off when working from home but until someone pays me to look after my own children they cannot dictate what I do when I am not at work. Firm boundaries need to be set.

Have you ever checked your e-mail at 8pm on a school night and been tempted to respond? It’s easy, especially if you only need to dash out a couple of lines. What you are doing is eroding the boundary between work and not-work. You are setting an expectation that you will respond, even if you are not at work. I used to be that person – the one that would respond to enquiries at 10 o’clock at night. Achieving Inbox Zero would give me a teenty tiny dopamine hit. But I never considered the cost. I never considered what I could have been doing instead. I’m a huge fan of Greg McKeown’s Essentialism and responding to an e-mail late at night is just not essential. It does not need to be done.

And the funny thing is if you leave a problem for a day or two it often seems to sort itself out. Someone else volunteers for the job. The lost vein-finder shows up. Management changes their mind on PPE requirements (again). It has been a long time coming but now I say no to checking my email obsessively and just wait.

So, having considered the importance of saying NO, here is some guidance on the how.

1. Focus on the request not the feelings

You are saying no to the ask not the asker. Don’t worry that you will hurt your bosses feelings because you are saying no to something. This is a refusal, not a rejection. All you are doing is setting boundaries. If you already have a lot on your plate ask what task they want you to de-prioritize in order to take on a new project. That way you are asking them to make the choice, not you.

Thanks for thinking of me. I’ve already got a lot a other projects on the go at the moment for you. Which one would you like me to drop?

2. What’s the alternative?

Perhaps you have been asked to give a talk and your digital diary is full? This is an opportunity to practice allyship and show your support for a colleague that might be better placed to take on the task. We know that, despite women being in the majority in paediatrics, they are much less likely to be invited to speak at an event, or be listed as first author. This is the perfect opportunity to suggest that a colleague who is much more qualified than you take the (virtual) stage.

I’m sorry but I have a lot on next month so the answer will have to be NO. But let me give you the name fo three amazing women that would do a far better job than I ever could.

3. NO is a complete sentence

You don’t have to say why. You do not have to over-explain. “I cannot do the extra shift because I am spending time with my family.” That is enough. You don’t need to over-explain and go into details about what you are going to do. You are setting the boundary between work and home. You just need to say no with confidence. It’s too easy to bargain with someone that over-explains.

If you do feel the need so say something after the no then make sure you use the word because. In one of those classic social psychology studies that could only be performed before the dawn of the internet a group of experimenters would approach people lining up to use a rigged photocopier. An actor, weighed down with a pile of textbooks (pre-internet, remember) would struggle to the front of the queue and ask to skip the line. Langer et al. (1978) found that just by adding the word because, the actor was much more likely to be allowed in, even if the excuse made no sense. It was the word because that seemed to work wonders.

No, because I would like to spend some time with my children.

4. Sorry is NOT the hardest word

I’m sorry, I can’t” seems like the polite way of turning someone down but you do not need to express regret. You are not sorry. Reframe it. You are saying yes to other important commitments, to the things you want to do. Just because you ran the medical student teaching program last year, it does not mean that you have to say yes again this year.

No.

5. Just say NO

Those of you who grew up in mid-80’s Thatcher-ite Britain will recognise the song. There are some requests where the answer is obvious. Channel your inner Zammo and just say no.

NO.

What are your real priorities? Is this important? Will it actually matter in a years time? Five years? If you had to give the talk that you have asked to give tomorrow would you say yes? Perhaps, if it is not a ‘Hell Yeah‘, then it should be a no?

*No was definitely the first word out of my middle daughters mouth in exactly the circumstances described. The other two managed shoe and more.

Selected references

Guadagno, R.E., Asher, T., Demaine, L.J. and Cialdini, R.B., 2001. When saying yes leads to saying no: Preference for consistency and the reverse foot-in-the-door effect. Personality and Social Psychology Bulletin27(7), pp.859-867.

Kline, S.L. and Floyd, C.H., 1990. On the art of saying no: The influence of social cognitive development on messages of refusal. Western Journal of Speech Communication54(4), pp.454-472.

Izraeli, D.M. and Jick, T.D., 1986. The art of saying no: Linking power to culture. Organization studies7(2), pp.171-192.

Langer, E., Blank, A., & Chanowitz, B. (1978). The mindlessness of Ostensibly Thoughtful Action: The Role of “Placebic” Information in Interpersonal Interaction. Journal of Personality and Social Psychology, 36(6), 635-642.

Patrick, V.M. and Hagtvedt, H., 2012. “I don’t” versus “I can’t”: When empowered refusal motivates goal-directed behavior. Journal of Consumer Research39(2), pp.371-381.

Emergency ambulance transport in those with Autistic Spectrum Condition

Cite this article as:
Vicki Marchant. Emergency ambulance transport in those with Autistic Spectrum Condition, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.33246

A small bit of knowledge about Autistic Spectrum Condition (ASC) can make a huge difference in how an emergency situation evolves. ASC is also referred to as ASD – Autistic Spectrum Disorder – but there is a move away from using the term “disorder”, driven by autistic people themselves. Many see their autism as part of their character and identity, hence “autistic people” rather than “people with autism”, and prefer to think in terms of a condition rather than a disorder due to the negative connotations this carries.

Unlike the UK, Ireland does not have official clinical guidance for transporting those with ASC or communication difficulties to the ED. There are two ambulance services in Ireland: the Dublin Fire Brigade (DFB), who run 12 ambulances in the greater Dublin area, and the National Ambulance Service (NAS) who run the remainder of the ambulances in Dublin and the rest of the country. Neither has any formal training in the management of those with ASC. Although some personnel have knowledge of the intricacies of the condition this is mostly due to personal experience with friends or family members.

A call to a situation where the patient has ASC is usually a last resort. Family members don’t want to make the situation worse by calling in strangers and will have tried their best to de-escalate the situation themselves. If the call has been made, the situation has gone past their control and they are admitting they need help. The parents may feel they have failed their child and the attitude of the staff coming into the house can make a huge difference to all involved.

Sam is 15, he’s 5ft 10 and 20 stone. He trips going out the front door and twists his ankle. He starts screaming and tries to get up. He puts weight on his foot and it goes from under him, further aggravating the injury. Due to his size and his injury, he is unable to get up. His dad tries to help him but is unable to lift him. He is screaming very loudly and a crowd is gathering. His family call an ambulance which arrives after 15 minutes. You can hear his screams as you pull up. There is a large crowd gathered, watching and offering ‘helpful’ suggestions to his father who is sitting behind Sam gripping him very tightly. Sam is trying to headbutt his dad and writhing around in apparent agony. You can see his ankle is injured but you can’t get near enough to assess him without getting kicked. You have to shout loudly to make yourself heard and the crowd are enjoying the entertainment.

You feel you need a few more bodies here to help and escalate the call to a behavioural emergency scenario which warrants the police being called. Within a few minutes you have two police officers with you shouting at the dad, trying to get him to stop assaulting the boy. The dad tries to explain but can’t be heard over the noise Sam is making, which has somehow gotten louder. You, your colleague and the two police are standing over Sam trying to hold him down with the dad telling you to get away. The crowd are filming everything. Every time Sam kicks out, he injures his ankle more. The situation is completely out of control.

From a Different Perspective…..

Sam is 15, he’s 5ft 10 and 20 stone. He is autistic and non-verbal. He trips going out the front door and twists his ankle. He starts screaming and tries to get up. He puts weight on his foot and it goes from under him, further aggravating the injury. Due to his size and his injury, he is unable to get up. His dad tries to help him but is unable to lift him. He is screaming very loudly due to pain and frustration and a crowd is gathering. His family call an ambulance which arrives after 15 minutes. You can hear his screams as you pull up. There is a large crowd gathered, watching and offering ‘helpful’ suggestions to his father who is sitting behind Sam bear-hugging him very tightly. One of Sam’s coping mechanisms to deal with unusual situations is to headbutt whatever is around him, in this case the ground, so his dad is sitting behind him to try and stop this but also giving deep pressure to Sam which helps comfort him. You can see Sam’s ankle is injured and a quick survey of the situation shows you that Sam is aggravated by the noise in the crowd also.

You ask your partner to quietly move the crowd on and you slowly approach Sam and his dad but stay out of kicking distance. You introduce yourself to Sam and his dad in a calm, quiet voice and ask what you can do to help.  By asking this way you are acknowledging that the parent knows this child the best. You may be asked to go into the house and get an object to help calm the child: a blanket, a tablet or a favourite toy. In this case Sam’s dad asks you to go in and get his sleeping bag which he immediately puts over Sam’s head. Sam continues to sob but immediately stops kicking out. You are able to chat with Sam’s visibly shaken dad about what happened, and you can look at Sam’s injured ankle. You say what you are going to do and Sam’s dad says it in words Sam may understand. Although he protests a bit, you are able to assess his ankle and determine he needs ED assessment as it may be broken.

You are able to splint his ankle and, between the 3 of you, help Sam onto the chair and get him into the ambulance. His father asks if you can dim the lights and he runs back into the house and grabs a few bits including a tablet which he gives to Sam who is now trying to undo the seat belts. Sam calms immediately and even lets you do some obs when he’s distracted although he thoroughly dislikes the BP monitor and rips the cuff off. You pre-alert the hospital to ask if they can find a quiet space for Sam to wait to be seen and give them chance to review Sam’s care pathway, if he has one.

If you have no knowledge of ASC you will approach this scenario as an ordinary call and walk into chaos. You will see the father essentially holding this child down for no reason and you will act accordingly and put the safety of the child first.

The Autistic Spectrum

People with ASC vary from having very mild symptoms and being able to manage very well to someone like Sam who is completely non-verbal and also has an intellectual disability. The autistic spectrum isn’t a linear thing, with “high functioning” at one end and “low functioning” at the other. Think of it as a pie, made up of variable-sized slices – the social communication difficulties slice may be quite big, whilst the slices for inflexible thinking and anxiety may be fairly small. The whole pie is different for every autistic person. “Slices” vary, depending on the source used, but commonly also include sensory issues, routine, repetitive movements and intense focus or interests.

Autistic Symptoms and Coping Mechanisms

One of the most common symptoms of ASC is a dislike of change in routine, leading to use of personal coping mechanisms which can be seen as self-harm: head-butting walls, picking at skin etc. In this case, Sam was trying to headbutt the ground which would have caused him more injuries than just his ankle. As with some with ASC, Sam does not understand the consequences of doing this so could hurt himself badly before stopping.

Some autistic people have sensory processing difficulties. This can mean that the body misinterprets certain sensations – light touch may be uncomfortable, deep pressure may be comforting, loud or sudden noise may be very distressing. This is why Sam’s dad had a very tight hold on his upper arms. Other coping mechanisms in those with ASC may include talking about one subject, loudly and constantly, perhaps to distract themselves from something distressing, or sometimes if they feel they are not being engaged with. Some may not understand you may be talking to someone else about something more important, the situation is scary to them and this is their way to cope. Further symptoms may include a dislike of loud noises, bright lights, strangers or crowds.

You will be seeing these patients on an already bad day. Something unexpected has happened which has put them out of their comfort zone already, but it has happened to the extent that someone else has been called to their side. This can often be in a noisy environment with lots of people trying to help. Their senses are overloaded and they will need to employ all their coping mechanisms to try and manage.

You will not always know immediately that a person has ASC. They may tell you if they are able, or a family member/carer may say. If you feel the person’s reactions are out of proportion given the situation, consider whether they may be autistic.

Tips to Remember

Unfortunately, parents are used to getting unsolicited advice about how to best manage their children and a large number of people feel the symptoms of ASC are just a child being naughty with poor parenting. Parents may appear defensive at first but asking how you can help may calm them as they realise you are there to help rather than criticise.

Speak quietly and don’t crowd the patient. Don’t touch them without asking. Ask what you can do to help: do they have a toy/blanket/comforter with them that you can get? Is there anything that usually helps to make them feel more comfortable? If they are in the ambulance, can you turn the lights down and travel without the siren?

First and foremost, go into every situation with an open mind and ask what you can do to help. Not everything is as it looks and by being aware of this you can turn chaos into, well, less chaos.

Defining Learning Disability

Cite this article as:
Liz Herrieven. Defining Learning Disability, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.33287

In all areas of paediatric practice (and beyond), we come into contact with children with a learning disability, learning difficulties or autism. Terminology is important, not only for making sure we understand a child’s diagnosis properly, but also for providing the best possible care. Getting it right can also help gain the trust of parents and carers who will often know far more about appropriate language use than we clinicians. This guide aims to describe the key points to remember – some of them easier to grasp than others.

Learning Disability

Let’s start with learning disability or LD. 2.5% of the children in the UK have a learning disability, yet it’s one of the most commonly confused terms. Probably the most pragmatic and descriptive definition is that used by Mencap, a UK charity supporting people with LD: “A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.” The World Health Organisation keeps it short, although open to discussion and interpretation. For them it’s “a state of arrested or incomplete development of mind.”

Having a learning disability means an individual will not only find learning difficult but also face challenges with retaining, processing, reasoning and deducing information. Some people will find different areas of learning more challenging than others. Children with Down syndrome have a relative strength in visual learning and find learning or remembering auditory information more difficult. Building on strengths can help to balance out some of the more challenging areas. Some people with LD may be able to communicate very well, even if they struggle to understand all of what is communicated to them but many will have an associated speech and language problem.

The term intellectual disability, or ID, is used rather than LD, to signify that the condition affects intellect and is lifelong. This fact is important – the individual will need support, depending on their level of disability, for the whole of their life. There are many causes of LD, all involve the developing brain – genetic or chromosomal conditions, intrauterine infections, perinatal hypoxic brain injury to name but a few. After the brain has developed, such an insult is described as an acquired brain injury.

The level of disability may be mild, moderate or severe, depending on IQ, although this is rarely formally calculated and actually doesn’t really add much. Support and care should be tailored to an individual’s needs rather than their IQ.

The term PMLD is used to describe individuals with Profound and Multiple Learning Disability. These patients may have fairly complex comorbidities alongside severe learning disabilities. They can affect not only their ability to learn and process information, but also their ability to communicate and to be independent.

Learning Difficulty

A learning difficulty is very different to a learning disability, and is far more common. Things like ADHD, dyspraxia or dyslexia are all examples of a learning difficulty. They all make learning more difficult, but don’t affect overall intellect or IQ.

Autism

Autism, or an autistic spectrum condition (ASC), is not itself a learning disability, although about one-third of people with ASC will also have LD. The National Autistic Society (UK) describes autism as “a lifelong developmental disability which affects how people communicate and interact with the world”. There are lots of different elements, each of which may be present to a greater or lesser extent within one individual, so each autistic person is different from the next. The autistic spectrum is not a linear thing, with someone being more or less autistic. “High functioning” or “low functioning” are not particularly appropriate terms either. It’s more helpful to think about how someone’s autistic features affect them. The most common features include social communication difficulties, sensory processing disorder and restrictive or repetitive movements.

Social communication difficulties include challenges in interpreting body language or facial expression, and reading hidden meaning into words or phrases, particularly when metaphors are used. Sensory processing difficulties involve the body misinterpreting sensations. A light touch may be perceived as very painful whilst a deeper touch may be more comforting. Bright lights or certain noises could be very distressing. Restrictive or repetitive movements are often comforting, or theymay distract from upsetting or uncomfortable situations.

ASC was more commonly known as ASD, or autistic spectrum disorder. The move to calling it a condition, instead, is an attempt to remove unnecessary negativity. ASC encompasses many other conditions such as that previously known as Asperger syndrome. This name is no longer preferred – Hans Asperger has a troubling history. It was used to describe people with normal or even high intelligence, coupled with autistic features. Other conditions included under the ASC umbrella include PDD (pervasive developmental disorder) and PDA (pathological demand avoidance).

Person First vs Identity First Language

We use person-first language for many conditions. Someone with asthma is not defined by their asthma but has a whole identity of their own, so they are described as someone with asthma. Someone with Down syndrome may share certain physical features with someone else with Down syndrome, but they have their own identity and character which is very different from that of others with Down syndrome, so they are described as a person with Down syndrome, not a Down’s person or, even worse, a Downs.

Child with learning disability

Many autistic people feel that their autistic features form part of their identity – that they would be a very different person if they did not have autism, so they describe themselves as autistic, rather than a person with autism. You can read more about person first vs identity first language here.

And if you can’t remember what to say when?

Ask! It’s always better to ask someone how they would prefer to be described than to guess. All people. whether they have LD, a learning difficulty or ASC are individuals and will have their own preferences, likes and dislikes. Getting the language right can be a great start, but being honest and open when you’re not sure is a very close second.

Mother Ship by Francesca Segal

Cite this article as:
Mahima Chandrasekhar and Tara George. Mother Ship by Francesca Segal, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.32838

A mother’s experience of the Neonatal Unit

Mother Ship by Francesca Segal chronicles the first 56 days, from birth to discharge, that the author’s twin, 30 week, premature babies spent in the NICU. She describes a journey that is far from smooth sailing; rocky and filled with turbulence from the start. At the same time, it is one filled with hope, longing and joy, which ultimately steers this ship to its destination: home. 

Book cover for Mother Ship

Segal describes how she expected her pregnancy to progress, and how divergent from reality it became. At times, her words are soaked in guilt and come through to the reader in waves: “we are encouraged to believe that a mother’s body is mad and clever… though mine was not quite mad and clever enough to sustain a pregnancy.” It is soothed, in part, by her well-timed jabs of humour, expressed through the rose-tinted glasses of nostalgia. She celebrates bonds forged through shared experiences between the mothers of the ‘milking shed’, makes us appreciate the enduring presence of her husband and prioritises hygiene in a way that would make every Infection Control team proud. 

Importantly, Segal highlights many areas for improvement in the way care is provided. Her observations of the NICU bring attention to the lightning-fast and disorientating ward rounds, the constant use of medical jargon, frighteningly alien words second only to the name of that town in Wales (you all know where I am speaking about), and reluctance in having to involve yet another ‘Mum’ in decision making. Despite this, she showers gratitude upon the healthcare professionals with whom she shares a complicated but respectful relationship.

The book evokes a cocktail of emotions, prompts you to give your mother a call, and makes you ever so fond of little ‘A-lette’ and ‘B-lette’. Mother or not, clinician or not, a treat for all who read.

Why I am recommending this book

Tara George (GP)

Mother Ship provides a window into a world that may be familiar to many of us in a work context but seen here through the eyes of a mother. Disorientating, frightening, a liminal place where babies born too small, too soon may live or may die. What really struck me was the camaraderie of “the milking shed”, the irreverent humour, the ability ultimately to be human when that was all she had left. It left me expanding the horizons of what the word “mother” really is.  There are important lessons for those of us who look after whole families as well as for paediatricians – leaving your newborn (safely?) in the hospital and being at home, a mother with no mothering to do. As a GP with some interest in perinatal mental health, it is clear how much mothers in the scenario need support but it is also made strikingly obvious how little time she has for anything other than sleep, travel, endless expressing of milk and being in the hospital.  The moment of absolute compassion and wisdom when the nurses send her and her husband out for dinner one night reaffirms for me how truly amazing NHS staff are at both the high tech bits of medicine and at the human side.  

Mahima Chandrasekhar (FY2)

Medical school has always highlighted the merits of clear communication, empathy and a multidisciplinary approach to decision making. We practiced a lot of these skills in simulated environments and attempted to apply our learning into the clinical environment, to varying degrees of success. Reading Mothership has provided me with the perspective of the mother. Apart from being an enjoyable and moving story, it has provided some constructive feedback on our communication as a health profession. This book has given me several points to reflect on:

‘Mum’ has a name!

It is often hard to remember all the names of all the children and parents. However, making that effort to ask for her name in the ward round will improve the quality of your rapport. It will also make the mother of your patient feel more like she is part of the team making decisions about the child: which she is.

The mother of your patient might be a patient too

Sometimes, the child is born via emergency C-Section, and the mother standing opposite you, less than a day after the operation, is on a cocktail of drugs to allow her to achieve basic functionality through the haze of pain. The information you are giving may not be absorbed in the way you intend, and something as small as offering her a chair to sit on, can make the world of a difference.

Avoid jargon

I often have to Google certain terms and abbreviations, especially when moving on to a new job. If it is confusing for a medical junior, I can imagine it being downright disorientating for a non-medical parent. Explaining the plan and developments in detail without jargon can help avoid unnecessary anxiety and misunderstandings.  

Involve parents in the decision making

Inevitably, parents will need to care for their children when discharged from hospital. Ensuring they are aware of the ongoing medical issues, red flags, NG tube training, basic life support, emergency numbers to call, is paramount for a safe discharge. Involve parents early, to avoid information dump at the end.

Being at the start of my medical career, everything is a learning point, and I could go on. You will make your own reflections, both personal and professional, when you pick up this book.

Mother Ship is an enjoyable learning experience on communication. A case-based discussion that is riveting and heart-warming, right in the comfort of your own home, with a warm cup of tea in hand and a rich environment for reflection. 

If you want to go deeper then please watch this heartfelt talk from neonatologist, Jasmine Antoine, about being the parent, not the practitioner in NICU.

Communicating clearly

Cite this article as:
Liz Herrieven. Communicating clearly, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.32916

The Joint Royal Colleges Ambulance Liaison Committee (JRCALC) produces guidance for ambulance services across the UK. I was thrilled to be asked to contribute to this in the form of a new chapter on patients with communication difficulties. This post expands on that guidance, which was written to support pre-hospital clinicians in providing the best possible care to their patients who face challenges with communication. This may be due to a wide variety of underlying conditions, including learning disability, autism, hearing loss, dementia and dysphasia.

Communication is vital to all that we do – from the first contact with a patient, through history taking and examination, to initiating treatment and explaining procedures. We have to do our very best to get it right. This is perhaps even more important, and more difficult, in the pre-hospital field, where stress levels are high, the environment can be unpredictable and time is short. Clinicians meeting patients for the first time need to quickly assess the situation and also win trust and gain understanding.

Communication is a two-way thing. It sounds obvious, but it becomes even more important when patients find communication difficult. Not only do we have to try our best to make ourselves understood, but we also have to try our best to understand our patient.

It’s also important to remember that communication and understanding are two very different things. Someone may be able to communicate quite well but understand very little. Conversely, someone may not be able to communicate but may have a very good understanding, including things being said about or around them. Dysphasic or dysarthric patients may appear to be unable to understand when actually their difficulty is in expressing themselves.

So, how can we improve our communication?

Minimise fear and anxiety

Communicating and understanding become more challenging when there is fear and anxiety. The first step is to keep calm and reassure the patient. The specific nature of any communication difficulty needs to be recognised quickly then addressed. Patients with a learning disability may not understand what is happening so careful explanations may help. Some autistic patients may have difficulty interpreting information verbally or non-verbally, or they may have significant sensory processing difficulties which means that loud noises, bright lights and physical touch can be distressing or even painful. Deaf patients may be able to better understand if they can see the clinician’s mouth – difficult with PPE.

Make simple adjustments

Communication might be made easier with simple changes such as speaking slowly and clearly and avoiding jargon. And give time – time for your patient to respond. For some patients, including those with Down syndrome, it can take several seconds to respond – time to receive the auditory information, decode it, understand it, formulate an answer and produce that answer as the right set of noises. We’re all busy so that seven or eight seconds can feel like an age. It’s absolutely worth the wait, though.

Adapt the environment

Can we do anything to make the environment less distracting, quieter, less stimulating? Would it be better to assess the patient in familiar surroundings rather than in the ambulance? Can noisy, scary or flashing equipment be switched off, removed or covered? If the patient has to be moved can they bring something, or someone, familiar with them?

Pay attention to non-verbal communication

Would eye contact help? It often does, but for some autistic patients it can be distressing. Some people respond well to a reassuring touch (I’m a toucher and a hugger) but others find it really uncomfortable – check before extending that hand! Do we need to support our verbal communication with gesture or sign? Pictures or symbols might help to explain what we are saying, but if we don’t have any to hand then pointing to body parts or pieces of equipment can help. We absolutely need to pay attention to our non-verbal communication, body language, posture, facial expression and so on, and also watch for non-verbal cues from our patient. Those who know our patient best might be able to help with this – how would their loved one usually let someone know they were in pain, for example? Pain is often poorly assessed and managed in people with a learning disability (LeDeR – the Learning Disability Mortality Review Programme). We often hear about people having a “high pain threshold” and whilst it’s true that pain is perceived differently by different people, we can’t assume that someone does not feel pain just because they can’t verbalise it.

Play to your patient’s communication strengths

Some patients may have particular strengths and weaknesses when it comes to communication. People with Down syndrome often find it more difficult to understand and remember auditory information, due to a variety of issues including fluctuating hearing impairment and poor short term auditory memory. They may, however, find it much easier to remember and understand information presented in a visual format. Using gesture, sign language (such as Makaton), photos or symbols (such as PECS) may support the verbal information and make things much easier for both the patient and the clinician.

Family and carers can help to identify how best to communicate with the patient but consider other resources too – is there a hospital passport that can give you some clues? These are often used to list medications and past medical history, but their real beauty is in detailing likes, dislikes, behaviours associated with pain, interventions that might be difficult to tolerate, and so on. A care pathway can also give great clinical information and guide management.

Adapt your examination

Your standard examination might need to be altered a little. Give clear warnings before touching the patient, particularly if they have any visual impairment or a sensory processing disorder. Start with those parts of the examination that are less intrusive – watching and observing position, demeanour, breathing pattern, and movements can all give a huge amount of information before you even get your stethoscope out. Distraction might be useful for some patients but for others, including those who may have had previous bad experiences, it might not work. Family and carers may know how best to support your patient through the more distressing parts of the examination and any following interventions.

LeDeR has also found that early warning scores were less likely to be calculated in people with a learning disability, and they were less likely to be acted on if abnormal. There are many likely reasons behind this, including clinicians being reluctant to cause distress to their patients. Things like blood pressure or oxygen saturation measurement can be very uncomfortable, particularly for those who may not understand what is being done or who may have sensory processing difficulties. Those patients still need to be assessed and treated appropriately. If a BP or sats, or any other part of your assessment for that matter, is likely to give important information then it should be done. There may, however, need to be some thought about how best to carry it out. Explanation, communication, visual information, distraction – what will help your patient tolerate the examination?

There is a common misconception that patients with chronic health problems always have an abnormal early warning score, so what’s the point? Any score, normal or abnormal, in a previously healthy patient or not, should be taken in context with the rest of the examination. It can be helpful to know what the patient is like (behaviour, level of alertness, comfort, interaction, early warning score) when well, to help to identify how ill they may be now. Again, family and carers can give vital information about this.

Be attuned to “soft signs”

“Soft signs” can help, too. These are things that family might notice long before health professionals. They are not specific to any particular illness or disease process, but give an indication that the patient isn’t well. For example, someone might be a little paler than usual, not want to get out of bed, not want to finish their favourite meal and not want to watch their favourite TV programme. A family member would know that these things mean their loved one is not themselves, and likely to be unwell. Healthcare professionals can learn a lot by listening out for soft signs.

Beware diagnostic overshadowing

It’s really important to watch out for diagnostic overshadowing. This happens when a patient has a pre-existing diagnosis, and any new symptoms are assumed to be down to this diagnosis. For example, an autistic person might present as being quite agitated, carrying out repetitive, stereotypical movements and it might be tempting for us to assume that this is all because they have autism. However, if we do that, we may miss the fact that they are in pain or feeling unwell. Again, we have to find out more about what our patient is like when they are well, to know how ill they may be now.

All of this boils down to making reasonable adjustments, which are required by law (Equality Act 2010). We can sum it up with the TEACH mnemonic:

Time: assessing someone with communication difficulties may take more time, but that time is absolutely worth it.

Environment: pick the best environment to assess your patient in. Keep things quiet and calm, remove distractions. Keep things familiar to the patient if you can, or let them have something familiar with them.

Assume: don’t assume anything about understanding – communication aids understanding, but someone who has difficulties with communication may still have very good understanding.

Communication: how can you best communicate with your patient? How can you help them make themselves understood? Would symbols or signs help? Pictures or gesture? Writing things down?

Help: what help does your patient need? What help do you need??

None of the interventions suggested are particularly tricky or difficult, but all have the potential to make a huge difference to our patients. For those working in UK ambulance services, the JRCALC guideline chapter will hopefully help as a prompt. For others, whether pre-hospital or not, I hope this blog helps a little.

https://www.jrcalc.org.uk

https://www.bristol.ac.uk/sps/leder/

Treating big people (adults) with COVID…

Cite this article as:
Vicki Currie. Treating big people (adults) with COVID…, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.32313

Reflections from a Paediatric Registrar

‘I won’t touch the feet- I’ll do ANYTHING else’. Avoiding adult feet was one of the reasons I chose a career in paediatrics was one of my responses when I found out that the PICU I was working in was being converted to an adult COVID ITU. I chose paediatrics as a career for so many other reasons, but this was the first thing that popped into my head. 

The world has been turned upside down by this pesky virus.If one year ago you would have told me that I would be looking after adult ITU patients with this new disease I would have refused to believe it. For so many, working lives have changed, roles have been adapted or learnt at lightning speed and working outside your ‘comfort zone’ has become part of the ‘new normal’. 

After a few weeks of looking after adult COVID ITU patients on a PICU I have had some time to reflect on how different things have been. Some things will change my practice forever, some of the big differences in ways of working between those looking after big and littler people. As a general paediatrician doing a stint on PICU, intensive care was new but the steep learning curve after 6 years of looking after ‘littler people’ was even steeper. 

After working closely with adult ITU team members for the last few weeks, we have had a chance to see how each other works. It has proven an opportunity to learn form each other. There are a lot of similarities, and a few differences. There are also some things which both sides can hopefully take forward into our future practice. 

Handover

As paediatricians we LOVE a handover- in some places I have worked it can feel like handovers take over the entire day. One of the biggest differences is the way the adult team do handover.  It seems so much more business-like – especially at the end of a nightshift. There’s no messing around. Any issues? Who is stable or not\? Salient points only. The paediatrician’s in the room added their own twists ‘Had the family been updated? What had they eaten today? What did their poo look like? And how had they slept?’

After a few weeks a happy medium had been found. There was a nice balance achieved between getting the night team off on time, and reducing information that could be found out easily on the morning round whilst including some of the more holistic aspects of care.

Communication with relatives and patients

Those who look after children are used to having to flip between conversing with patient and family. This is a great advantage. We are constantly thinking about updating relatives and keeping family informed. Using FaceTime allowed us to communicate with relatives. They could see their loved ones when they could not be with them. 

The adult team, who have had much more practice with the difficult conversations, seemed to be so slick, having the same realistic and honest conversations. It was business-like and well-rehearsed. Delivering the information succinctly meant that time could be spent talking to more families. 

Patients told me that the way medical and nursing staff spoke with them was different when they made the move to the PICU. Many patients told me that they could tell we were used to dealing with children. The way we spoke was cheery, informal, and most importantly, personal.  I wonder if this was always what they wanted though, especially when delivering difficult news. With the help of the adult ITU team, a delicate balance was maintained. 

Attachment

The adults with COVID in the ITU seem to be long- stayers.Having the same set of patients for a few weeks is great in some ways; and hard in others. Often, with PICU patients, there can be prolonged stays but one of the things the adult team found hard was the attachment they formed to their patients  from seeing them shift after shift. Couple this with the need to look after so many patients on adult ITU , whilst rotating through different pods. On PICU it was one area with the same patients.

On the plus side, you knew the patients REALLY well. You understood things in detail things, like what ventilation strategies they responded to- or didn’t. You knew what previous infections they had been treated for and you knew what families had been told. The downside: you became more attached. It was harder, emotionally, when a patient you knew deteriorated or didn’t better. I wonder if we carry more of an emotional burden in paediatrics because of this. Any doctor will get emotionally attached to certain patients. But are we more likely to do so by seeing fewer patients but more often than our adult counterparts? 

Teamwork

Without question, the amazing paediatric ITU nurses stepped up to the challenge of looking after grown-ups. The incredible camaraderie, between nursing staff, paediatric doctors and the adult ITU team, proning the most unwell patient at 2 in the morning is something which should be bottled up and stored for reuse when this is all done. Truly working together to pull, not only the patients but also each other through the difficult shifts. 

The adult ITU team helped whenever they were needed. They supported us and also credited us paediatricians on many occasions for out strict attention to detail – with anything from charting blood results to charting fluid balances. 

This has been an eye-opening experience. It has been challenging, terrifying, devastating at times. It has also provided opportunities to work with amazing colleagues and witness teamwork between medical and nursing staff like never before. It has been a unique opportunity for adult and paediatric teams to work side by side and siphon bits of each other’s practices. 

As for the feet- it wasn’t as bad as I expected- but I drew the line at a request for a foot massage!

An excellent resource for those working on the front line who are struggling or just looking for that little bit of extra support…

https://www.rcpch.ac.uk/key-topics/your-wellbeing-during-covid-19-pandemic