Uterine (decidual) Casts

Cite this article as:
Tara George. Uterine (decidual) Casts, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.32416

Lucy, 15, arrives in the ED sobbing hysterically clutching a wad of toilet paper. “I thought it was my period… only I had the worst period pains ever. I went to bed with a hot water bottle and it got worse and then… this came out”. She sobs, opening the tissue to show you a fleshy, pale triangular thing. approximately 5cm long.  “What is it? It’s disgusting. Have I got cancer? I’m not pregnant am I?”

Bodily secretions in tissues are rarely a source of delight but are common opening gambits. Vomit, faeces, sputum, vaginal discharge, worms, lice, blood clots and products of conception may be saved up and brought to the doctor to add colour to the history.    They present a challenge as often we don’t want to look. We don’t trust ourselves not to recoil or be disturbed and being presented with a “sample” early on can catch us off guard. It plays havoc with the “history, examination, management plan” structure we like to impose on our consultations.  In presentation terms, though, this is a gem of a presentation. We have an “Idea”, a “Concern” and it won’t be long before we elicit an “Expectation”.  Avoiding the enormous cue as it is thrust into your orbit, whilst tempting, risks dismissing the concerns. This can destroy any fledgling rapport and make the whole encounter even harder.  It is going to be necessary to take a history, but right now we have a distressed teenager, an unidentified object in a tissue and a lot of emotion. It may well be easiest to address this gift up front and just take a look. This is the time address the upset and the fear head on.

The “thing” looks like this:

A uterine or decidual cast occurs when the entire endometrial lining is shed in one piece. They are uncommon but frequently cause distress to the patient and can be extremely painful to pass.  A cast looks almost triangular in shape and if shed whole you can see the contours of the uterine cavity in a sort of fleshy model if you look closely.

Lucy tells you she had a Nexplanon contraceptive implant fitted about 6 weeks ago. She is not currently sexually active.  Her last period started the day before she had her implant fitted. She’s well otherwise with no past medical history. She had some light PV spotting yesterday and this morning but it has been light.  Since she passed the mass her pain has settled completely. Her observations are normal. She is happy to do a pregnancy test which is negative.  She just wants to know what it was, why it happened and if she can go home now.

The vast majority of uterine casts have no identifiable precipitating causes though there are case reports in association with Ectopic Pregnancy and they may be slightly more common in users of Hormonal Contraception though having had a cast is not a contraindication for continued use, nor are recurrent casts likely with continued use. The pain associated with passage of the cast is often severe – remember they are passing a 5cm mass through their cervix.

You reassure Lucy that this is not cancer, that she wasn’t pregnant and that this was a cast.  You explain what a cast is and that it is unlikely to recur.  She goes home much reassured and relieved.

You decide to send the cast to the lab for histology and a few days later a report lands in your in-tray which reads extensively decidualized endometrial tissue with minimal glandular structures lined by low cuboidal epithelium, consistent with a uterine or decidual cast. No chorionic villi were identified.

References

Nunes, R.D. and Pissetti, V.C., 2015. Membranous Dysmenorrhea–Case Report. Obstet Gynecol Cases Rev2, p.042.

Strauss, L., 2018. Fleshy Mass Passed Vaginally by a Young Woman. American family physician98(7), pp.449-450.

Forget the Bubbles? Never

Cite this article as:
Neelakshi Ghosh. Forget the Bubbles? Never, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.32252

How did we feel when we were told to ‘Forget the bubbles’ and infection control policies binned those slippery soapy solutions and golden rings of plastic? COVID-19 led to innovations in the workplace and we changed practice almost overnight to ensure the safest care was being delivered to our patients. Perhaps the team that demonstrated this to the fullest are the play specialists.

A chat with Maxine Ovens, Play Service Manager at the Royal Brompton Hospital showcased stories of innovation coupled with cycles of constant evolution as the team adjusted to a different way of life. Before COVID-19, Maxine had been the playroom boss for 16 years. She startied with a team of just 2 and is now running a 7-day service with 9 team members.

They have been working on the ward, and in children’s outpatients, supporting not just children and young people, but also their families, ‘to make their hospital experience positive and productive. During the initial surge of the pandemic, PICU beds at the Royal Brompton were allotted to adult ITU services. The playroom on the children’s ward became the storeroom for paediatric equipment as the original storeroom now fell in the ‘red zone’. Play had to be put back on the shelf and staff redeployed. Maxine’s aim was to ‘stay as a team and not be broken up during these difficult times’. The play specialists volunteered at the donning and doffing station at the PICU and actively engaged in boosting staff morale.

Behind the scenes, Maxine continued to push for restoring the playroom services. Working closely with the Infection Control team, she drafted new ‘playroom guidelines’ keeping with national policies and social distancing norms. With relatively fewer admissions, Maxine could arrange for one-to-one play sessions for everyone. These were time-tabled on a daily basis by the play team. The main focus was on the daily cleaning schedule with particular members allotted to be in-charge. All surfaces and toys were cleaned with Chloro-clean solution at the beginning of the day and in between play sessions. All members maintained the daily cleaning logs strictly, signing out for toys used in each session and putting them back after a thorough clean. ‘This was not just to demonstrate to Infection Control that the playroom is hazard-free, but also to reassure parents and carers that it is safe for the children.’ The staff were commended by parents for the clean environment of the playroom. One parent mentioned that ‘such varied activities were not possible even at home with all the recommended hygiene measures’.  And Maxine would quietly remind us of the marathon clean up the team had to do when a young patient decided to start a bit of ‘slime fight’ during a slime time session. Children on respiratory support had their playroom time towards the end of the day. Aerosol generating procedures required the playroom to be closed for an hour after.

Toys and playthings have to be compliant with the new cleaning regime. Staff members laminated books for bed-time stories before cleaning and returning them every day. The Brompton Fountain Charity donated single-use activity packs and colouring sets. Cardboard boxes for the board games were discarded, and playing cards were laminated and stored in plastic containers. All effort was made to ensure traditional play tools were not missed in this ‘new normal’. And, of course, plastic bubble machines appeared on the shelves to replace the old stand by.

Play is about innovation. Just as children grow and learn to explore their environment through play, Maxine and her team invented Covid-safe ‘things to do’. Group play was put on hold. The team used this opportunity to engage more children in one-to-one sessions, exploring their unique ideas. When admission rates started picking up, ‘bay bubbles’ were created so that two children from the same bay could be in the playroom together, using time and space more effectively. Children were engaged in activities like biscuit icing so that they could keep their creations for themselves rather than handing over the products of their labour for cleaning. Over the Christmas period, children made decorations which were then laminated by the team and hung on the ward.

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But to Maxine, the biggest challenge was the PPE. During bedside sessions, the team had to adhere to guidelines which made play a little more clinical than they would like. Visors were donned with cut-out tiaras and Mickey Mouse ears. Badges were pinned to uniforms bearing the photo of team members. The smile behind the mask had to be seen. There were picture books of health care staff in PPE explaining to children the new ‘superhero costumes’. The play team helped prepare the young patients for a procedure before junior doctors walked in donned.

So, what does hospital play look like now? Her team has always been creative with new and innovative ideas catering to the varied interests and abilities of her young patients. They have been constantly evolving as a team and will continue to do so.

Take every opportunity to be creative and be flexible. Play doesn’t need to stop. Fight for your service and work closely with the teams that can support you. After all, we all need a little play in our lives.’

Maxine Ovens

A journey to remember

Cite this article as:
Viv Forde and Owen Keane. A journey to remember, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.32101

Imagine yourself on a stretcher rolling away from your home, out of your driveway. BUMP onto a ramp, then pushed from the ramp into the back of an ambulance. Hear the sound of the stretcher being locked in place, and all you can see is the white ceiling and bright lights. BANG! The door slams after you. You look around and see machines you do not recognise with no understanding as to what they do. They look scary, some of them BEEP, and you are sick and in pain. For any adult, this is daunting.

Now imagine that you are a 5-year-old child. What would be going through your mind?

The back of an ambulance must be one of the scariest environments a child could encounter. As prehospital practitioners, assessing and treating children in this environment is a huge challenge. Seeing a distressed child, sick and in pain, is daunting. Trying to treat their ailments and instil some calm, even more so. How do we do this? How can we do it well…. or better? What is available to us to make this easier and how can we improvise to improve the patient experience for the ones we want to mind the most?

The Bumbleance

In Ireland, we have an amazing dedicated paediatric transfer ambulance service, designed inside and out with nothing but kids in mind. The Bumbleance Children’s National Ambulance Service operates vehicles equipped with social media streaming, wi-fi, PlayStation, DVDs, games, books, colouring, sensory lighting, Netflix, iPad Air, Beats headphones, Apple TV and Apple Music…providing endless entertainment for the kids that require transfer and minimising the potential impact of clinical care on their journey. While these phenomenal assets are used for scheduled trips and appointments, these features are not in the frontline Emergency Ambulances.

Without reliable access to fun electronic gadgets and gizmos, Emergency pre-hospital practitioners rely more on the fundamentals of paediatric care to maximise their comfort during the call and transfer – getting down to their level to communicate, utilising effective distraction techniques, optimising pain management and using appropriate positioning (with the help of Mum and Dad) are always good places to start.

How about…

Glove Puppets

Straight from the “International Paramedic Practice of Improvisation”! Some creative practitioners have been known to use ECG dots as eyes. Simple and easy and the kids seem to love them. Plenty of evidence out there to support it too.

Bubbles

Don’t forget” these! We are excellent at ensuring we have our clinical stock checked for each and every shift, but should we have paediatric play / distraction gear checked too? Some astute crews keep bottles of bubbles in their kit bags for the distressed paediatric patients they encounter. Deescalating an upset child, while gaining trust and instilling a fun memory, can add in no small way to positive case outcomes. Importantly, play stimulates and assesses the patient’s level of interaction – what is their level of alertness and are their reacting normally? Now they want to play – excellent, they are obeying commands and blow bubbles just like you do too!

Smartphones

Many practitioners use their devices to pacify patients during the initial assessment, treatments, and transferring onwards to the ED. Having a spare charger for your shift is a good idea. Be up to speed on the latest hit shows, know some characters by name and description, and expect serious brownie points for being able to mimic the voice of their favourite character!

A Bear called Teddy

Another paediatric kit bag essential? An excellent source of comfort and reward for bravery. Where possible and appropriate, be sure to show them how to check Teddy’s oxygen saturations, auscultate his chest, and check his blood sugar level… desensitisation to the experience of clinical assessment, while reducing anticipatory anxiety, can allow you to examine your paediatric patient more thoroughly and pick up subtle objective signs.

Blood Sugars

It might be an idea that whoever is driving on the day are the one to carry out the fingerprick glucose test. This way the child doesn’t have to be in their company immediately afterwards and so it is usually forgotten about by the time they arrive in the ED. Novelty cartoon or superhero plasters will be the most welcome addition to any paediatric kit bag.

Openness and honesty are key in assessing and managing a child. Communication breakdowns lead to loss of trust and a worsening of pain and distress during the prehospital phase of care. Be clear about what you would like to do and what this will involve. This will make them feel better once it’s over. Expect trust to evaporate if you tell them a painful procedure won’t hurt. Use any teddy or toy props available to demonstrate if you can and demystify the process by involving the patient.  Lever off parents as and guide them, when needed, to improve your chances of completing a vital clinical task.

Of course, parental anxiety will increase a child’s anxiety. While having them accompany their child in the ambulance is a legal requirement, treating the parent is just as important as treating the paediatric patient themselves. This might be their first time dialling 999/000, their first sick or injured child, or their first time encountering prehospital services. Be conscious that separation may cause great anxiety, keep them in the eyesight of the patient as much as possible. Encourage the carer to keep talking, telling stories, or singing songs. Providing the best possible care is depends on providing adequate emotional support for an unwell child. These core principles are particularly important to remember in cases involving serious paediatric traumatic injury. Minimising distress can have a huge impact on post-event emotional recovery.

While we are very lucky in Ireland to have an impressive number of medications available to both paramedics and advanced paramedics, non-pharmacological means of providing analgesia to patients should not be underestimated. Managing the prehospital phase of care in a safe, fun, and efficient manner will undoubtedly improve the chances of the journey to the ED, and beyond, going much more smoothly.

Pre-hospital paediatric challenges during COVID-19

Managing unwell or injured children in the prehospital environment was plenty challenging before the COVID-19 pandemic.  Adding PPE into the mix has represented a significant challenge to all healthcare providers and prompted reflection on communication and distraction techniques alike.  The introduction of a facemask, goggles, gown and gloves as contact precautions, has made many adult patients feel uncomfortable. This new work outfit doesn’t lend itself to creating less distress amongst kids either. PPE greatly restricts our ability to communicate with children, removing our core non-verbal expressions, that friendly smile or silly excited face, that we relied on so much before.

How can we tackle this as prehospital practitioners to ease the anxiety that our PPE may cause? Maybe the following points could help in mitigating this problem:

Say it like you mean it

We need to rely and focus more on how we speak to the child by keeping our voice friendly and using our tone, pitch and intonation more to convey excitement. How your message is heard might be different when wearing goggles vs visor so do test this out on a colleague and get feedback when trying out different PPE.

Smile with your eyes

Again, practice makes perfect! This can be difficult if your eye protection keeps fogging but being aware of it will help you anticipate and adjust your strategy as needed.

Show yourself at your best

Perhaps having a printout of a picture pinned to your PPE might help. At least the child will know what you really look like. A mini collection of silly faces would be ideal of course.

It is still Halloween, right?!

Costume wear is now a year-round thing, apparently. This has gotten a few laughs and a few eyerolls too for good measure. Any form of icebreaker that works is a good one!

Cartoon Visors

Creating memories while providing care. Some paediatric departments have sourced visors with cartoon characters and animals on them. Others have taken to showing off their creative side! It has shown to comfort the children and promoted good interactions whilst the healthcare workers go about their job assessing and treating their patient. Prizes should be encouraged for champion efforts!

Creating magical memories while providing excellent prehospital care is achievable with good preparation and acknowledgement of the unique elements involved in transporting the distressed, sick, or injured child.

The journey really does make the destination!

References

Oulasvirta J, Pirneskoski J, Harve-Rytsala H, Laaperi M, Kuitunen M, Kuisma M, et al. Paediatric prehospital emergencies and restrictions during the Covid-19 pandemic: a population-based study. BMJ Paediatrics Open. 2020;4:1-8.

Cowley A, Durge N. The impact of parental accompaniment in paediatric trauma: a helicopter emergency medical service (HEMS) perspective. Scand J Trauma Resusc Emerg Med. 2014;22:32.

Samuel MD N, Steiner IP, Shavit MD I. Prehospital pain management of injured children: a systemic review of current evidence. American Journal of Emergency Medicine. 2014.

Jones J. Analgesia for Acute Care. Children’s Hospital Ireland; 2019. p. 5.

StatPearls. 2020. https://www.ncbi.nlm.nih.gov/pubmed/32119430

Cartoon visors cheer young patients hse.ie2020 [Available from: https://www.hse.ie/eng/about/our-health-service/making-it-better/cartoon-visors-cheer-young-patients.html.

Bumbleance – The Children’s National Ambulance Service 2020 [Available from: https://www.bumbleance.com/?doing_wp_cron=1611411187.1207330226898193359375.

Fogarty E, Dunning E, Koe S, et al. The ‘Jedward’ versus the ‘Mohawk’: a prospective study on a paediatric distraction technique. Emergency Medicine Journal 2014;31:327-328.

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

Breaking bad news

Cite this article as:
Sarah Kapur. Breaking bad news, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.31906

You are admitting a 13-year-old girl, Fatima with a history of easy bleeding and bruising, a full blood count has been performed and shows pancytopenia with blasts cells seen on blood film.  The parents had been waiting in ED for 7 hours and the nursing staff tell you they are very angry at being admitted as no one has explained why they have to stay.  They have a 3-month-old baby who Mum is breastfeeding.  The family are asylum seekers from Libya and mum speaks some English, but the dad doesn’t speak any English.

When on rotation in haematology 2 years later, you meet the same family in the outpatient clinic for review, unfortunately, Fatima’s leukaemia has relapsed and the team looking after her have told them that a cure is not possible.  

This case highlights communication when breaking bad news about a new oncological diagnosis, however the skills and themes discussed are relevant to many specialities and scenarios.

Bad news has been defined as any information that negatively alters a patients view of their future (Buckmann, 1984).   All bad news has serious consequence for a family.  As paediatricians, we must explain many life-changing diagnoses to children and their parents; from a new diagnosis of diabetes, a neuromuscular condition or an autistic spectrum disorder.  Changes in management can also be bad news for that child or family, for example, a neonate who may require a tracheostomy or a child diagnosed with an unsafe swallow who cannot be fed by mouth.

We have to skillfully navigate the triangular relationship between healthcare professional, parent and child.  Timely, open and honest communication is key and families report that this is especially important for conditions with extremely poor prognosis. 

Bad news is always bad news for the family, however, how we deliver it can make a drastic difference to the family and the therapeutic relationship they have developed with the healthcare professionals caring for them and their child.  That bad news may be the start of the doctor-patient relationship, making it important to be honest, in order to build a trusting relationship.  Being honest whilst maintaining hope requires delicate balance.  

The SPIKES model

The SPIKES model has been proposed to give us a framework for discussing bad news with families. (The oncologist, 2000). This framework can help us to structure the conversation and think about issues that may arise.

It begins by setting up the interview.  The need for preparation is paramount, gathering as much information as possible and ensuring that the conversation will not be interrupted.  Many parents stress that diagnostic uncertainty shouldn’t delay important conversations and that we should be honest about what we do not know. 

Think about what you want to say in advance. Think about how you can explain medical terminology in simple terms or whether there are any diagrams or pictures that might help. If any scan pictures are available, these also can be helpful in explaining a diagnosis, although be mindful that some families may not want to see these early on.

If a family need to come up to an outpatient clinic for review, try to be flexible to ensure that both parents can be there. Stressful events can strain already tricky family dynamics so consider this with parents who are separated or who have limited support. They may have jobs that are difficult to get time off from, other children to arrange childcare for, other caring commitments or difficulty with travel. Other family members such as grandparents, aunties or uncles may provide invaluable support.

These conversations can take time and in busy clinical environments this can be tricky.  Whilst it is important not to unnecessarily delay difficult conversations it is also essential that you allow enough time so that the child and family do not feel rushed.  Choosing the right environment would involve a place that allows privacy, has enough chairs and ensuring that you are not carrying any bleeps or expecting important phone calls.  When to involve the child in the discussion is difficult and very age dependent.  It is often appropriate to have a relative or member of staff sit with the child initially and then have subsequent conversations with the child.  These conversations are obviously very difficult but for older children it is important that they understand what is happening in an age appropriate manner.  Charities particular to the condition being discussed often have excellent resources to explain complex diagnoses, or provide story books for children or their siblings.

Open the conversation with introductions, including names and roles, bearing in mind that names are easily forgotten, so an easily visible name badge is helpful.  Kindness and empathy are 2 key principles in developing rapport with the family.  Asking the parents their names and using their names and the child’s name can also help build rapport with the family.

Begin with open-ended questions, to assess the family’s understanding and perceptions of what might be going on.  This can be very different to what you may expect and may help in your explanations of the situation.

The next step in the SPIKE model is obtaining patients invitation i.e. getting an understanding of what they want to know.  This is slightly controversial, as we must also ensure that families are informed about all aspects of care.  However, for initial conversations it could be best not to overload with information.  Giving a warning such as ‘we wish we didn’t have to tell you’ before breaking the news is advised.

After the news has been broken, do not be afraid of silence, you must give the patient time to process what they have heard.  After the initial news has been broken, give more information on the condition and explanations of what will happen next and reassurance of ongoing support.  Be open about uncertainties if the diagnosis is not your area of speciality but be clear about how questions can be answered.  Give further information in chunks checking understanding of complex medical terminology to help develop family’s understanding of complex scenarios.  If news is related to life limiting conditions statements such as ‘we are unable to cure your child (use name) but we will always care for them can be helpful.  

Listening to what the family is saying and do not make assumptions about how they are going to feel.  Be careful to really observe and validate their emotions, using empathetic language to respond to emotion rather than facts. No response from the family is wrong.  Taking conversations at the individuals pace, bearing in mind 2 parents understanding may differ drastically.  

Understanding their previous experiences and understanding of the condition can be very insightful, for example the grandmothers diagnosis of breast cancer is different to his child’s diagnosis of leukaemia.

Think about other family members and what to do when the consultation has ended, some parents report not feeling safe to drive after hearing bad news.  Offering a few minutes in a quiet room after the conversation may be appropriate.  Ask about other siblings and close family members.  Offer support and advice about telling siblings, the child themselves or grandparents. Charitable organisations related to the condition often have excellent resources around this.

Finish by summarising  the information that has been given, provide written information and website links and importantly follow up plans.

A lot of families will do internet searches on the condition, and whilst this can be helpful, it sometimes isn’t.  It is helpful to acknowledge this and encourage families to discuss any information they find to be confusing or contradictory to medical advice.

Encourage families to write down questions for meetings.  Explain that it is normal not to remember a lot of what has been said and that it is important to ask questions to develop their understanding.  

Reassurance of ongoing support is paramount, this support may be from medical, nursing or allied health care professionals.  Parent groups and charities often have excellent information leaflets and support groups. Ensure families know they are not alone and how to access support.

As clinicians we must recognising that doing this well is emotionally and physically draining and be sure to look after our own wellbeing and take time to debrief with the team after if appropriate.

Selected references 

1. Brouwer, M.A., Maeckelberghe, E.L., van der Heide, A., Hein, I.M. and Verhagen, E.A., 2020. Breaking bad news: what parents would like you to know. Archives of Disease in Childhood.

2. Baile, W.F., Buckman, R., Lenzi, R., Glober, G., Beale, E.A. and Kudelka, A.P., 2000. SPIKES—a six‐step protocol for delivering bad news: application to the patient with cancer. The oncologist5(4), pp.302-311.

3. Together for short lives. Core Care pathway. https://www.togetherforshortlives.org.uk/resource/core-care-pathway/

4. Children’s Cancer and Leukaemia group.  https://www.cclg.org.uk

What’s in a name?

Cite this article as:
Alex Gibbs. What’s in a name?, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.32037

Rightly or wrongly, stereotyping is engrained in physicians from when they start medical school. Consider the classic medical exam questions regarding a South Asian gentleman with a cough. Students are almost conditioned to start recalling their knowledge of tuberculosis before they have even finished reading the question. Stereotyping saves lives. Following Occam’s razor of common things being common means that a patient attending A&E with fever and hypotension is likely to receive potentially life-saving antibiotics even before rarer diagnoses have been excluded. However, one of the toughest skills of being a doctor is recognising when our conditioned stereotypes are hindering our ability to provide good care. 

Race and health are often linked. This might be to illustrate the varying prevalences of different diseases within different ethnic groups. Occasionally, treatment for a certain disease will vary by the patient’s ethnicity (such as choice of anti-hypertensive in the under 55s). Nevertheless, Covid-19 has demonstrated that not all generalisations based on race and disease are valid. In the first few weeks of the pandemic, when it was first realised that ethnic minorities in the UK and USA seemed to be much more likely to die from the disease, speculation regarding genetic susceptibility to the novel virus was rife. Yet ultimately, as is often the case, it appears that socio-economic factors, rather than genetics, explain these tragic differences. 

Yet sickle cell disease is one condition where there is undoubtedly a correlation between ethnicity and the likelihood of having the disease. Sickle cell disease (SCD) is caused by a mutation on the eleventh chromosome, affecting the gene that codes for one of the protein molecules in haemoglobin. The results of this mutation are abnormally ‘sickle-shaped’ red blood cells which cause an array of complications: from episodes of vaso-occlusive crisis (severe pain due to restricted blood flow to different parts of the body); strokes; anaemia and splenic infarction leading to infection susceptibility. The life expectancy of a baby born in the UK with sickle cell disease is less than 60 years. In order to have sickle cell disease, a child must inherit a mutated copy of the gene from each of their parents. Inheriting just one copy of the mutated gene has been shown to be protective against malarial infection. This selective advantage has meant that the sickle cell trait gene remains prevalent in areas of the world where malaria is endemic, most notably in Sub-Saharan Africa. Consequently, the vast majority of people with SCD are of African origin.

Until I began working as a doctor, I had only a biochemical view of sickle cell disease. I had learned about the genetics behind the disease and how these manifest as symptoms. However, as my medical school was in a predominantly white area of the UK, I encountered very few patients with SCD during my clinical placements. I did not regularly care for patients with sickle cell until I started to work in London, a couple of years after I had graduated from medical school. What struck me then was the negative attitude that some of my medical colleagues exhibited towards patients that we encountered with the disease. Patients with SCD most commonly presented to hospital complaining of severe pain due to vaso-occlusive crisis. Despite the clearly established pathology that explained their presentation, I found that many of my colleagues would question whether the patients were really in as much pain as they claimed. Strong analgesia would be prescribed reluctantly and often only after delay and discussion about ‘opioid seeking behaviour’. This is where I was first introduced to the term ‘sickler’.

A ‘sickler’ is a patient with sickle cell disease. It is often used in discussion between medical professionals as a faster way of saying ‘a patient with sickle cell disease’. Patients with SCD, like any other patient group with a chronic, incurable condition, can be difficult to manage. Seeing a patient return multiple times to A&E with the same complaint is frustrating for any clinician who takes satisfaction in curing their patient’s ailments. Sadly, SCD is something that cannot be ‘cured’. Patients have to live their lives knowing that the next painful vaso-occlusive crisis could occur at any moment. As is often the case with people who unfortunately have had to grow up in and out of hospital, a significant number of patients with SCD have behavioural or mental health issues that add to the challenges of managing their condition. Yet I did not see doctors show the same level of frustration towards patients suffering from other chronic conditions that often led to similar mental health problems; such as patients with type 1 diabetes, childhood cancers or inflammatory bowel disease.

In a 2013 study by Glassberg et al1, 655 Emergency Medicine physicians were surveyed on their use of the term ‘sickler’, their attitudes towards patients with SCD and the frequency with which the physicians adhered to evidence-based guidelines when providing analgesia to patients presenting in vaso-occlusive crisis. It was found that doctors using the term ‘sickler’ were more likely to harbour negative attitudes towards patients with SCD. 50% of the physicians surveyed admitted to using the term ‘sickler’ either “frequently” or “always”. Within the group of physicians who “frequently” used the term ‘sickler’, there was a statistically significant reduction in adherence to evidence-based guidelines when managing vaso-occlusive crisis pain, compared to those physicians who either “rarely” or “never” used the term ‘sickler’. A further study found a similar association; medical practitioners with negative attitudes towards individuals with SCD displayed lower adherence to treatment guidelines for managing vaso-occlusive crisis2. A 2010 study carried out in Chicago3 found that patients attending the emergency department in vaso-occlusive crisis were having to wait for an average of 80 minutes for analgesia, 30 minutes longer than the average wait time for patients presenting to the same department complaining of renal colic; despite the fact that patients in vaso-occlusive crisis reported higher average pain scores on arrival to the department than those with renal colic. In a 2020 survey of patients with SCD, two-thirds of respondents reported that they had delayed attending an emergency department for care during a vaso-occlusive crisis because of previous negative healthcare experiences and stigma around their disease4. However, it is not just on the ‘shop floor’ that these negative attitudes manifest. In 2007 Solomon5 reviewed a range of medical textbooks providing educational information about analgesic treatment regimes for patients in vaso-occlusive crisis. He found that less than 40% of the books sampled noted that opioid addiction was infrequent in this population of patients. However, over 90% of the textbooks reviewed offered such assurance when discussing treatment for cancer-related pain.

I associate the term ‘sickler’ with the frustration that healthcare professionals have towards managing patients with SCD. I do not use the term ‘sickler’ and am uncomfortable when I hear my colleagues use it. Tellingly, I have never heard a medical professional use the term ‘sickler’ in front of a patient with SCD.  When I consider the reasons behind why SCD patients are stereotyped in the way that they are by healthcare professionals, I can’t help but focus on the fact that most ‘sicklers’ are black. It is much easier for someone to empathise with a condition that they can relate to. I suggest that for predominantly white physicians with predominantly white middle class family and friendship groups, it is much more difficult to empathise with a condition that affects mainly black people than a disease that could occur to either themselves or a loved one.

After the Lockdown Summer of 2020, with the re-emergence of the ‘Black Lives Matter’ movement and the introduction of the term ‘unconscious bias’ into the mainstream, it is an apt time to discuss the dangers of using the term ‘sickler’. The term trivialises what is a severe and life-limiting genetic condition. It promotes the idea that patients presenting to A&E with severe pain in vaso-occlusive crisis are opioid seeking. This has led to patients receiving delayed or inadequate care. I know that most doctors I have worked with do not consider themselves as racist. Yet when we as medical professionals, consciously or subconsciously, act upon stereotypes that we have developed in our careers, to impact negatively upon patient care; then that is a form of racism. Whilst the term ‘sickler’ continues to be used amongst healthcare professionals, the stereotypes attached to the term will propagate through to future generations of doctors and medical students. It is not racist to feel frustration at a patient with sickle cell disease that is demanding treatment. However, it is racist to allow that frustration to impact upon the treatment that that patient, or the next one, receives. 

References

1. Glassberg, J., Tanabe, P., Richardson, L. & Debaun, M. Among emergency physicians, use of the term "Sickler" is associated with negative attitudes toward people with sickle cell disease. Am. J. Hematol. 88, 532–3 (2013).

2. Glassberg, J. A. et al. Emergency provider analgesic practices and attitudes toward patients with sickle cell disease. Ann. Emerg. Med. 62, 293-302.e10 (2013).

3. Lazio, M. P. et al. A comparison of analgesic management for emergency department patients with sickle cell disease and renal colic. Clin. J. Pain 26, 199–205 (2010).

4. Abdallah, K. et al. Emergency Department Utilization for Patients Living With Sickle Cell Disease: Psychosocial Predictors of Health Care Behaviors. Ann. Emerg. Med. 76, S56–S63 (2020).

5. Solomon, L. R. Treatment and prevention of pain due to vaso-occlusive crises in adults with sickle cell disease: an educational void. Blood 111, 997–1003 (2008).

Year End 2020

Cite this article as:
Damian Roland. Year End 2020, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.31631

How do you remember the major milestones of your life? Do you divide them into significant life events such the start of secondary school or use specific decades related to your age? Perhaps you may base it on geography – where your ‘home’ was at any given time?

There is a significant chance that the COVID19 pandemic may create a new form of reference point, that of everything pre- and then post-pandemic.

It’s actually quite difficult to go back to January 2020 and imagine what you thought 2020 might be like. So much has happened in the last 12 months that expectations have perhaps been irrevocably altered; leaving the retrospectoscope even more biased than it always has been.

I can objectively demonstrate that at the beginning of the year I had some funded research I would like to publish, that I was looking forward to a number of international conferences and was already wondering how winter 2020 would pan out (feeling that we’d got lucky in 2019 which hadn’t been quite as bad as 2018). I can’t quite remember what I was expecting in relation to new interventions and developments in paediatric emergency medicine but I think, even with hindsight bias, it’s reasonable to assume that I suspected many things were likely to remain in status quo.

At the beginning of 2020 there was no reliable biomarker for identifying serious bacterial illness in sepsis (and still isn’t) and by the end of 2020 management of asthma and wheeze still remains essentially unchanged (although we know magnesium sulphate nebulisers probably don’t add much). A systemic review of the management of asthma essentially said (with all respect to the authors who are just interpreting available evidence), “more research is needed”. There have been no major practice-changing studies in the management of gastroenteritis, seizures or bronchiolitis. In fact, in many countries of the world, the less is more approach to bronchiolitis was easy to implement as the public health response to #COVID19 appeared to completely remove it as a disease entity.

What about personal plans. Did you think about what you wanted to achieve at the beginning of this year?

Do you ever?

And if not why not? Should we not have a semblance of some goals, however small and sparse of detail? Or do you argue a random calendar month, which happens to be the one Julius Caesar determined a new year should start, is a poor method with which to do this?

Pushing philosophical questions aside it’s likely that COVID19 revised, or ripped up, many individuals, departments and organisations strategies. The consequences of this aren’t clear and it may never be possible to determine overall positive or negative impact. There is a delicate balance between what has been gained that wouldn’t have normally occurred versus those critical investments and interventions which haven’t. As the DFTB review has clearly highlighted the pathophysiological consequence of COVID19 on children is limited but the wider impact is potentially extreme. Regardless of which way the overall outcomes swing appropriately responding to many enforced changes is vital. The cancellation of DFTB20 was a great sadness but at the close of DFTB: Live + Connected it was clear it is possible to generate an atmosphere of collaboration and solidarity even when participants are distanced by thousands of miles. Future DFTB conferences, whether digital OR in-person, will utilise this learning for the benefit of either medium. 

Without wishing to overlook the immense emotional trauma and financial hardship #COVID19 has had on society it is important that we all use 2020 to examine its impact on us as individuals. This will be through both our personal and professional lives. For the former, lockdown may have brought your immediate family and friends together, or it may have pushed them apart. In the latter, the utter transformation of healthcare services, both adult and children, will have altered your role in your department. This may have placed you in positions of leadership or responsibility that you have thrived in, or perhaps opened your eyes to a stale status quo, which had been implicitly tolerating without really enjoying. Every year brings the chance to reflect and grow but this year has given everyone a different lens with which to view their lives.

#COVID19 will have changed the world around you but I’d argue it is possible you may have changed more. 2020 may well be the milestone with which many new life journeys begin.

Talk ortho like a pro

Talk ortho like a pro

Cite this article as:
Orla Callender. Talk ortho like a pro, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.30463

Clear and structured communication between the emergency and orthopaedic team is paramount to ensuring a smooth transfer of care for children with fractures and traumatic injuries. Use this checklist to structure your referrals to ortho like a pro, and test your x-ray interpretation skills with the quiz below.

History

Injury is force meets child; child is damaged. Force causes an easy-to-remember event – shock, pain, ‘crack’, blood, fear – so there will always be a history of an injury. When taking a history, remember the six honest men: when, how, where, what, who and why.

In addition to a full history of presenting complaint and past medical, vaccination and developmental history, a trauma history should include:

  • Date and time of injury
  • Exact mechanism of injury when possible, preferably in parent’s or child’s own words
  • Environment in which the injury occurred
  • Symptoms at time of injury and subsequently
  • Hand dominance for upper limb injury
  • Analgesia administered
  • Fasting status
  • Relevant past medical history such as bleeding disorders

Sadly, we must always remain vigilant for signs of non-accidental injury (NAI). The presenting injury needs to reasonably fit with the account as to the mechanism of injury.

Examination

Whilst the majority of the examination of a traumatic injury is centred on the affected site, the examination must always include:

The examination should be broken down into:

  • Inspection
  • Palpation
  • Movements and gait
  • Neurovascular status
  • Special tests

Imaging

Fractures can generally be identified on an AP and lateral radiograph. Use a systematic approach and apply the rule of two’s.

Apply rule of twos:

  • Two views as standard; occasionally other views may be required
  • Two joints viewed
  • Two sides where comparison of normal is necessary
  • Two occasions before and after procedures or in specific instances (such as when a scaphoid fracture is suspected)

A fracture may appear as a lucency (black line) where a fracture results in separation of bone fragments or as a dense (white) line where fragments overlap. If bone fragments are impacted, then increased density occurs which may be the only radiological evidence that a fracture exists.

Sometimes, there is no direct evidence of a fracture and instead, we need to rely on indirect evidence. Looking for radiological soft tissue signs can provide clues to fractures. These include displacement of the elbow fat pads or the presence of a fluid level.

The AABCS approach, described by Touquet in 1995, can be used to carry out a structured interpretation of a limb x-ray.

Key points:
•   Examine the entire radiograph in detail before concentrating on the area of concern – Look at the whole x-ray and the x-ray as a whole
•   Remind yourself of mechanism of injury – Are the radiographic findings relevant to patient history? How do the findings correlate with clinical findings? Do you need to re-examine the patient?
•   Take an x-ray before and after procedures
•   Get help – If the x-ray doesn’t look right ask someone else, and ensure there is a backup reporting system in place
•   Document both what you see and what you don’t see on the x-ray

Describing fractures

Fractures are described systematically. Start with the site (name and part/portion of bone), then extent (fracture type/line, open/closed, articular involvement), then describe the distal fragment (displacement and angulation). Describe any involvement of the skin and damage to related tendons and structures such as nerves or blood vessels.

Describing the site

Long bones are often described based on thirds: proximal, middle (diaphyseal) and distal segment. Including nearby anatomical landmarks (head, neck, body /shaft, base, condyle, epicondyle, trochanter, tuberosity etc.) helps describe the area of interest.

In paediatrics, fractures are described including the anatomical divisions of the bone segments: the epiphysis, the epiphyseal plate, the metaphysis and the diaphysis.

  • The diaphysis is the shaft of the bone
  • The physis is the growth plate. Also known as the epiphyseal plate, the physis occurs only in skeletally immature patients and is a hyaline cartilage plate in the metaphysis, at the end of a long bone.
  • The metaphysis lies between the diaphysis and the physis. An easy way to remember this is to think of the word metamorphosis – a change; the metaphysis is the area of change between the physis – the growth plate – and the diaphysis – the shaft. The metaphysis is only used to describe a bone before it matures – it is the growing end of the long bone. Metaphyseal fractures are almost pathognomonic of NAI. They are also known as corner fractures, bucket handle fractures or metaphyseal lesions
  • The epiphysis sits above the growth plate – epi (Greek for over or upon – like the epidermis) – physis – upon the physis

Describing the extent

For revision of specific terms to use to describe the type of fracture, see the fracture terminology glossary below. Key characteristics to add include whether the fracture is open or closed, and whether the fracture is intra-articular (inside the joint capsule) or extra-articular. Extra-articular fractures are usually less complicated.

Describing the distal fragment

There is a convention to ensure that the same injury is described in the same way: angulation, displacement, and dislocation are described by where the distal fracture fragment is in relation to the proximal fragment, or in the direction of the fracture apex.

Displacement is the loss of axial alignment: dorsal (posterior), volar (anterior) or lateral displacement of the distal fragment with respect to the proximal fragment. The degree of displacement can be roughly estimated from the percentage of the fracture surfaces in contact. Where none of the fracture surfaces are in contact, the fracture is described as having ‘no bony opposition’ or being ‘completely off-ended’, and are potentially unstable. Displacement is usually accompanied by some degree of angulation, rotation or change in bone length.

Angulation is the angle created between the distal fragment and the proximal fragment as a result of the fracture. The anatomical reference point is the long axis. Angulation is described using words like: dorsal / palmar; varus / valgus; radial /ulnar. It may be described either by reference to the direction in which the apex of the fracture points (apex volar or apex dorsal) or by indicating the direction of the tilt of the distal fragment. Medial angulation can be termed ‘varus’, and lateral angulation can be termed ‘valgus’. To measure angulation, one line is drawn through the midline of the shaft. A second line is then drawn through the midline of the fragment and the angle can now be measured.

Rotation is present when a fracture fragment has rotated on its long axis relative to the other. It may be with or without accompanying displacement or angulation. It is more readily diagnosed on clinical examination.

Finally, perfecting your referral

Referrals to the orthopaedic team, using a framework like the ISBAR tool, should start with the child’s name, hospital number and who is attending with the patient. Then proceed to give a history, including a full history of the presentation, hand dominance, fasting status and any relevant clinical risk factors such as bleeding disorders. Describe your clinical findings, including neurovascular examination, and then the radiological findings in the order of:

  • the bone(s) involved
  • part of bone
  • type of fracture
  • fracture line
  • extent of deformity and angulation
  • and any associated clinical findings

Describe any other investigations, management to date and on-going treatment. Summarise events that have occurred before referral – analgesia, backslab casts, splints, antibiotics, tetanus boosters, wound cleansing, dressings etc.

As with any good referral, be clear about why the child is being referred. It may be reasonable to transfer full care of a child. Or, the referral may simply be to gain a second opinion on the diagnosis followed by management. Be clear about the type of care expected. And finally, discuss whether you feel the referral is urgent or not. It should be stated how quickly you expect the patient to be seen. Do you feel they need to be seen urgently, soon or routinely?

At this stage, a management plan and expected outcome can be discussed and agreed. This information can then be reiterated to the child and family. Make sure everything is clearly and concisely documented.

Done!

Fracture terminology

Non-displaced fracture: A fracture where the pieces of the bone line-up.

Displaced fracture: The pieces of the bone are out of line.

Closed fracture: Either the skin is intact or, if there are wounds, these are superficial or unrelated to the fracture.

Open / compound fracture: A wound is in continuity with the fracture site.

Unstable fracture: A fracture with a tendency to displace after reduction.

Complete fracture: The fracture line extends across the bone from one cortex to the other separating the bone into two complete and separate fragments.

Greenstick fracture: Only one cortex is fractured.

Torus / buckle: Buckling of the cortex with no break.

Comminuted: There are more than two fragments.

Transverse fracture: A fracture across the bone.

Oblique fracture: A fracture at an angle to the length of the bone.

Spiral fracture: A fracture that curves around the bone diameter.

Depressed: A portion of bone is forced below the level of the surrounding bone.

Avulsion fracture: The muscle have torn off the portion of bone to which is attached.

Stress fracture: Tiny cracks in the bone caused by repetitive injuries. A cortical break is not always seen but there is greying of the cortex due to callus formation.

Pathological fracture: A fracture arising within abnormal bone weakened by benign or malignant cysts or tumours.

Impacted fractures: One fracture fragment is driven into the other.

Plastic deformation: Deformation of bone without fracture of the cortex.

Epiphyseal fractures: A fracture to the growing end of a juvenile bone that involves the growth plate. Use the Salter-Harris classification if the fracture involves the epiphyseal plate.

Fractures don’t always occur in isolation – a joint may be involved.

Fracture-dislocation: A dislocation is complicated by a fracture of one of the bony components of the joint, such as a Galeazzi or Monteggia fracture-dislocation.

Subluxation: The articulating surfaces of a joint are no longer congruous, but loss of contact is not complete.

Dislocation: Complete loss of contact between the articulating surface of a joint. Displacement of one or more bones at a joint.

References

Bickley S. & Szilagyi P. (2003) Bates’ Guide to Physical Examination and History Taking (8th edn.) Philadelphia. J.B. Lippincott, Philadelphia.

Davis, F.C.W., 2003. Minor Trauma in Children. A pocket guide. London: Arnold.

Duderstadt, K. 2006. Pediatric Physical Examination. Mosby. Elsevier.

Purcell, D. 2003. Minor Injuries. A Clinical Guide. Edinburgh: Churchill Livingstone.

Larsen, D. & Morris, P. 2006. Limb X-ray Interpretation. Whurr Publishers Limited.

McRae, R. 2003. Pocketbook of Orthopaedics and Fractures. 3rd ed. Edinburgh: Churchill Livingstone.

Raby, N., Berman, L. & De Lacey, G., 2001. Accident & Emergency Radiology. A Survival Guide. Edinburgh: W.B. Saunders.

Touquet et al, 1995. The 10 Commandments of Accident and Emergency Radiology. BMJ 1995; 311: 571.

Image source for final quiz case: https://radiopaedia.org/cases/2c1840c5145638e56f599031f23dd0c8?lang=us

Ethical considerations and decision-making about the resuscitation of very sick children

Cite this article as:
Karen Horridge. Ethical considerations and decision-making about the resuscitation of very sick children, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.30898

You wouldn’t judge a book by its cover, would you?

When thinking about the knotty matter of decision-making about resuscitation of sick children, we need to remember:

Every child’s life matters.

To always listen to the child, their parents and those who know the child best and include them in best-interests decision-making.

To always make decisions within an ethical framework and record the process of decision-making and who was involved.

To ensure pathways are in place to record and make visible best-interests’ decisions about levels of intervention.

So, what can help us with an ethical framework? Our friends at the General Medical Council have laid this out for us, in ‘Treatment and care towards the end of life: good practice in decision-making’.

Covers of GMC guidelines

This helpful document reminds us that:

  • Equalities, capacity and human rights laws reinforce our ethical duty to treat all children, neonates and young people fairly. 
  • We must always listen to child, parents and others close to them. We must take account of their views. Where there are different views, our primary duty of care is to the child.
  • Decisions must always be in a child’s best interests. 
    • We should weigh benefits, burdens and risks of treatment. 
    • We should consider all relevant factors in the decision-making process.
  • Decisions must start from a presumption in favour of prolonging life.

When making decisions, even in a dire emergency, we are reminded to:

  • Take account of up-to-date, authoritative clinical guidance.
  • In case of uncertainty, seek further expert opinions early.
  • Explain, justify and document all factors considered in decision-making.
  • Not rely on personal values when making best interests’ decisions.
    We must be careful not to make judgements based on poorly informed or unfounded assumptions about the impact of disability on the child or young person’s quality of life. 

So, you wouldn’t judge a book by its cover, would you?

Disabled children and young people come in all shapes and sizes. We can’t all be experts in each child, which is why it is so important for us to listen to parents and those who know the child best.

Please do beware of falling down the rabbit hole of preconceived ideas about what a child’s quality of life is like – always ask parents and familiar carers what the child is like when well. They may have photos and videos they can show you of their child having fun and taking part in everyday activities.

Disabled children may appear, sound and behave differently when unwell. This may be because they cannot tell you where it hurts or how they feel. They may present with behaviours that others may see as challenging. They may not tick the expected boxes on the usual screening tools, for example, for sepsis. Their temperatures may be low when you might expect them to be high, they might have high or low heart rates and may not be able to mount the expected increased work of breathing, because their respiratory muscles may be too weak for them to do so. Their control centres may not work as expected.

Hasty decisions based on preconceived ideas can lead to poor outcomes, including premature death. None of us want that.

So, what’s all this about premature death in people with learning disabilities?

If you are ready for a shocking read, then take a look at Death by Indifference, written by Mencap in 2006, but just as relevant today.

If you prefer some e-learning on the subject, take time to work through the Disability Matters session: Equal Access to the Best Health Outcomes Matters. This was co-produced with disabled children, young people, parent carers and other experts.

Then there’s the Confidential Inquiry into Premature Deaths of People with Learning Disabilities report. This report showed that women and men with learning disabilities die 29 and 23 years, respectively, sooner than women and men without learning disabilities.

So what about children? The series of reports on Why Children Die show that more than half of all children who die in England have a pre-existing, life-limiting condition. So, we all need to pay great attention and ensure we achieve the very best outcomes for these children and all children.

The team at Bristol University have built on the work they did for the CIPOLD report and now lead on the Learning Disabilities Mortality Review (LeDeR) programme. This links to the Child Death Review programme and considers the circumstances of every death of anyone with a learning disability at any age. The latest annual report can be found here.

Between 01/07/2016 and 31/12/2019, 516 children aged 4-17 years were notified to the LeDeR programme. Of these children and young people who died, 43% were from Black and Minority Ethnic groups. 46% had profound and multiple disabilities.

Whilst 7% of the deaths reported to the LeDeR programme were of children and young people aged 4-17 years, the death rate overall in the 5-19 years age group in England was 0.3%.

The LeDeR programme 2019 report highlights good and problematic practices that the multidisciplinary team, including people with learning disabilities, identified.

Good practices included:

  • Good care coordination across agencies and specialities
  • Excellent end-of-life care
  • Person-centred care, adjusted as the child or young person’s needs changed

Problematic areas of practice to reflect and learn from included:

  • Delays in responding to signs of illness or investigating illness.
    • This is known as ‘diagnostic overshadowing’, where clinicians may see the disabilities and think all presenting signs and symptoms can be explained by those, rather than undertaking a careful and structured clinical assessment to identify the underlying cause, such as pain from appendicitis, constipation, sepsis etc.
  • Poor quality multidisciplinary team working.
    • The needs of disabled children and young people are usually multifaceted and require a range of expertise to adequately assess and address them all.
  • Poor advanced care planning. 
    • Clinicians can be reluctant to have those difficult conversations with families about the risk of both sudden and unexpected death and also the risk of deterioration and death. We all need to do better on this.
  • Problems with the direct provision of care.

Recommendations from the LeDeR report included:

  • Identification of a key worker to coordinate care and communication for disabled children and young people.
  • Timely advanced care planning embedded in care pathways and clinical practice, responsive to changing needs.
  • Better discharge planning and better community support.
  • Consistent support and communication throughout each child’s life.

So where is the evidence about what parents think about end-of-life decision making? Dr Sarah Mitchell is a GP who is really interested in this and has written a useful paper in BMJ Open on the subject.

Sarah and her team interviewed parents and reported that:

  • Parents have significant knowledge and experiences that influence decision-making process
  • Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions
  • Verbal and non-verbal communication with healthcare professionals impacts on the family experience.
  • Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a
    ‘place of acceptance’
  • Families perceive benefits to receiving end of life care for their child in a PICU 

With regard to the last statement, preferred place of death is, in my experience, different for each family. Some choose home, others need to know that no stone has been left unturned right to the end, so choose intensive care. Whilst this may not always sit comfortably with paediatric intensive care teams, for some families it is what is needed to bring them peace in their journeys of grief. I have been witness to what I would consider to be ‘good deaths’ in a wide range of settings, including homes, hospices, children’s wards and intensive care units over many years. What matters most and what families remember, are how the child’s needs were identified and addressed at every step and how they are families were kept in the loop about what was happening, including being fully involved in all decision-making.

Smiling boy with disability
Matthew

It’s all well and good listening to my views as an experienced disability paediatrician on the subject, but much better to hear directly from a mother who has been on the advance care planning journey. Here are Kay’s words, describing her and her family’s journey with her son Matthew. If you prefer to hear her speaking directly, please check out the Disability Matters e-learning session Advance Care Planning Matters.

Kay says:

“Matthew had quite severe learning and physical disabilities. He was a very complex child and we used the Emergency Health Care Plan to help plan for the future and to enable us to communicate fully with other health professionals in the healthcare setting. 

Matthew didn’t have the capacity to actually make decisions for himself although he was a very wilful little boy who had very clear likes and dislikes, so he could make decisions for himself that were relevant to his day to day needs like what he wanted to eat, where he wanted to go. He had no formal communication, but as parents and the people who were involved with him we learned to read what he was trying to tell us, and as I say, he was very clear on what he liked and disliked doing but wouldn’t have been able to make the kind of big decisions that as parents we were responsible for making for him.

We did have a very large team involved in Matthew’s care and we discussed the Plan with his consultant paediatrician but she also took into account the views of people like the occupational therapists, physiotherapists, the surgeons who were dealing with him as well as the parents, myself and Matthew’s dad. We were all involved in the discussions around the development of the Plan and what was in his best interests.

Matthew’s Health Care Plan went everywhere with him and it lived in his communication bag on the back of his wheelchair. So it went with him to school, to his respite and to his dad’s house when he was there and also it was with him whenever he needed to go into hospital.

The Emergency Health Care Plan actually protected Matthew’s rights should he ever become seriously unwell. It clearly stated that he needed full resuscitation and any treatment that was available to him and clinicians then could use the plan to make judgments on what treatment would be necessary but he was able then to access a full range of treatment that would be available to any other child in a similar circumstance.

Matthew was very well for the early part of his life but when he turned 11 he had an accident, a quite serious accident and we were able to use the Emergency Healthcare Plan to access full range of medical interventions for him, as a result of that he did end up in intensive care for the first time. After that we did go through a period when he was 12 he had a twisted bowel, so he was literally in and out of intensive care and needed to be resuscitated on quite a few occasions, unfortunately, but his plan enabled us to access all of this medical intervention for him and saved his life in that instance.

Over a period of about a year, Matthew became more and more unwell. He needed regular trips to Intensive Care and regular trips to the hospital. The Plan actually went with him to hospital in Newcastle. It gave us the assurance that during these periods of Matthew being very, very poorly that the doctors in the hospital that weren’t used to dealing with Matthew, the Plan gave them all the information so we didn’t have to go through it every time that he was admitted. They trusted what we were saying because it was backed up by the Plan”.

Matthew’s paediatrician says:
“Matthew developed a lot of new symptoms that were unexplained; his seizures were becoming less controlled and we needed discussions around how we were going to treat these new symptoms as and when they appeared and what needed to be done for them.

So at this point in time, having taken account of the views of both of Matthew’s parents and the whole of the multidisciplinary team, we made a decision in his best interests that, at that time, further intrusive procedures or further intensive care was not going to be helpful or appropriate for him and might cause him further distress. So, together, we changed the wording on Matthew’s Advanced Care Plan at that time to reflect the possibility of him being allowed a natural death when his time came, recognising that we would always be there to manage his symptoms and always be there to support his family”. 

Kay continues:
“Matthew had had a chest infection and was having great difficulty breathing and his dad brought him up to hospital. We called all the family, it was obvious that Matthew was dying at this point. We had all the family called from all corners of the UK to come and say goodbye to him. We sat for hours and hours with him in the hospital ward and he was almost pronounced dead when all of a sudden, he decided it wasn’t quite his time and he took a great big breath and started breathing normally and all his colour came back. His dad described it as, like, “re-booting” his system as he wasn’t on any treatment. He was having no medication or anything and he just decided “No, it’s not my time. I’m going to come back” and we had him for another five weeks after that.

Then one day, approximately five weeks after the “re-booting” incident, Matthew wasn’t very well at all. He was due to see his paediatrician in clinic that day, but I phoned and said that “I don’t think he’s up to actually travelling to hospital,” so the paediatrician agreed to visit at home, so we waited. He’d had a massive seizure. I’d had to give him medication to bring him back from the seizure. When his paediatrician arrived, it became obvious that he was deteriorating very, very quickly and we decided that we were just going to keep him at home and see what the outcome would be, whether he would “re-boot” again or how it would play out this time”.

Matthew’s paediatrician continues:
“So Matthew was really very frail on clinical assessment at this point, so I needed to put in place the right procedures to make sure that his needs were met and the family’s needs were met. He was very peaceful and he was essentially drifting off to sleep. He didn’t have any difficult symptoms at that point that needed any changes in medication or changes in his Plan. What we did at that point is I made arrangements for if Matthew was to slip away in the night, a colleague to be able to come out and support the family and to confirm his death at that point. I also contacted the Coroner, because our Coroner liked to know in advance about any child’s death and if there is a death that is likely to be expected as defined under the Child Death Review Procedures, then our Coroner liked to know in advance. So, we made all of those arrangements and let the family have their special private time together”. 

Kay reflects:
“We spent quite a few hours with Matthew – we called close family this time around. We didn’t get everybody coming from the far end of the country to be with Matthew. So, the time when Matthew did die, it was very, very peaceful. We had some quality time with him. We had a wonderful five weeks planning memories, planting memories for the other children and we spent those few hours reflecting on that and talking and supporting each other through the inevitable outcome of Matthew dying in the early hours of the morning.

We found that, when dealing with the professionals around Matthew’s death, that being able to change the wording of the Emergency Health Care Plan it kind of validated for us that what we wanted … we wanted Matthew to be peaceful and at home when he died, surrounded by his toys and his family. We felt that the Plan, when we read the wording of it, was quite a shock to see that he should be allowed to ‘die with dignity’ but it validated what we were feeling, that it gave us permission to ask that he could die at home where we wanted him to be. It made us feel that we weren’t asking for anything that was out of the ordinary or not possible and felt that we were actually more in control of the situation when the time actually came for Matthew to pass away”. 

Achieving a supporting a child or young person through a good death is an important part of our job, when death is inevitable. We need to ensure we always steer the best possible course through the tricky waters of decision-making, protecting the rights of all children and young people to the best possible outcomes.

So, back to the key messages

  • Every child’s life matters.
  • Always listen to the child, their parents and those who know the child best and include them in best-interests decision-making.
  • Always make decisions within an ethical framework and record the process of decision-making and who was involved.
  • Ensure that pathways are in place to record and make visible best-interests’ decisions about levels of intervention.

If you want to read more about advance care planning, look at:

Horridge KA. Advance Care Planning: practicalities, legalities, complexities and controversies. Arch Dis Child. 2015;100:380-385

If you want to see and hear examples of the conversations that underpin advance care planning, more free e-learning can be found here:

https://councilfordisabledchildren.org.uk/our-work/health-and-wellbeing/practice/emergency-healthcare-plans

To listen to discussions between paediatricians and a parent about signs of sepsis in disabled children, tune in to Episode 4 of the RCPCH sepsis podcast series here.

Thank you for your time and all the best for your advance planning and decision-making.

DFTB needs you (EOI for the growing DFTB team)

Cite this article as:
Tessa Davis. DFTB needs you (EOI for the growing DFTB team), Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.30476

The time has come for DFTB to expand its team. And it’s your chance to step forward, volunteer, and join us. We have grown from a simple blog that started 7 years ago, to an educational community that creates educational content, supports each other, breaks new ground, and even gets referenced by the WHO.

DFTB’s vision is of a world where all children receive the best possible evidence-based care delivered by clinicians who are connected to their professional community, up-to-date, and motivated.

DFTB’s mission is to have a world recognised leadership role in making meaning of information in paediatric medicine, for health care workers.

We are looking for people who want to join the DFTB team and can make a commitment to volunteer some time to do so. Our structure is based on a sociocracy model made up of bubbles. Each bubble can make decisions for their own domain. You can see the structure below (click on a bubble to see its aim, domain, and what will be expected of you as a volunteer).

You can express an interest to join more than one bubble. And you don’t need to have been involved in DFTB before (you don’t even need to be in paediatrics or medicine). Here are the bubbles we are recruiting to at the moment:

We can use your skills in many ways – so if you’re interested in volunteering but aren’t sure where your skills will be used the please email us with some info to hello@dftbdigital.com

For specific descriptions of what will be required for each volunteer role, please see the chart above and click on the bubble to see more info

If you want to apply please complete the form below. Applications close on 16th November.


EMS Feedback

Cite this article as:
Andrew Patton and Andy O'Toole. EMS Feedback, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.29849

Prehospital practitioners have an ever-expanding role in managing the acutely unwell and injured patient. Despite this large contribution to patient care, the majority of practitioners find it very challenging to followup or get feedback on their management of the patient.

The recent publication of the NEMSMA position paper regarding bi-directional information sharing between hospitals and EMS agencies sparked debate on Twitter about the challenges of EMS Feedback.

Gunderson, M.R., Florin, A., Price, M. and Reed, J., 2020. NEMSMA Position Statement and White Paper: Process and Outcomes Data Sharing between EMS and Receiving Hospitals. Prehospital Emergency Care, pp.1-7.

What was the paper about?

The NEMSMA Position statement and White Paper focuses on the bi-directional sharing of data between EMS agencies and receiving hospitals. The authors looked at the challenges EMS agencies face getting feedback data regarding patient outcomes, propose best practices for bi-directional data sharing and explore the current barriers to data exchange. 

The paper highlights the importance of receiving feedback and patient outcome data for quality assurance and improvement (QA/QI). Among other things, feedback is necessary for EMS providers to determine if clinical diagnoses in the field were correct, if pre-arrival notifications were effective and if the destination choice was appropriate. 

The authors surmise that with confusing and complicated healthcare law, hospitals can be reluctant to “share information due to consequences of unintentional violations” of healthcare law, and fears of liability, many of which are misconceptions.

They report that…

“Many of the commonly held legal concerns preventing data exchange are misunderstandings and unfounded fears. While all regulations and laws need to be adequately addressed, legal issues should not preclude properly conducted sharing of electronic health records for quality improvement.”

Technology also creates a number of barriers to data sharing, in particular poor interoperability between EMS electronic patient care records (ePCR) and hospital electronic healthcare records (EHR). The absence of a universal patient identification value is another significant obstacle.   

The authors reference information blocking and market competition between hospitals as two of the big political and economic barriers which can be among the most challenging to overcome. 

They conclude by recommending a collaborative effort between EMS agencies and hospitals to develop and implement bilateral data exchange policies which would benefit all stakeholders. 

This paper focuses mainly on data sharing at an organisational level, it is very relevant to the difficulties faced by individual pre-hospital practitioners trying to follow-up on patients they treat at a local level. 

Why is this so important?

As discussed in the paper, feedback is an important part of quality improvement. For individual practitioners, feedback is a vital part of the learning cycle. Feedback is essential for us to learn from our mistakes, and to improve our practice.  To improve any performance, it is necessary to measure it. A practitioner that never follows up on a patient’s outcome will be left assuming that their treatment for the presenting complaint was accurate and warranted. They will likely continue to treat the same presentation in the same way in the future because their experience has never been challenged by facts that could have been discovered during patient follow up. 

Without feedback we could be unconsciously incompetent… We don’t know what we don’t know!

What’s the difficulty?

On an individual level, obtaining feedback and patient follow-up is challenging for EMS crews for a variety of reasons. In a local survey of 98 prehospital practitioners in Dublin, Ireland, only 21% of practitioners reported being able to follow-up interesting cases.

With dynamic deployment of EMS Resources, crews might transport a patient to a hospital and not return to that same hospital during their shift. If a crew does manage to find an opportunity to call back to the hospital, frequently the diagnostic work-up may be incomplete, and a working diagnosis still unclear. EDs are busy environments and, understandably, some practitioners may feel uncomfortable stopping a doctor or nurse to follow-up on a previous patient.

Calling back a few days later has its own complications; often there will be different staff working in the department who may not have been involved in the patient’s care. This method may work for the high-acuity resus presentations, but that ‘child with shortness of breath’ whose physical exam you were unsure of, or the child with a seizure who had a subtle weakness… the chances of the Emergency Department (ED) staff remembering their diagnosis or outcome is slim! 

Phoning the ED or ward is a route explored by many practitioners, but is fraught with increasing difficulty due to reluctance of staff to give out patient information over the phone fearing confidentiality issues. 

So how do we address this challenge?

Focusing specifically on providing feedback to individual pre-hospital practitioners, there are multiple potential ways to provide prehospital practitioners with follow-up information and feedback,  but you need to consider what system will work best for your individual department, ensuring patient confidentiality and data security.

The pre-hospital postbox

St. Vincent’s University Hospital is a tertiary referral hospital in Dublin, Ireland with approximately 60,000 annual attendances. Inspired by Linda Dykes and her team’s PHEM postbox at Ysbyty Gwynedd Emergency Department in Bangor, Wales, we set-up the Pre-Hospital Post Box in St. Vincent’s University Hospital Emergency Department in August 2017. 

We engaged local prehospital clinicians and ED consultants to develop an SOP. A postbox was built and mounted by the carpentry department. Using a template from Bangor, a feedback request form was developed.  Finally, the service was advertised in the emergency department, local Ambulance and Fire Stations and we were open for business. 

Prehospital clinicians seeking feedback on a case complete a form and place it in the post-box. The case notes are reviewed by an EM doctor and feedback is provided by phone call. 

To ensure patient confidentiality, feedback is only provided to practitioners directly involved with the patient care. A triple-check procedure is used to confirm this. The practitioner’s pin number on the request form is verified on the Pre-Hospital Emergency Care Council (PHECC) register and against the patient care record. The listed phone number is also verified through practitioners known to us or the local Ambulance Officer. 

Other hospitals use systems providing feedback via encrypted email accounts or posted letters.We elected to use a phone call system, the primary reason was the anecdotal reports that many of our pre-hospital staff don’t have easy access to work email accounts. We also anticipated that a phone call would be more likely to facilitate a case discussion and allow paramedics to ask questions that might arise during the discussion. 

Challenges with this system?

Providing feedback to prehospital practitioners is a very time-consuming and labour intensive job, particularly in hospital systems where the majority of clinical documentation is still paper-based. In our own system, where handwritten ED notes are scanned, radiology, labs and discharge letters are available on-line, and in-patient notes are handwritten physical charts – we’ve found the average time required to collate details for the feedback request is just 9 minutes, with a feedback phone call averaging 5 minutes per call.

To successfully upscale this would require a team of doctors or a rota based system with allocated non-clinical time to answer requests. Alternatively a digital solution allowing paramedics to access the data themselves, or facilitating the physician managing the case to reply directly would make it more feasible but may generate further challenges. 

The ideal, as discussed in the NEMSMA paper, would be an organisational process, with the automatic provision of discharge summaries and test results by hospitals to EMS agencies which would provide useful organisational data, and subsequent feedback to individual EMS practitioners.

GDPR / Data Protection Considerations

Patient confidentiality and data protection are of utmost importance in an EMS Feedback System. The system implemented needs to have robust mechanisms, such as our triple-check, to ensure that feedback is only provided to healthcare professionals directly involved in the patient’s care. 

It is also important that it is compliant with data protection legislation in your locality, such as General Data Protection Regulations (GDPR) introduced in Europe in 2018.  Our EMS feedback system is an important mechanism for us to review the care and treatment provided to patients and allows us to assist pre-hospital practitioners in evaluating and improving the safety of our pre-hospital services, which is provided for in the “HSE Privacy Notice – Patients & Service Users”

Providing EMS Feedback, in its current form, is a labour intensive process but we believe it is a worthwhile initiative. It is greatly appreciated by Pre-Hospital Practitioners and it enables them to enhance their diagnostic performance and develop their clinical practice.

If you’d like to find out more about how to set up a Pre-Hospital Post Box in your ED, have a look at these resources…

Attachments

References

Patton A, Menzies D. Feedback for pre-hospital practitioners: is there an appetite? Poster session presented at: 2017 Annual Scientific Meeting of the Irish Association for Emergency Medicine; 2017 Oct 19-20; Galway, Ireland.  

Gunderson MR ,Florin A , Price M & Reed J.(2020): NEMSMA Position Statement and White Paper: Process and Outcomes DataSharing between EMS and Receiving Hospitals, Prehospital Emergency Care, https://doi.org/10.1080/10903127.2020.1792017 

Croskerry P. The feedback sanction. Acad Emerg Med. 2000;7:1232-8.

Jenkinson E, Hayman T, Bleetman A. Clinical feedback to ambulance crews: supporting professional development. Emerg Med J. 2009;26:309.

Patton A, Menzies D. Case feedback requests from pre-hospital practitioners – what do they want to know? Meeting Abstracts: London Trauma Conference, London Cardiac Arrest Symposium, London Pre-hospital Care Conference 2018. Scand J Trauma Resusc Emerg Med 27, 66 (2019). https://doi.org/10.1186/s13049-019-0639-x  

Patton A, Menzies D. Feedback for pre-hospital practitioners – a quality improvement initiative. Meeting Abstracts: London Trauma Conference, London Cardiac Arrest Symposium, London Pre-hospital Care Conference 2018. Scand J Trauma Resusc Emerg Med 27, 66 (2019). https://doi.org/10.1186/s13049-019-0639-x   

O’Sullivan J. HSE Privacy Notice – Patients & Service Users v1.2.  2020 Feb, Accessed on-line: https://www.hse.ie/eng/gdpr/hse-data-protection-policy/hse-privacynotice-service-users.pdf 


Telehealth vs Traditional Medicine

Telemedicine vs Traditional Medicine

Cite this article as:
Caroline Ponmari, Kausik Bannerjee and Tony Hulse. Telemedicine vs Traditional Medicine, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.28966

The COVID – 19 pandemic has resulted in significant changes in the healthcare system. In the early stages adult services were overwhelmed with sick patients, whereas it seems that there has been an unprecedented (and rather dramatic) decline in pediatric attendances. Lockdown and advice from the government urged people to stay at home to prevent the spread of the virus. In response we, as paediatricians, were forced to consider making changes in our style of delivering care and clinic services to support children and families.  

Telemedicine was not new before COVID-19 but it has now become a legitimate means of allowing medical professionals and patients to communicate in a virtual clinic setting. We aim to provide high-quality safe care to every patient but it has taken a global pandemic for us to start at scale to harness modern technology so that we can deliver care closer to home and provide a seamless service for our patients and their families. To make the most from advances in technology we must understand the benefits and problems.

Let’s start with the pros

Telemedicine is a game-changer in paediatric asthma. Take the example of a district general hospital with 3300 paediatric attendances with asthma/ viral-induced wheeze in a year, 780 admissions and sees a cohort of 120 re-attenders in paediatric ED. During the pandemic, there were concerns that children would present late for emergency care, and be sicker as a result of this delayed presentation. To addressing this, virtual asthma clinics were started seven days a week.

Then the unexpected happened.

Paediatric asthma attendances to ED reduced by 90%, the chronic attendees, some who were on a high dose of steroids and who would attend ED up to 10 times in a year, also needing PICU, on occasions were nowhere to be seen.

Several factors such as lockdown, change in air pollution levels and handwashing were probably the main contributors.

Virtual asthma clinics also reported a high level of engagement and increased compliance with medications, especially from repeat attenders and teenagers who previously had shown poor compliance. Parents were reported to be very appreciative of the virtual clinics at a time when they felt that getting GP appointments was not easy.

Clinicians and asthma nurses were able to suggest modifications in medications through the virtual clinics, treat exacerbations at home and liaise with primary care for repeat prescriptions. Compliance improved to an extent that a shortage of preventors was reported in the trust. Change in patient and parent specific behaviour due to fears of contacting COVID-19 was thought to have led to increased compliance with medication and contributed to better management of paediatric asthma. 

One frequent ED attender is a four-year old with recurrent wheezy episodes, who normally presents in respiratory distress needing nebulisation and IV medications. After many months, he arrives back to ED in May 2020 and recieves a rapturous welcome from staff. The triage nurse took him straight in, and the doctors and nurses got ready to write up medication. The patient and family were highly gratified with the welcome, but hastened to report that he had come in with a pulled elbow. “So how was the asthma then?”, the ED staff asked all puzzled. “Great”, said the mum, so well controlled, he has not had wheeze for ages, he is taking his preventors every day. The lad made everyone’s day in ED, even the pulled elbow reduced spontaneously.

COVID-19 seemed to be able to address the compliance issue in ways that clinicians and asthma nurses could only dream of. 

Similar experiences were reported from the virtual clinics for paediatric diabetes. Paediatric diabetes consultation is focused on data interpretation, behaviour modification and tweaking of the dosage of medication.

All of this can be done remotely.

Furthermore, children, as it turned out, proved to be a dab hand at uploading data from their glucometers and insulin pumps. This in turn led to greater engagement as children showed their parents and doctors the ropes around tech, giving a sense of ownership and empowerment. The did-not-attend rate became minimal and the compliance improved dramatically.

The virtual endocrine clinic is also working well. Children who present for their initial appointment are best seen in a traditional clinic setting. Subsequently, a vast majority can be followed up virtually with an annual physical assessment. This includes children with problems with growth, thyroid and CAH. However, there will always be a small number of patients who need more frequent physical assessment.

The cons

The inability to examine patients in a teleconsultation has risks. For example, a child with a longstanding goitre can become neoplastic. Physical examination allows the experienced clinician to construct the differential diagnosis based on palpation of the thyroid gland which guides further investigation. This is not possible in a virtual clinic setting.

This is where good old-fashioned traditional medicine comes up trumps. Every consultation and physical examination give clinicians an unique opportunity to address existing clinical issues whilst providing an insight into additional psychological issues that may be lurking beneath the surface, especially in children with diabetes.

The consultation effectively starts as the child walks in, the gait, the facial expression there is clue in every step. Vital signs, which often provide clues to the diagnosis, cannot be recorded in telemedicine. Language barriers add a third dimension to telemedicine, using a third party to add to the mix. There is the risk that the equipment related to telemedicine can fail resulting in interruption or cancellation of the virtual clinic. 

Complaints received in the NHS often relate to the perceived behavioural aspect of clinicians toward patients sometimes even more than medical management. Bedside manner is of importance, body language clues from the clinicians that reinforces that they are actively listening to children and their families thus making the consultation a positive experience. This results in better patient experience and job satisfaction for clinicians. Compassion and empathy are a vital part of the clinician and patient experience, how this would translate in a virtual clinic needs further investigation.

The disparity between equity of access also emerged during the pandemic when virtual clinics became mandatory. Some children only had access to the internet at school and the local library. This caused some logistical difficulty in managing data remotely. A request to social services was made to fund the upgrading of one family’s phone so they could access the digital platform for diabetes education and data transfer. Fortunately, these cases seemed uncommon. 

The UK’s General Medical Council (GMC) provides ethical guidance to help clinicians manage patient safety and risks and decide when it’s usually safe to treat patients remotely. Consent and continuity issues are addressed, additionally, choosing the right patient who is suitable for the virtual clinic is addressed. However, the issues of liability and responsibility are not clear. The UK Care Quality Commission and other national regulators do not provide specific telemedicine polices for healthcare providers.

Some clinicians believe that use of teleconsultation threatens the basics of medicine. Excessive reliance on tech goes against the traditional clinician-patient relationship. We enter an unchartered territory were risks and responsibilities are both unclear and unknown.

The bottom line

The pandemic has given a snapshot on how we can change the way we deliver healthcare. Expectations have changed. We need a system that allows flexibility between telemedicine and traditional medicine and is responsive to clinical needs. It is important not to forget the basics – observing the patient, review of nursing observations, clinical examination, reaching a differential which will then guide the necessary investigations. However, for the right patient, telemedicine can be a safe and cost-effective option.

Caroline Ponmani (Barking, Havering, and Redbridge University Hospitals NHS Trust) 

Kausik Banerjee(Barking, Havering, and Redbridge University Hospitals NHS Trust) 

Tony Hulse  (Evelina Children’s Hospital)