Defining Learning Disability

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

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

Learning Disability

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

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

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

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

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

Learning Difficulty

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

Autism

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

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

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

Person First vs Identity First Language

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

Child with learning disability

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

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

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

Top Tips for Oncology

Cite this article as:
Ana Waddington. Top Tips for Oncology, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.29036

Next up in our DFTB Top Tips series is a set of helpful tips for caring for oncology patients.

Top Tips for Managing Febrile Neutropaenia

  1. Patient should be nursed in protective isolation
  2. Access your local Paediatric Oncology Supportive Care Guidelines for first line antibiotic choice
  3. Refer to your Local Paediatric Oncology Supportive Care Guidelines for guidance and to ensure all correct tests are completed 
  4. Medical review and IV antibiotics to be administered within an hour of presentation 
  5. One documented temperature 38  ̊C or over is enough to start treatment (even if this was at home and they are now under 38  ̊C)
  6. Culture all lumens 
  7. The use of high dose steroids in induction treatment for Acute Lymphoblastic Leukaemia can mask signs of infection, low threshold for starting treatment for febrile neutropaenia during this part of the protocol

3 other things to think about…

  1. Pre-filled saline flushes: These contain preservatives which can cause discomfort or allergy in some patients – find out if your patient is sensitive.
  2. Nausea and vomiting can be made worse by strong smells such as antiseptic wipes.
  3. Mucositis is a common side effect of chemotherapy and can cause considerable pain for patients. Be careful when inserting nasogastric tubes, encourage regular mouth care and analgesia and avoid using PR medications.

What are some of your top tips when caring for oncology patients? Feel free to share them in the comments below!

For your convenience or as a handy reminder for your workplace, the top tips are highlighted in an A4 poster below (infographic design by Kat Priddis @kls_kat):

Top Tips for Play & Distraction

Cite this article as:
Ana Waddington. Top Tips for Play & Distraction, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.29018

Next up in our DFTB Top Tips series is a set of helpful ideas for improving play & helping distract your patients from painful procedures. A special thanks to Janie Saunders for helping share her wisdom from many years working as a play specialist.

  1. Play is a tool that opens doors and is a universal language.
  2. Always address the child or young person first (not their parents). Treat them as the individuals that they are.
  3. Do not lie – Say what you are going to do. Do it.
  4. Every age needs distraction no matter how old!
  5. A smile is always good. Consider how you can show children your calmness and gentleness. If they trust you, it will be easier to examine them and perform procedures.
  6. Remember that no one is ever too big to be scared.
  7. Consider play specialists for bereavement talks
  8. Take your time to talk to them.
  9. If something doesn’t work – try something else! Keep trying; it really makes a difference
  10. Toys are your friend – there are plenty of different toys to choose from – bubbles, talking, iPads, noisy books, lighting up toys, cause and effect toys, books, finding games, sensory toys, cards, and ‘Where’s Wally’ and ‘I Spy’ books.

What are some of your top tips for play and distraction? Feel free to share them in the comments below!

For your convenience or as a handy reminder for your workplace, the top tips are highlighted in an A4 poster below (infographic design by Kat Priddis @kls_kat & Grace Leo @gracie_leo):

Top Tips for Paediatric Cardiology

Cite this article as:
Ana Waddington. Top Tips for Paediatric Cardiology, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.28999

Here is our next fabulous little treasure trove of tips on Paediatric Cardiology from Helen Ormrod and Anna Mcquorquodale…

  1. In SVT – use a 3 way tap because the adenosine half life is so small that even if you use a bio-connector, the medication will get lost and you don’t want to be giving more adenosine than you need to.
  2. When performing Pre and Post ductal sats, use the right hand and right leg – as a rule of thumb, looking for a gradient of more than 5 (95% vs 90%). We do this because we are worried about any cardiac lesion that is affecting systemic circulation such as cortication of the aorta
  3. Four limb BP is only useful within the first 3-4 months of life because of the conditions that we are looking for. The gradient has to be 20 or more. Don’t worry if there is a tiny discrepancy.
  4. When following up a patient with a known congenital heart disease, try and find out through their letter or consultant where they are with their surgery. If they now have an anatomically normal heart, we don’t need to be as concerned about their cardiac disease. For example, a PDA ligation 3 years ago.
  5. It’s important to be aware that CHD kids, especially post repair, are more likely to have arrhythmias (even if they have reached a stage where their heart is structurally normal). Arrhythmias that can be quite benign in general kids can have a significantly more detrimental effect on those with CHD (even if repaired).
  6. Fluids are part of a delicate balance. These patients need to remain hydrated in order to help their cardiac function but for the same reason they should not be overloaded. Strict input and output balances are required.
    • If the patient has a cardiac shunt (BT Shunt etc) and are dehydrated, this is a life threatening emergency and can become a cardiac arrest very quickly. Move to resus!
  7. If a child has an uncorrected TOFF and have come in with pyrexia or discomfort need to be managed in HDU bay as they can become sick very quickly. Apply cardiac monitoring and saturation.
  8. If a cardiac baby is septic, there is no reason not to give treatment as they need it to help their cardiac function.

What are some of your top tips? Feel free to share them in the comments below!

For your convenience, the top tips are summarised in an A4 poster format (infographic design by Kat Priddis @kls_kat & Grace Leo @gracie_leo):

Top Tips for Paediatric Oncology Lines

Cite this article as:
Ana Waddington. Top Tips for Paediatric Oncology Lines, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.25732

Are you involved in the care of paediatric hickmans, port or picc lines  in paediatric patients? Lines, particularly those for oncology patients can sometimes leave nursing and medical staff all tangled up. Thanks to the Royal London Hospital Paediatric Oncology team, Ana Waddington and Amanda Ullman we are happy to share some handy top tips to improve line care:

    1. Use aseptic non touch technique (ANTT) when accessing Oncology patients Central venous lines 
    2. Clamping sequence is important, to prevent back-flow of blood up the device. But, the sequence (including positive vs neutral pressure) depends on the needleless connector that you use. Always check the manufacturer’s recommendations.
    3. Securing your line:  Always have at least one securement device (e.g., sutures, clasp, reinforced dressing) to keep the central line in the correct place – and two is even better
    4. Flushing: Flushing the central line with 0.9% sodium chloride after administration of viscous fluids is vital to prevent occlusion. 
    5. When accessing a totally implanted device (e.g., port-a-cathTM):
      • Consider local anaesthetic prior to insertion (e.g., LMX, Ametop, Emla)
      • Pinch the edges of the port- a cath to secure the location to insert your needle
      • Insert at 90 angle until you feel the needle hit the back
      • Don’t force it- you may cause some injury to the port chamber
      • Try repositioning yourself and the patient to an angle that feels more comfortable
      • If under the armpit, try lifting the patient’s arm to stretch the skin
      • Try not to go where there is bruising, adjust the skin
    6. There are 2 types of occlusion – Withdrawal Occlusion and Total Occlusion
        • Withdrawal Occlusion – flush gently with 0.9% Sodium chloride, get patient to look up and away from their line as they maybe causing an internal kink, change their position, if unsuccessful then can use Urokinase/Alteplase
        • Total Occlusion – Change bionector, take dressing down to check for external kinks, get patient to look up and away from their line as they maybe causing an internal kink, change their position, if unsuccessful then can use Urokinase/Alteplase
    7. No matter what the presentation (e.g., injection vs aspirate occlusion) always think through the possible causes, while problem-solving:
      • Consider mechanical occlusion: e.g., do you have malfunctioning needleless connectors? Are there external kinks? Plus [really importantly] is the tip position central? 
      • Consider infusate occlusion: i.e. have you just administered medications that may have precipitated? If so, talk to your pharmacist about how to dissolve.
      • Then think about thrombotic occlusion, and consider administering thrombolytic agents, like urokinase. If this doesn’t work, consider imaging e.g., lineogram
    8. Do not use prefilled syringes to flush off a PICC, as these are luer lock not luer slip syringes and they cause the PICCs to block
    9. Do not put heparin into a PICC line, they are to be flushed with 0.9% Sodium Chloride
    10.  If you run into trouble and are not sure what to do- make sure that you seek help with senior staff of your team, check your hospital policy/guidelines and the manufacturer instructions to solve the problem together.

For your convenience, the top tips are summarised in an A4 poster format (infographic by Grace Leo):