GUIDELINE REVIEW
Challenging behaviour and learning
Department of Paediatrics,
Royal Free Hospital NHS Trust,
London, UK
Correspondence to
Dr Manjari Tanwar, Department
of Paediatrics, Royal Free
Hospital NHS Trust, Pond street,
London NW3 2QG, UK;
manjari.tanwar@nhs.net
Received 15 December 2015
Revised 24 August 2016
Accepted 12 September 2016
Published Online First
5 October 2016
To cite: Tanwar M, Lloyd B,
Julies P. Arch Dis Child Educ
Pract Ed 2017;102:24–27.
24
disabilities: prevention and
interventions for children with
learning disabilities whose behaviour
challenges: NICE guideline 2015
Manjari Tanwar, Benjamin Lloyd, Priscilla Julies
INFORMATION ABOUT CURRENT
GUIDELINE
In May 2015, the National Institute for
Health and Care Excellence (NICE) pub-
lished guidance entitled ‘Challenging
behaviour and learning disabilities: pre-
vention and interventions for people with
learning disabilities whose behaviour chal-
lenges’.1 The guideline concerns children
(aged 12 years or younger) and young
adults (13–17 years) covering principles
of management.
PREVIOUSLY PUBLISHED GUIDANCE
The British Psychological Society published
a report entitled ‘Challenging behaviour: a
unified approach’ in 2007.2 This guideline
was developed for clinical psychologists
working mainly within the child and ado-
lescent mental health services. To our
knowledge, the NICE guideline1 is the first
to provide guidance to paediatricians and
general practitioners working in this field.
KEY TERMINOLOGY
Learning disability: This guideline high-
lights that ‘Learning disability’ is the most
widely and accepted term in the UK—
defined by three core criteria:
1. Lower intellectual ability (IQ <70)
2. Significant impairment of social adaptive
functioning
3. Onset in childhood
‘Behaviour that challenges’ is not a diag-
nosis and is used in this guideline to indi-
cate that although difficult behaviour may
be a challenge to services, family members
or carers, it may serve a purpose for the
person with a learning disability and often
indicates an unmet need.
Tanwar M, et al. Arch Dis Child Educ Pract Ed 2017;102:24–27. doi:10.1136/archdischild-2015-309575
The terminology in intellectual disability
is a contentious issue. In this guideline, the
term ‘Behaviour that challenges’ is used
rather than ‘challenging behaviour’ to
highlight that an individual with challen-
ging behaviour is not the only one requir-
ing treatment and to therefore ensure that
other elements such as the environment,
skills, attitudes of carers/staff and service
capabilities are simultaneously assessed
and are also the focus of intervention.
It is relatively common for people with a
learning disability to develop behaviour
that challenges (5%–15%), acknowledging
that objective assessment is often difficult.
KEY POINTS
Assessment
1. Pre-assessment: Early identification of
behaviour that challenges is the key.
Everyone involved in caring for and sup-
porting children and young adults with a
learning disability should understand the
risk of behaviour that challenges and that
it often develops gradually.
Therefore, pre-assessment should
include recording all risk factors and red
flags (box 1).
2. Annual physical health check: General
practitioners should offer an annual phys-
ical health check to children and young
adults with learning disability.
This should include:
▸ Review of any known or emerging
behaviour that challenges and assess
whether this may be linked to any
physical health problem
▸ Current health interventions including
medication and side effects
▸ Review of pain
▸ Review of sleep
 Guideline review
behaviour. This should be reviewed frequently (fort-
Box 1 Risk factors and red flags nightly for the first 2 months and monthly thereafter).
This should involve:
Risk factors ▸ Proactive strategies designed to improve the child/
Personal young person’s quality of life and remove triggers
▸ A severe learning disability that have been identified to promote behaviour that
▸ Autism (self-injury and stereotypy) challenges.
▸ Communication difficulties ▸ Changes to personalised daily activities, environment
▸ Visual impairment and routine both at home and school.
▸ Physical health problems ▸ Developing new skills to replace undesired behaviour
▸ Variations with age ( peak in teens) (eg, reaching or requesting instead of screaming).
Environmental/safeguarding ▸ Preventive strategies, such as calming, diversion or
▸ Abusive/restrictive distraction when a child shows signs of distress.
▸ Too little or too much sensory stimulation ▸ Delivering reactive strategies—strategy used to make a
▸ Developmentally inappropriate environments situation safe when faced with behaviour that challenges.
(eg, curriculum-too demanding) 2. Early intervention:
Changes to person’s environment ▸ A recommendation is to consider standardised group
(eg, new care setting/staff changes) sessions for parents or carers focusing on developing
Red flags communication and social functioning.
▸ Suicidal ideation/self-harm ▸ Preschool classroom-based interventions for children
▸ Harm to others aged 3–5 years with emerging, or at risk of develop-
▸ Self-neglect ing behaviour that challenges.
▸ Breakdown of family/support 3. Intervention for behaviour that challenges:
▸ Safeguarding concerns (neglect and emotional) ▸ Personalised interventions based on behavioural princi-
ples and a functional assessment of behaviour to focus
on clear targeted behaviours, with agreed outcomes.
3. Assessment process: ▸ Assessment and modification of environmental
▸ The person being assessed should remain at the factors that could trigger or maintain the behaviour
centre of concern and be fully supported throughout (eg, reducing noise, improving predictability by
the process. encouraging routines).
▸ The process should fully involve the person and their ▸ Address staff and family member or carer responses
family members and carers. to behaviour that challenges.
▸ It should follow a phased stepwise approach as out- ▸ A clear plan to positively reinforce desired behaviour
lined in figure 1, aiming to understand why the should be based on the IQ of an individual child.
behaviour occurs. ▸ Agree specified timescale to meet intervention goals.
▸ Initial assessment should include: 4. Consider antipsychotic medication always under expert
– Description of the behaviour from the person (if guidance (child psychiatrist or a neurodevelopmental
possible) and a family member, carer or a member paediatrician) and only if:
of staff (such as teacher or care worker). ▸ Psychological or other interventions alone do not
– Details of personal and environmental factors produce change within an agreed time or
involved in developing or maintaining the ▸ Treatment for any co-existing mental or physical
behaviour. health problem has not led to a reduction in the
– Consider using formal rating scale to ascertain behaviour or
baseline levels for behaviour (eg, –Aberrant ▸ The risk to the person or others is very severe (eg,
Behaviour Checklist or Adaptive Behaviour Scale). violence, aggression or self-injury).
– Functional assessment of behaviour: structured 5. Sleep management: Use structured bedtime routines. Do
assessments such as ‘functional analysis screening not offer medication to aid sleep unless the sleep
tool’ and ‘motivational assessment scale’ can be problem persists after a behavioural intervention.
helpful to understand the relationship between the ▸ Melatonin: Treatment with melatonin should only be
behaviour and what triggers and reinforces it. initiated and supervised by a specialist ( paediatrician
or psychiatrist) but may be continued by general prac-
Management titioners under shared care arrangements.
1. Formulate a written behaviour support plan which is 6. Reactive/restrictive strategies should be considered as a last
based on the shared understanding of the function of the resort and must only be delivered on ethically sound basis.

Tanwar M, et al. Arch Dis Child Educ Pract Ed 2017;102:24–27. doi:10.1136/archdischild-2015-309575 25

 Guideline review

Figure 1 Our own flow chart based upon National Institute for Health and Care Excellence guidance NG11, summarising the
principles of phased approach for assessment and management of behaviour that challenges in children with learning disability. As
we acknowledge there is a wide geographical variation in practice and access to services, local guidelines may be necessary based on
the available resources and expertise.

Critical appraisal: 3. There is a wide variation in services (especially child

1. The guideline mentions sleep, but does not highlight
the importance of assessing pain and sleep in children
and young adults whose behaviour challenges. It also
does not signpost towards validated tools for assessing
pain in non-verbal children (eg, FACES pain tool,
FLACC—face, legs, activity, cry and consolability,
VAS—visual analogue scale). The ‘Cardiff health check
template’ mentioned in the guideline is used in adults,
and could be adapted for use in children.
2. There is no mention of ‘transitioning to adult care’ for
children and young adults with learning disability whose
behaviour challenges, which is an important aspect of
care. This should be a mandatory process, rather than
optional with a clear guidance.
and adolescent mental health services), resources and
training across different areas; therefore, services may
need to develop their own pathways to deliver this guide-
line effectively.
Responsibilities of commissioners and organisations:
The NICE guidance has strongly emphasised the
responsibilities of commissioners and organisations.
Given this, we have outlined these responsibilities in
the text box below.
Unresolved controversies:
Who should look after these children medically?
The guidance states that the annual physical health
check should be done by GPs. Some may argue that

26 Tanwar M, et al. Arch Dis Child Educ Pract Ed 2017;102:24–27. doi:10.1136/archdischild-2015-309575


Responsibilities of commissioners and
organisations:
1. Provide training, supervision and support to all staff
involved with children with learning disability in early
identification, assessment and management of behaviour
that challenges.
2. Provide prompt co-ordinated access to specialised
behavioural assessments, support and intervention ser-
vices via clearly laid out pathways.
3. Provide adequate family support and education.
this is best done by the community paediatricians. In
our experience not all children with a learning disabil-
ity have associated medical needs and capacity issues
make it practically difficult to see all children with a
learning disability. Furthermore, continuity of patient
care, by a practitioner who is familiar with the patient
and their family, would further enhance their care and
enable smooth transition into adulthood. Therefore,
our view is that the GP is best placed to perform the
physical health check. Our current practice is for the
community paediatricians to see only those children
with complex medical needs, as part of school health
service.
WHAT SHOULD I START DOING?
▸ Follow a phased approach for behaviour that challenges
(see figure 1).
▸ Offer sleep medication (melatonin) for sleep problems only if
the problem persists after a behavioural intervention.
WHAT CAN I CONTINUE TO DO AS BEFORE?
▸ Ensuring that the child/young person being assessed
remains the focus of concern and is supported through-
out the process.
▸ Recognise the impact of living with or caring for a person
with learning disability and behaviour that challenges.
▸ Advise family members or carers about their rights:
– explain how to get a formal carer’s assessment of their
own needs (including physical and mental health)
– in relation to short breaks and other respite care
( provided by social care)
▸ Enquire about sleep problems in children with disability
and its impact on the family.
▸ Ensure optimisation of medication for co-existing mental
or physical health problems identified as a factor in dev-
elopment and maintenance of the behaviour that
challenges.
Acknowledgements Professor Hassiotis (Professor, University
College London and Honorary Consultant Psychiatrist, Camden
and Islington Foundation Trust), Dr Nirmala Sellathurai
(Consultant community paediatrician, Hounslow and
Richmond Community Healthcare). Dr Nigel Marshall
(GP, Nottingham Children’s trust).
Contributors BL: draft and revision; PJ: draft, revision and final
approval.
Tanwar M, et al. Arch Dis Child Educ Pract Ed 2017;102:24–27. doi:10.1136/archdischild-2015-309575
Guideline review
Useful resources
1. Assessment: The examples of questionnaires listed in
the guideline that can be used for behavioural assess-
ment include Aberrant Behaviour Checklist and Adaptive
Behaviour Scale. A simple and commonly used ‘Strength
and Difficulty Questionnaire’ can also be very helpful in
pre-assessment.
2. Behaviour support plan:
Example: ‘Getting to know me’ form—Nottinghamshire
pathway
http://www.nottinghamshire.gov.uk/media/2420/
getting-to-know-me-form.docx
3. Examples for early intervention for children—under
5 years early years intervention team, children’s centre,
parenting programmes, families in focus.
4. Sleep: Useful resource
Sleeping difficulties in children and young people with
learning disabilities: (http://www.wlmht.nhs.uk/wp-content/
uploads/2015/06/Sleeping-difficulties-LD-A5-leaflet.pdf)
5. Example of multiagency pathway—Nottinghamshire
pathway
http://www.nottinghamshire.gov.uk/media/2423/
nottinghamshire-concerning-behaviours-tool-kit-pdf.pdf.
pdfexample: concerning behaviour multiagency pathway
webpage- paediatrics
6. Carer’s assessment:
http://www.nhs.uk/Conditions/social-care-and-support-
guide/Pages/carers-assessment.aspx
Clinical bottom line
▸ Prevention and interventions for people with learning
disabilities whose behaviour challenges is everyone’s
responsibility.
▸ All staff working with people with learning disability
and behaviour that challenges should be trained to
deliver proactive strategies to reduce the risk of
behaviour that challenges.
▸ Early identification and prevention are crucial.
▸ A phased approach should be followed for assess-
ment and intervention with specialist input when
required.
Competing interests None declared.
Provenance and peer review Commissioned; externally peer
reviewed.
REFERENCES
1 http://www.nice.org.uk/guidance/ng11 [Link to full NICE
guideline]
2 Challenging Behaviour: a unified approach in 2007 by The
British Psychological Society.
27