Guidelines endorsed by RCPCH - Neurodisability

The College reviews high quality guidelines and standards produced and published by other organisations against the RCPCH Standards for Endorsement. We believe the following publications will be of interest to paediatricians working in neurodisability.

The following have been endorsed by the College.

Endorsed guidelines

Attention Deficit and Hyperactivity Disorder (NICE)

The guideline covers the treatment and management of attention deficit and hyperactivity disorder (ADHD) in children over 3 years, young people and adults in primary, secondary and community care. It is particularly relevant to primary, secondary and community healthcare professionals and educational services that have direct contact with, or make decisions concerning the care of children, young people and adults with ADHD.

The guideline is accompanied by algorithms, a quick reference guide, audit tools, costing report, costing tools, a slide set, implementation advice and information for parent/carers, and includes audit criteria.

The RCPCH welcomes the publication of this guideline but asks Members to note the following:

  • This guideline does not define the term, "full psychiatric assessment".

Date of Publication: September 2008
Date of Endorsement: March 2009

Full guideline (PDF, 1.86MB, 374 Pages)
NICE guideline (PDF, 333KB, 59 Pages)
Key messages (PDF, 886KB, 20 Pages)

Autism Spectrum Disorders (SIGN)

The guideline covers the assessment, diagnosis and clinical management of autism spectrum disorders (ASD) in children and young people up to the age of 18, including transition from childhood to adult services.

The guideline is accompanied by a quick reference guide and includes resource implications, key points for audit and local implementation advice.

The RCPCH welcomes the publication of this guideline but asks Members to note the following:

  • The guideline recommends that the Lovaas programme (an intensive behavioural programme) should not be presented as an intervention that will lead to normal functioning. The guideline states that this is based on evidence from a systematic review but that all studies included in the review had considerable methodological flaws and that it was difficult to generalise from the conclusions. However, absence of evidence of an effect does not equate with evidence of an absence of an effect, i.e. that the programme does not work. SIGN have responded to RCPCH concerns regarding this recommendation, emphasising that the wording of this recommendation carefully reflects the current lack of evidence despite the existence of trials.
  • The guideline recommends against the use of facilitated communication with children and young people with ASD. The guideline states that this is based on the following: "Two systematic reviews of facilitated communication conclude that there is no evidence to validate claims that the person with autism is being helped to communicate, although there is extensive evidence of communications that are generated by the 'facilitator' (see p19 of guideline). Again, absence of evidence of an effect does not equate with evidence of an absence of an effect.
  • The evidence includes only one review. The other reference cited is a small cohort study. SIGN have readdressed the level of evidence assigned to the small cohort study however the overall grading of the recommendation remains the same. The guideline development group believe that the recommendation is justified in light of ethical considerations relating to the use of facilitated communication raised by APS

The RCPCH would like to emphasise that, overall, this guideline is an extremely valuable and worthwhile addition to the field.

Date of Publication: July 2007
Date of Endorsement: April 2008

Full guideline (PDF, 650KB, 73 Pages)
Quick reference guide (PDF, 151KB, 2 Pages)

Autism Spectrum Disorders in Children and Young People: Recognition, Referral and Diagnosis (NICE)

This guideline covers the recognition, referral and diagnosis of autism in children and young people from birth up to 19 years. It emphasises the need for coordination between health agencies and other key services.

We note that some of the service descriptions may have implications for trainees. NICE states that "the GDG acknowledge that it is important to consider the different ways in which these services operate, and how trainees are supported and supervised. The descriptions are not meant as specific blue prints for how services should operate."

Date of publication: September 2011
Date of endorsement: September 2011

Full guideline (PDF, 660KB, 73 Pages) 

Challenging behaviour and learning disabilities (NICE)

A learning disability is defined by 3 core criteria: lower intellectual ability (usually an IQ of less than 70), significant impairment of social or adaptive functioning, and onset in childhood. 
Some people with a learning disability display behaviour that challenges. 'Behaviour that challenges' is not a diagnosis and is used in this guideline to indicate that although such behaviour is a challenge to services, family members or carers, it may serve a purpose for the person with a learning disability. 
This behaviour often results from the interaction between personal and environmental factors and includes aggression, self-injury, stereotypic behaviour, withdrawal, and disruptive or destructive behaviour. It can also include violence, arson or sexual abuse, and may bring the person into contact with the criminal justice system.
This guideline covers the care and shared care provided or commissioned by health and social care, in whatever care setting the person lives.
Date of Publication: May 2015
Endorsed on: January 2016
Full guideline (PDF, 4095KB, 371 Pages) 
NICE guideline (PDF, 245KB, 57 Pages)

Epilepsies in Children and Young People (SIGN)

This guideline covers the diagnosis and management of the epilepsies of children and young people aged from one month to 19 years of age remaining in secondary education. The guideline is aimed at healthcare professionals involved in the diagnosis and management of childhood epilepsy. Throughout the guideline seizures are referred - these may be epileptic or non-epileptic. Further, a convulsion or convulsive seizure refers to a specific type of seizure involving motor movements, which may also be epileptic or non-epileptic.

Date of Publication: April 2005
Date of Endorsement: May 2005

Full guideline (PDF, 973KB, 57 Pages)
Quick reference guide (PDF, 181KB, 2 Pages)

Epilepsies in Adults and Children in Primary and Secondary Care (NICE)

This guideline covers the diagnosis, treatment and management of epilepsy in children, adolescents and adults. It includes recommendations on children with learning difficulties, partial and generalised epilepsies, primary, secondary and tertiary settings including accident and emergency departments, the use of pharmacological and non-pharmacological interventions (including ketogenic diet) and monitoring by the clinician, patient and carer. The guideline also provides recommendations on tertiary procedures such as surgical techniques or Vagus Nerve Stimulation. The guideline does not include recommendations relating to the management of neonates or febrile convulsions, nor does it provide recommendations on driving or indications for referral to surgery.

The guideline is accompanied by a quick reference guide, an online educational tool, and a commissioning guide. It includes audit criteria and key priorities for implementation.

Date of Publication: October 2004
Date of Endorsement: January 2005

Full guideline (PDF, 1.06MB, 397 Pages)
NICE guideline (PDF, 349KB, 73 Pages)
Audit and Implementation presentation (PDF, 1.47KB, 25 Pages)

Practical Guidance for the Management of the Palliative Care on Neonatal Units

This guideline covers all aspects of the management of palliative care on neonatal units and focusses on practical aspects of infant care. It includes details on pain relief, symptom relief, comfort and dignity, the management of prognostic uncertainties, and the provision of support.

Developed by members of the multidisciplinary neonatal medicine team at Chelsea and Westminster NHS Foundation Trust, in collaboration with the Royal College of Paediatrics and Child Health, this guideline, which complements existing resources, equips staff working on a neonatal unit with a clear set of principles to underpin the care they provide to babies in life-limited situations and support parents.

The project is supported by a wide group of stakeholders including ACT, APPM, BAPM, BLISS, RCM, RCN, SANDS and the UK Neonatal Networks.

Date of Publiction: February 2014
Date of Endorsement: February 2014

Full guideline (PDF, 714KB, 40 Pages)
Supporting documents are available from the Chelsea and Westminister Hospital.

Spasticity in Children and Young People with Non-Progressive Brain Disorders (NICE)

 This guideline covers the management of spasticity and co-existing motor disorders and their early musculoskeletal complications in children and young people (from birth up to their 19th birthday) with non-progressive brain disorders.

Cerebral palsy is the most common condition associated with spasticity in children and young people. The guideline covers the management of spasticity associated with cerebral palsy, but not all aspects of the management of cerebral palsy. The impact of spasticity and co-existing motor disorders and their early musculoskeletal complications

Date of Publication: July 2012
Date of Endorsement and Badging: July 2012

Full guideline (PDF, 2.2MB, 302 pages)
NICE guideline (PDF, 506KB, 48 pages)

The management of children and young people with an acute decrease in conscious level (RCPCH)

This guideline aims to give clinicians working acutely a framework to aid the timely and safe care of children and young people (aged four weeks to 18 years) presenting with a decreased conscious level of unknown cause.
The first guideline for 'The Management of Decreased Conscious Level' was published in 2005. Since, there have been changes in the demographics of the children and young people presenting to emergency settings with a decreased conscious level. 
Consistent with the previous guideline, this version emphasises the importance of managing this condition in a standard manner from first presentation to health services, to ensure the best outcome for patients and their families.
The continuing support of the National Reye's Syndrome Foundation UK (NRSF-UK) has allowed the work required to update the guideline.
Date of Publication: April 2015
Date of Endorsement: February 2015

Transition from children’s to adults' services for young people using health or social care services (NICE)

Transition occurs during the period when young people and their families are thinking about their hopes for the future. If people are likely to have care and support needs when they are 18, they need information and advice so that they can make the necessary plans. Despite this, there is evidence that the transition process is variable, with previous good practice guidance not always being implemented.
This clinical guideline focuses on young people passing through transition to adult services with health and/or social care needs. 
It covers the period before, during and after a young person moves from children's to adults' services, and aims to help young people and their carers have a better experience of transition by improving the way it’s planned and carried out.
Date of Publication: February 2016
Endorsed on: March 2016
Full Clinical Guideline (PDF, 1,710KB, 218 Pages)
NICE Clinical Guideline (PDF, 173KB, 31 Pages) 

Urinary Tract Infections in Infants, Children and Young People Under 16 (NICE)

This quality standard covers the care of infants, children and young people under 16 years with a first or recurrent upper or lower urinary tract infection and without known underlying uropathy.

Date of Publication: July 2013
Date of Endorsement: October 2013

Full quality standard (PDF, 170KB, 31 Pages)