Guidelines endorsed by RCPCH - Neurodisability


 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.


NICE: Urinary tract infections in infants, children and young people under 16

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)


 NICE: Spasticity in children and young people with non-progressive brain disorders

 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)

Appendices

NICE guideline (PDF, 506KB, 48 pages)


SIGN: Attention Deficit and Hyperkinetic Disorders in Children and Young People

This guideline covers the evidence-based assessment and management of attention deficit hyperactivity disorder (ADHD) and hyperkinetic disorder (HKD), from which locally appropriate multidisciplinary approaches may be developed. It includes an introduction to the disorder, definitions and concepts, and assessment and management of the disorder using both pharmacological and non-pharmacological interventions.

The guideline is accompanied by a quick reference guide, a list of resources that may be of help to children and young people with ADHD/HKD and their families and a sample shared care protocol.

Date of Publication: June 2001

Date of Endorsement: June 2001

Full guideline (PDF 461 KB)
Quick reference guide (PDF 205 KB)


NICE: Attention Deficit and Hyperactivity Disorder

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.

Date of Publication: September 2008

Date of Endorsement: March 2009

Full guideline (PDF 1.86 MB)
NICE guideline (PDF 333 KB)
Key Messages (PDF 886 KB) - Key messages, presented by Professor Eric Taylor, Professor of Child and Adolescent Psychiatry, at the RCPCH 2009 Spring Meeting

RCPCH comments: 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".

NICE: Autism spectrum disorders in children and young people: recognition, referral and diagnosis

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.

RCPCH comment: 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 660 KB) 


SIGN: Autism Spectrum Disorders

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.

Date of Publication: July 2007

Date of Endorsement: April 2008

Full guideline (PDF 650 KB)
Quick reference guide (PDF 151 KB)

RCPCH comments: 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.


NICE: Epilepsies in Adults and Children in Primary and Secondary Care

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 1.06 MB)
NICE guideline (PDF 349 KB)
Audit and Implementation Presentation (PDF 1.47KB) Presentation on audit and implementation of the NICE Epilepsy guideline by Dr Colin Dunkley, Consultant Paediatrician, presented at the RCPCH 2009 Spring Meeting.


SIGN: Epilepsies in Children and Young People

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 973 KB)
Quick reference guide (PDF 181 KB)


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