Useful Websites

Chapter 1: Involving children, young people and families in care and care decisions

Weblink: Royal College of Paediatrics and Child Health 

The Royal College of Paediatrics and Child Health website is designed for health professionals, children and families as a resource to highlight the importance of child and family participation in healthcare decisions and delivery.

Weblink: Office of the Children’s Commissioner: ‘We would like to make a change: Children and young people’s participation in strategic health decision-making’.

In this document, the Children’s Commissioner investigated how children and young people were involved in strategic healthcare decision making.

Weblink: The Institute for Patient- and Family-Centered Care

The Institute for Patient- and Family-Centered Care (IPFCC) is an American based non-profit organisation founded in 1992 and aims to enhance understanding and practice of patient- and family-centered care. IPFCC serves as a central resource for policy makers and patient and family leaders.

Weblink: International Family Nursing Association

The mission of the International Family Nursing Association (IFNA) is to transform family health by serving as a unifying force and voice for family nursing globally.

Chapter 2: Effective communication with children and young people

Weblink: Child Development Institute   

This website explores communication disorders in children and young people. Although aimed at parents it gives an insight into the nature and incidence of these disorders and provides useful links to other relevant sites.

Weblink: UNICEF Communicating with children

This website provides principles and guidance for children's nurses in order to facilitate their ongoing development of communication skills. Child development and its importance to communication is addressed alongside the rights of children to effective communication and the influence of the media on children.

Weblink: NICE Guidelines (CG89)

This page forms part of a larger set of guidance regarding the safeguarding of children and young people. It reminds children's nurses of the importance of communication with and about children and young people in such situations.

Chapter 3: Assessment and management of pain in children and young people

Weblink: My child is in pain

This website has been developed by researchers working with parents of children who have had day case surgery and with health care professionals who are experts in pain management. The information is especially useful for parents whose children are aged 2–6 years old.

Weblink: The Declaration of Montréal (IASP, 2017)

This is the declaration that access to pain management is a fundamental human right, written by representatives of the International Association for the Study of Pain (IASP).

Weblink: The FLACC scale for pain assessment 

Here you can find the full FLACC (Face, Legs, Activity, Cry, Consolability) scale for pain assessment.

Weblink: Wong-Baker FACES Pain Scale    

This is the official website for the Wong-Baker FACES Pain Scale.

Weblink: Royal College of Nursing (RCN) guidelines on acute pain in children

Royal College of Nursing (RCN) (2009) clinical practice guidelines on the recognition and assessment of acute pain in children.

Weblink: Association of Paediatric Anaesthetists (APA) guidelines on good practice in postoperative and procedural pain management

Guidance by the Association of Paediatric Anaesthetists of Great Britain and Ireland (APA), for practitioners involved in the acute care of children undergoing pain management after surgery or for painful medical procedures.

Chapter 4: Medication: management, administration and compliance

Weblink: NICE Medicines Management for Children Guidelines

Medicines management guidelines for children.

Weblink: Medicines and Healthcare Regulatory Agency (MHRA)

A regularly updated resource regarding medication, devices and all aspects of drug safety.

Weblink: British National Formulary for Children (BNFc)

British National Formulary for Children (BNFc).

Chapter 5: Interprofessional working with children and young people

Weblink: Report of the UK Children’s Commissioners

Report of the UK Children’s Commissioners: UN Committee on the Rights of the Child examination of the fifth periodic report of the United Kingdom of Great Britain and Northern Ireland (2015).

Weblink: Principles of PCP

An outline of the 6 key principles of person-centred planning.

Weblink: Principles of Good Transition (2017)

Read ‘Principles of Good Transitions’ (2017) to find out more about how effective, joined working in transitions help reduce risk and contribute to child and adult safety.

Weblink: NICE (2015) transition from children’s to adult’s services guidelines

Read the NICE transitions guidelines on the transition from children’s to adult’s care services for young people, and reflect on your role in effective joined working.

Weblink: e-Learning resources from the Social Care Institute of Excellence (SCIE) 

Access the SCIE e-Learning resource, the interprofessional and inter-agency collaboration (IPIAC). Undertake the exercises to further explore knowledge and understanding of the principles of IPW.

Weblink: The stages of team development

Access the following link to read more about the stages of team development.

Chapter 6: Organisation and settings for care of children and young people

Weblink: Digital technology in the NHS

This NHS supported website highlights developments in digital technology across the NHS.

Weblink: NMC Code (2015)

The NMC website offers support and guidance for nurses, employers and the public around standards and expectations of all nurses, there are a number of publications including ‘the Code 2015’ and information around hearings that have taken place.

Weblink: Action for Sick Children

This website is a key charity and pressure group who were formed to support originally the care of children in hospital, they have promoted campaigns around parental accommodation and the development of children’s services in the UK.

Chapter 7: Community care and care in non-hospital settings for children and young people

Weblink: Working Together to Safeguard Children (HM Government, 2015)

This document details the roles and responsibilities of community practitioners and the importance of supervision in practice.

Weblinks: Making every contact count

An Implementation Guide and Toolkit for Making Every Contact Count (2014), written by the NHS, gives guidance on how to make the most of the contact time you have with the children and young adults in your care.

This website supports the development, evaluation and implementation of the NHS programme for local communities.

 Weblink: Public health services for children and young people

Further guidance for putting in place public health services for children and young people from 5 to 19 years.
Weblink: The role of school nurses in providing emergency contraception services in education settings (RCN, 2012)

RCN position statement aiming to clarify the responsibilities of school nurses when they are providing emergency contraception to students in education settings. Highlights the importance of appropriate training, experience and working together with education providers and looks at the laws around providing emergency contraception to under 16s and the duty of confidentiality.

Weblink: NHS (2014) Five Year Forward View

The Five Year Forward View sets out some new ideas for the NHS – both in the way it delivers services to people and in the way it manages its funding.

Chapter 8: Law and policy for children and young people’s nursing

Weblink: NMC website

The main NMC website.

Weblink: NMC (2015) Code of Practice

The 2015 NMC Code of Practice.

Weblink: NMC legal framework

The legal framework for regulating nurses and midwives.

Weblinks: Government websites

England

Northern Ireland

Scotland

Wales

Republic of Ireland

Irish Health Reports

World Health Organization

United Nations Convention on the Rights of the Child

Weblink: ‘Francis Report’, 2013 NHS Public Enquiry, Mid Staffordshire

This is the Francis report: Francis, R. (2013) The Report of the Mid Staffordshire NHS Foundation Trust Public Enquiry.

 Weblink: The Bolam Case

This explains the Bolam case.

Weblink: Gillick & Fraser Guildelines

This explores the Gillick and Fraser Guidelines -What’s the difference?

Weblink: NSPCC guidance and resources

https://www.nspcc.org.uk/preventing-abuse/child-protection-system

https://www.nspcc.org.uk/preventing-abuse/safeguarding/deaf-disabled-children

http://www.nspcc.org.uk/preventing-abuse/keeping-children-safe/leaving-child-home-alone

These websites contain useful resources and guidance on child protection issues.

Weblink: Working Together to Safeguard Children (WTTSC)

A guide to working together to safeguard children.

Weblink: The Children Act 1989

The Children Act 1989 (or the equivalents in other countries) is an example of key legislation which you should explore in more depth. This sets out the legal expectations and requirements around the protection and welfare of children.

Weblink: United Nations Convention on the Rights of the Child

The UNCRC is important reading for all children and young people’s nurses.

Chapter 9: Safeguarding children and young people

Weblink: CEOP Assessment

A thematic assessment to increase understanding of child sexual exploitation.

Weblink: NSPCC

The NSPCC provides a wealth of advice and support on safeguarding children and young people.

Weblink: UK Government

A government website that is a useful source of the current legislation, policy and procedures in safeguarding children and young people.

 Weblink: London Child Protection

An excellent resource for London Child Protection Procedures and Practice Guidance

Chapter 10: Genertics and epigenetics: effects on children and young people

Weblink: Other types of diabetes

 http://www.diabetesgenes.org/

These two weblinks explore genetic types of diabetes including maturity-onset diabetes of the young (MODY).

Weblink:  National Genetics and Genomics Education Centre (NGGEC)

The National Genetics and Genomics Education Centre is an excellent UK-based website with multiple videos which encompasses both genomic information and the role of genomics in modern day health care for health professionals.

Weblink: Family pedigree

This link will help you explore how to undertake and record a family pedigree.

Weblink: Genie guide

This guide is aimed at non-specialist health professionals, and explores different approaches to explain genetic risk and probability: Nichols, W (2009) Calculation and communication of genetic risk for non-geneticists, Leicester, University of Leicester.

Chapter 11: Infant mental wellbeing and health or ‘how to grow a healthy adult’

Weblink: Infant mental health

This is an extremely interesting resource from an expert in the area with contemporary relevance, commentary and research findings.

Weblink: Safeguarding children and young people

This policy paper by the Charity Commission for England and Wales explains safeguarding requirements in line with the United Nations Convention on the Rights of the Child and the requirements of Children Act 2004. It explains that there must be a designated person responsible for welfare of children in their area, organisation or jurisdiction, including schools, sports venues, youth clubs and any place or time where children and young people are in attendance. 

Weblink: The Baby-Friendly Initiative

The Baby-friendly Hospital Initiative (BFHI) was launched by WHO and UNICEF in 1991, following the Innocenti Declaration of 1990. The initiative is a global effort to implement practices that protect, promote and support breastfeeding. To help in the implementation of the initiative, different tools and materials were developed, field-tested and provided, including a course for maternity staff, a self-appraisal tool and an external assessment tool. Additional tools were developed afterwards, such as monitoring and reassessment tools. Since its launching BFHI has grown, with more than 152 countries around the world implementing the initiative. The initiative has measurable and proven impact, increasing the likelihood of babies being exclusively breastfed for the first six months.

Related links: http://www.who.int/nutrition/topics/infantfeeding/en/

Weblink: The Ounce and other US resources for infant and child mental health

https://www.theounce.org/

www.zerotothree.org

www.psychology.sunysb.edu/attachment

Useful US organisations focused on childhood mental health and wellbeing.

Weblink: Child Psychotherapy Trust

An overview of the experiences of the early years and the importance of evidence informing early years intervention.

The Child Psychotherapy Trust Annual Review 2001–2002 (2002).

Weblink: National Child and Maternal Health Network

This is a good maternal and child health resource repository, especially for data and statistics.

Weblink: Family Nurse Partnership (FNP)

This weblink is for the Family Nurse Partnership’s (FNP) initial report and interim report in 2016. FNP is now involved in a follow-up study, tracking the progress of the families until the children reach the age of six. Those findings will be published in 2018. This 2016 interim report in the link above indicated UK findings are in contrast to the results of three other trials that evaluated the US programme. Researchers there found improvements across the board in parents and their children; smoking levels fell and fewer women were pregnant within two years of their first pregnancy. The differences between the studies, according to Michael Robling, who led the UK research, could reflect the fact that women in the US lack universal NHS services. It is also possible that the American teenagers were from more deprived backgrounds and so carried more risk factors.

FNP is one of a handful of early years programmes to be awarded a 4+ evidence rating in the  2016 UK Early Intervention Foundation ‘what works’ reports which  highlights ‘improve, not prove’ as a guiding principle for evaluation. 

This reflects the FNP National Unit’s approach to the FNP 'Next Steps' programme, a cycle of adaptation and testing which builds on learning from the 'Building Blocks' trial undertaken by Cardiff University and published in The Lancet and by Cardiff University in October 2015:

http://medicine.cardiff.ac.uk/primary-care-public-health/research/early-years/completed-projects/building-blocks/

Weblink: Children’s views on their lives and wellbeing

Jacob’s Foundation report on Children’s views on their lives and well-being in 15 countries (2015)

Weblink: Health and social care websites for each country

The following weblinks are for each of the health and social care websites for each country:

Weblink: UK Association of Infant Mental Health

This is the UK Association of Infant Mental Health website and contains research, evidence and posts conference details for those interested in the topic.
Weblink: Institute of Health Visiting

The relatively newly established website for the Institute of Health Visiting

Weblink: Center on the Developing Child

An excellent resource on all things to do with child development.

Weblink: Scottish resources for infant and child mental health

This Scottish Organisation research, develop and implement evidence-based parenting programmes.

Weblink: Begin Before Birth

An excellent resource for parents and professionals on topics to do with infant mental health.

Weblink: The Mental Elf

Innovative website for all things mental health, across all  age ranges.

Weblink: The Early Interventions Foundation (UK)

Weblink: The British Institute for Human Rights

Weblink: Action for Children

Interesting web resources for all children.

Weblink: Council for Disabled Children

Particular resources for CYP and families who have disability.

Weblink: UK Social Care Institute for Excellence

Excellent and wide ranging resources across all age ranges.

Weblink: The Kings Fund

UK Health and Social Care website for ideas that aim to change care.

Weblink: Queens University Belfast School of Sociology and Social Policy

Weblink: Access Research and Knowledge

Exceptional website for Access Research and Knowledge (in Northern Ireland).

Weblink: Eurochild

A network of organisations working with and for children throughout Europe, striving for a society that respects the rights of children. Their aim is to influence policies, build internal capacities, facilitate mutual learning and exchange practice and research.

Weblink: Cochrane UK

This organization promotes evidence-based and better informed decision-making in health care within the UK.

Chapter 12: Complexities of the developing and differing needs of children and young people

Weblink: Cochrane Reviews

The leading resource for systematic reviews in health care.

Weblink: YoungMinds

YoungMinds is one of the UK’s leading charities championing the wellbeing and mental health of young people.

Weblink: NICE Guidelines

NICE guidelines and health standards offer a wealth of information to help inform health education interventions.
Weblink: mymind.org.uk

This is an excellent resource which has been created by children with the support of professionals.

The site has been developed for everyone interested in the mental health and wellbeing of children across Cheshire and Wirral but it is relevant to children, nurses and other professionals from all over the UK.

Chapter 13: Factors influencing wellbeing and development in children and young people

Weblink: Health Inequalities

Develop your understanding of the factors which influence health by reading Health Inequalities and the Social Determinants of Health (RCN 2012) and discuss with your mentors and peers.

Weblink: The Good Childhood Report (2015)

Children identify what are important influences in their lives.  We need to understand the key worries for the CYP in our care, so we can ensure we tailor care packages that meet these needs.

Weblink: The NSCCC guide assessing parenting capacity

An NSPCC factsheet February (2014).

Weblink: HM Government guides on tackling violence

Together We Can End Violence Against Women and Girls: A Strategy (2009)

Tackling Violence Against Women and Girls: A guide to good practice communication (2009)

www.equalities.gov.uk/news/vaw_guidance.aspx

Extend your knowledge on the effects of domestic abuse on children and families by reviewing some of the available government literature.

Weblink: Definitions of poverty

Read the definitions of poverty by clicking the above link to The Poverty Site, Relative Poverty, Absolute Poverty and Social Exclusion.

Weblink: The National Children’s Bureau (NCB)

The National Children’s Bureau website.

Chapter 14: Universal screening and the role of the health visitor

Weblink: Foundation Years – Great early years and childcare

A website which shares helpful information about early years and childcare.

Weblink: FNP website

Universal partnership plus provides ongoing support from the health visiting team and a range of local services, to deal with more complex issues over a period of time. These include services from Children’s Centres, other community services including charities and, where appropriate, the Family Nurse Partnership.
Weblink: Community Practitioner and Health Visitors Association (CPHVA)

The Community Practitioner and Health Visitors Association/ Unite is the leading professional body and union representing HVs, School Nurses and Community Nursery Nurses.

Weblink: Institute of Health Visiting (iHV)

The Institute of Health Visiting is a new professional body.  It provides many educational resources and professional development opportunities.

Weblink: Healthy Child Programme

Different countries of the UK have their own version of the Healthy Child Programme.  The link below is to the one produced by the Department of Health for England.

Weblink: BMJ Blogs: Anna’s student nursing experience

A child nursing student perspective on the HV Placement.

Chapter 15: Assessment and care of children and young people with acute needs

Weblink: Traffic light system (NICE)

The National Institute for Health and Care Excellence (NICE) have created a traffic light system for identifying risk of serious illness.

Weblink: Screening tools

STAMP is a screening tool which helps assess a child showing signs of malnutrition

PYMS is another screening tool to help assess malnutrition in children

You can also use the UK-WHO Growth Chart (RCPCH, 2016) to help assess signs of malnutrition.

Weblink: CAPT

Information leaflets on prevention and safety in the home should be available in all health care settings. They need to be engaging and colourful to appeal to parents and carers. This is an example on child accident.

Weblink: NSPCC bruises and fractures

NSPCC (2012a) Core-Info: Fractures in Children

NSPCC (2012b) Core-info: Bruises on Children. Look up your local safeguarding guidelines including those on the management of bruises or marks in non-ambulant babies/children.

Weblink: Caring for plastercasts

Caring for plastercasts, NHS Choices.

Weblink: NSPCC Head injury

NSPCC (2014) Core-Info: Head and spinal injuries in children

Weblink: BMJ Learning
Access this module on Sepsis in Children developed by Plunkett and Tong (2015).  It covers the epidemiology of sepsis in children, causes and ways in which it can be prevented and how to recognise the clinical signs of sepsis.

Weblink: NICE (2014) Head Injury: Assessment and Early Management Guidelines

These cover:

• Pre-hospital assessment, advice and referral to hospital.

• Immediate management at the scene and transport to hospital.

• Assessment in the emergency department.

• Investigating clinically important brain injuries.

• Investigating injuries to the cervical spine.

• Information and support for families and carers.

• Transfer from hospital to a neuroscience unit.

• Admission and observation.

• Discharge and follow-up.

Weblink: Triangulation of thought

This blog is written by Zoe Picton-Howell. Her son Adam was blind and had cerebral palsy but loved to tweet and write poetry. Sadly he died of sepsis in 2015 aged 15. Read the entries where his mother details the challenges she and Adam faced in being heard when Adam was unwell.

Weblink: Spotting the sick child

Register for an account on the Spotting the Sick Child website. This is an interactive tool commissioned by the Department of Health and Health Education England to support healthcare professionals in the assessment of acutely unwell children.

Weblink: Spotting sepsis

Sepsis guidelines and spotting sepsis.

Chapter 17: Caring for children and young people in the peri- and postoperative recovery period

Weblink: SBAR

SBAR (Situation, Background, Assessment, Recommendation) gives a structured toolkit for communicating important information.

Weblink: Safe transfer of children to and from theatre

The Royal College Nursing (2011) have developed a good practice guidance in relation to safe transfer of children to and from theatre.

Chapter 18: Care of children and young people with respiratory problems

Weblink: Different breath sounds

This website contains audio of different breath sounds to help you learn what to listen for on auscultation.

Weblink: NHS Choices, Ashma: Inhaler Techniques

Useful video on inhaler technique in children.

Weblink: Spotting the sick child

Supported by the Department for Health and Royal College of Paediatrics and Child Health, this website is a training tool for healthcare professionals. You can use this to learn about respiratory assessment and management of the acutely unwell child.

Chapter 19: Care of children and young people with cardiovascular problems

Weblink: Cardiopulmonary bypass

Children having open-heart surgery will undergo cardiopulmonary bypass. Find out more about this here.

Weblink: Cardiac catheter procedure

Almost all children with CHD will undergo a cardiac catheter procedure for either diagnostic or procedural purposes. More information on cardiac catheter procedure can be found here.

Weblink: Rhythm strips

http://ekg.academy

ECG’s can be difficult to interpret, but it is important that you can recognise the difference between normal (sinus rhythm) and abnormal rhythms. Use the websites above to explore different arrhythmias and compare these to sinus (normal) rhythm.

Weblink: Institute for Healthcare Improvement (IHI)

Institute for Healthcare Improvement: some very good resources on aspects of health care including use of the SBAR tool which aims to standardise  healthcare communications and reporting/escalating information allowing all parties to have key clear timely information which can aid effective decision making.

Weblink: The Cincinnati Children’s Hospital

The Cincinnati Children’s Hospital website offers comprehensive information for both health professionals and patients/families.

Weblink: Children’s Heart Foundation

The Children’s Heart Foundation website has annotated diagrams of heart conditions, useful fact sheets which can be printed off and links to other useful sites such as the British Heart Foundation and Great Ormond Street.

Weblink: Congenital Hearts Defects UK

Congenital Hearts Defects UK is a very useful website. It contains information about anatomy and physiology of CHD, provides detail regarding presentation, signs/symptoms and types of treatment/surgery, and includes syndromes linked to cardiac defects.

Chapter 20: Care of children and young people with neurological problems

Weblink: Sun-setting eyes picture

In infants and young children there can be ‘sun-setting’ eyes where the eyes appear to be in a permanent downward gaze and the sclera is observable between the upper eyelid and the iris.

Weblink: Glasgow Coma Scale

A practical method for assessing impairment of conscious level.

https://www.nursingtimes.net/clinical-archive/accident-and-emergency/forty-years-on-updating-the-glasgow-coma-scale/5075667.article

Teasdale, G., Allan, D.,  Brennan, P., McElhinney, E. and Mackinnon, L. (2014) ‘Forty years on: updating the Glasgow Coma Scale’, Nursing Times, 110 (42): 12–16. Article on the Glasgow Coma Scale.

An adapted version of the Glasgow Coma Scale.

http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2008.02042.x/pdf

Fenella, J., Kirkham, C., Newton, R.J.C. and Whitehouse, W. (2008) ‘Paediatric coma scales’, Developmental Medicine & Child Neurology, 50: 267–274. Article on modified Glasgow Coma Scales.

Weblink: Ventriculo-Peritoneal Shunt

Mullan, E., Lucas, C., Mackie, S. and Carachi, R. (2014) ‘Audit of ventriculoperitoneal shunt infections in paediatric patients, 2006–2013’, Scottish Medical Journal, 59 (4): 198–203.

Weblink: Third endoscopic ventriculostomy

David I. Sandberg, (2008) ‘Endoscopic management of hydrocephalus in pediatric patients: a review of indications, techniques, and outcomes’, Journal of Child Neurology, 23 (5): 550–560.

Weblink: Dangers of shaking babies

Abusive Head Trauma (AHT) and Nonaccidental Injury (NAI) - the dangers of shaking babies.

Weblink: Cycle Smart Foundation

A website promoting all aspects of safer cycling and, in particular, the use of cycle helmets.

Weblink: Epilepsy guidelines (NICE)

NICE Guideline (2014) Head injury: assessment and early management.

NICE Guideline:  Epilepsies: diagnosis and management

Weblink: Neuroscience for Kids

This site has been created for students who would like to learn about the nervous system.

Weblink: Young Epilepsy

The National Centre for Young People with Epilepsy.

Weblink: Headway: the brain injury association

For more information about support services for families with children with acquired brain injury.

https://www.epilepsy.org.uk/

Weblink: Epilepsy Society

Weblink: The Childrens Trust

For more information about support services for families with children with acquired brain injury.

Weblink: SHINE

A charity for spina bifida and hydrocephalus which offers further information for health professionals.

Chapter 21: Care of children and young people with urinary/renal problems

Weblink: Pews charts

Age-related paediatric early warning score charts.

Weblink: SBAR

Situation, Background Assessment Recommendation (SBAR) technique to escalate concerns.

 Weblink: NICE UTI guidelines

Evidence-based research regarding best practice regarding urinary tract infection in under 16-year-old children in relation to the diagnosis and management.

Weblink: Spotting the sick child

A website to help healthcare professionals to identify those children who have serious illnesses. It incorporates national guidelines with videos and interactive material to increase the learner’s knowledge.

Weblink: NHS choices - UTIs

NHS choices website giving access to information about urinary tract infections, their treatment and management.

Weblink: ERIC

A website that provides a variety of learning resources for healthcare professionals who care for children with continence issues: ERIC (Education and resources in improving childhood incontinence).

Weblink: Crosswords

http://www.whenwecrosswords.com/crossword/the_kidneys_/9152/crossword.jsp

http://www.whenwecrosswords.com/crossword/kidney_/220440/crossword.jsp

Chapter 22: Care of children and young people with endocrine problems

Weblink: British Society for Paediatric Endocrinology and Diabetes Guidelines (BSPED)

These guidelines from the British Society for Paediatric Endocrinology and Diabetes cover the management of DKA in children and young people under the age of 18 years for Type 1 and Type 2 diabetes.

Weblink: Diabetic Ketoacidosis

Go to BSPED website to find out more about DKA and try activity 22.1.

 Weblink: Hypos and hypers  

A guide to hypos and hypers.

Weblink: Measuring in schools

Government guidelines for measuring children in schools.

Weblink: Measuring CYP

NHS guidelines for measuring a child or young person.

Weblink: Growth charts

Growth charts used in the UK.

Weblink: Growth hormone

An article on the NICE website about growth hormone.

Weblink: Testing for congenital hypothyroidism

NHS screening information for congenital hypothyroidism.

Weblinks: Key support groups

https://www.diabetes.org.uk/

http://www.jdrf.org/

http://www.childgrowthfoundation.org/

http://www.pituitary.org.uk/

http://www.livingwithcah.com/

http://www.verity-pcos.org.uk/

http://www.btf-thyroid.org/

http://tss.org.uk/

http://www.dsdfamilies.org/

http://www.bsped.org.uk/

https://www.eurospe.org/

http://www.endocrinology.org/

These are the key support group websites with excellent resources or society websites with care pathways and guidelines.

Weblink: Management of diabetes

International guidelines for the management of diabetes

NICE guidelines for the management of diabetes

Weblink: Congenital Hyperinsulinism

Weblink: Short stature

Weblink: Turner Syndrome

Weblink: Panhypopituitarism

Weblink: Obesity

Weblink: Endocrine effects of cancer treatment

http://www.aftercure.org/

Chapter 23: Care of children and young people with immunological problems

Weblink: Naming HIV to children

CHIVA guidelines for talking about HIV to children.

Weblink: National programmes for immunisation

Internationally childhood immunisation schedules are an essential part of public health programmes although vaccines delivered does differ between countries. Compare different national programmes and consider why there may be differences. This can be explored further through the links below.

UK:

USA:

Australia:

European Countries:

South Africa:

Weblink: WHO Immunisation, Vaccines and Biologicals

Keep up to date with the recommended global immunisation programme from the World Health Organization.

Weblink Primary immune deficiencies

Further information about primary immune deficiencies.

Weblink: Children’s HIV Association (CHIVA)

Review children’s HIV resources and guidelines in the UK.

Weblink: AVERT website

Consult the excellent AVERT website for up to date global evidence and data on all aspects of HIV and AIDS across the age ranges.

Chapter 24: Care of children and young people with musculosketetal problems

Weblink: Pressure ulcer

Prevention and Treatment of Pressure Ulcers: Quick Reference Guide (2014) from the National Pressure Ulcer Advisory Panel, the European Pressure Ulcer Advisory Panel and the Pan Pacific Pressure Injury Alliance.

Weblink: Neurovascular assessment

Neurovascular assessment, RCN guidance.

Weblink: How to increase vitamin D supplement use

Vitamin D: increasing supplement use among at-risk groups overview.

Vitamin D deficiency in the UK is a growing concern with evidence linking it a number of children’s orthopaedic problems.

Weblink: Common orthopaedic disorders

The International Hip Dysplasia Institute provides a wealth of evidence-based literature for the practitioner and essential information and advice for parents. 

The Perthes Association is a charitable organisation offering families help and advice.

For the management of Perthes Disease, the above is very useful.

An overview of slipped capital femoral epiphysis.

http://emedicine.medscape.com/article/1355974-overview#a2

http://emedicine.medscape.com/article/1259772-overview

Medscape give a complete overview of bow legs and knock knee.

http://emedicine.medscape.com/article/1250420-overview

Medscape also gives an overview of Blounts disease.

www.ponseti.info

This website provides a wealth of information about congenital talipes equinovarus (‘club foot’) for health professionals and families.

http://www.chop.edu/conditions-diseases/amplified-musculoskeletal-pain-syndrome-amps/about#.V3P6WLgrKW8

http://www.clinexprheumatol.org/article.asp?a=1186

Dr Sherry in Philadelphia has published extensively on amplified musculoskeletal pain. These two websites will give the reader a real insight into the condition.

http://www.rch.org.au/paed_trauma/manual/11_How_are_children_different/

Take a look at this website to better understand how children are different to adults when it comes to musculoskeletal trauma.

Weblink: Hamish’s journey with developmental dysplasia of the hip (DDH)

Hamish’s Journey with DDH.

Weblink: Pavlik Harness parents’ guide

A parents’ guide to using the Pavlik Harness.

Weblink: Spica life

Spica life shares real patient stories about hip dysplasia.

Weblink: Hip Pose

Hip pose suggests suitable clothing for a child in a spica.

Weblink: Global club foot

The Global Club Foot Initiative website.

Weblink: Club foot patient

Club foot patient story: James Boorah.

Weblink: MDT approach to treating Amplified Pain Syndrome

This article explains how Great Ormond Street Hospital treat children with chronic pain syndromes, using a multidisciplinary team consisting of a clinical psychologist, occupational therapist and physiotherapist.

You can also read the following book chapter:

Judd. J. (2014) ‘Common childhood orthopaedic conditions, their care and management’, in S. Clarke and J. Santy-Tomlinson (eds), Orthopaedic and Trauma Nursing: An Evidenced-based Approach to Musculoskeletal Care. Oxford: Wiley Blackwell  

Weblink: RCN consensus guidance

Guidance for the early detection of acute limb compartment syndrome (ALCS). 

Weblink: Safeguarding disabled children

Safeguarding Disabled Children Practice Guidance.

Weblink: RCN

RCN Benchmarks for children’s orthopaedic nursing care.

Weblink: International Hip Dysplasia Institute

A wealth of evidence-based literature for the practitioner and essential information and advice for parents.

Weblink: RCN, Guidance on pin site care

External fixators and Pin site care. Report and recommendations from the 2010 Consensus Project on Pin Site Care. 2011.

Chapter 25: Care of children and young people with haematological problems

Weblink: LearnBloodTransfusion

The e-learning resource LearnBloodTransfusion is recommended by blood transfusion services in the British Isles.

Weblink: Blood transfusion - NICE guideline

National Institute for Health and Care Excellence (2015) Blood transfusion NICE guideline NG24 Methods, evidence and recommendations, pp. 201–222.

Weblink: British Psychological Society

Diagnosis and monitoring of blood disorders involves venepuncture. Read more about ways of reducing the distress for children and young people.
Gaskell, S. (2010) Good Practice Guidelines: Evidence-based Guidelines for the Management of Invasive and/or Distressing Procedures with Children. Leicester: British Psychological Society.

Weblink: SHOT (Serious Hazards of Transfusions)

Since 1996, Serious Hazards of Blood Transfusion (SHOT) has collected and analysed anonymised information on adverse events and reactions in blood transfusion from all healthcare organisations that are involved in the transfusion of blood and blood components in the United Kingdom.  Where risks and problems are identified, SHOT produces recommendations to improve patient safety.  The recommendations are put into its annual report which is then circulated to all the relevant organisations including the four UK Blood Services, the Departments of Health in England, Wales, Scotland and Northern Ireland and all the relevant professional bodies as well as circulating it to all of the reporting hospitals.  As haemovigilance is an ongoing exercise, SHOT can also monitor the effect of the implementation of its recommendations.

Weblink: JPAC

For further information and guidance, the Joint United Kingdom (UK) Blood Transfusion and Tissue Transplantation Services Professional Advisory Committee provide best practice guidance on various blood products mentioned in this chapter, which can be required in caring for children with blood disorders.

Weblink: GOV.UK

For further information about use of immunoglobulin read the Department of Health (2011) Clinical Guidelines for Immunoglobulin Use (update to second edition).

Chapter 26: Care of children and young people with dermatological problems

Weblink: The structure and functions of the skin

This is a useful revision source for the skin. See also the A&P link online [BT1] for this chapter.

Weblink: BNF (British National Formulary)

Up-to-date drug information sourced from an extensive range of the world’s most trusted resources.

Weblink: Primary Care Dermatology Society (PCDS)

Treatment options for acne.

Weblink: Victoria Climbie

BBC article regarding Victoria Climbie whose abuse was overlooked as the first impression was that she had scabies.

Chapter 27: Care of children and young people with thermal injury

Weblink: iBID

International Burn Injury Database.

Weblink: Fluid resuscitation for burn management

An article about the debate around fluid management strategies.

Weblink: Burn dressings - superficial and partial thickness

An article from Cochrane Review titled ‘Dressings for superficial and partial thickness burns’ (Wasiak et al., 2013).

Weblink: Children’s Burns Research Centre

The Scar Free Foundation Centre for Children’s Burns Research is a UK based consortium paving the way in creating a body of new research specific to burns in children. It follows three themes of work; clinical, prevention and psychosocial adjustment and support. Many of the projects are collaborative, multi-centre studies involving a number of burn services from all over the UK. Learn more about the Centre’s work through their website/ contact.   

Weblink: Child Protection Evidence

You can explore the work to date on the development of a burns and scalds triage tool that can be used to determine the likelihood of intentional versus unintentional injury.

Weblink: The Children’s Burns Trust

The Children’s Burns Trust (Charity no: 1082084) are an exemplary resource for CYP, families and also healthcare professionals. A key area of their work is in burn injury prevention where they provide a range of online educational resources alongside delivering specific awareness campaigns. There is also an opportunity to get involved and support their work.

Chapter 28: Care of children and young people with fluid and electrolyte imbalance

Weblink: Gastroenteritis in Under 5s

National Institute for Health and Clinical Excellence (NICE) (2009)Diarrhoea and Vomiting Caused by Gastroenteritis in Under 5s: diagnosis and management.

This evidence-based guideline underpins clinical decision-making and care delivery for children under 5 who present with diarrhoea and vomiting.

Weblink Leroy Elders:

https://www.theguardian.com/lifeandstyle/1999/jul/28/familyandrelationships.features101

These websites tell the story of Leroy Elders who died in 1999 from salt poisoning. Try the Safeguarding Stop Point activity in the chapter and check your answer online (Safeguarding Stop Point Answer 28.1).

Weblink: Intravenous fluid therapy

The term ‘fluid resuscitation’ is often used to refer to fluid replacement via intravenous therapy and should not be confused with cardiopulmonary resuscitation. Fluid resuscitation is used to replace volume following fluid loss due to hypovolaemic shock or a fluid shift due to a pathological process. Intravenous therapy is used when fluids need to be replaced rapidly or when the oral route is not viable; for example, due to vomiting or consciousness level. Fluid resuscitation is therefore a common procedure and you may be involved in the fluid resuscitation of a child or young person in any acute placement setting. Current NICE guidelines recommend the use of glucose-free crystalloids (e.g. 0.9% sodium chloride), at 20ml/kg given as a bolus over less than 10 minutes, but for term neonates, the recommended volume is 10-20ml/kg (NICE, 2015). A second and third bolus can be given, but expert advice from the paediatric intensive care team is recommended (NICE, 2015). For more information on fluid resuscitation and intravenous therapy, go to Intravenous Fluid Therapy in Children and Young People in Hospital. NICE guidelines NG29.

Weblink: Dehydration in children

Tidy, C. (2014) Dehydration in children. Patient website. Written for health professionals, but accessible to the public, this is a peer-reviewed article on dehydration in children.

Weblink: Notifiable diseases

Reporting certain notifiable infectious diseases aims to help prevent their spread and reduce the risk of epidemic. A list of notifiable diseases requiring report is available via the link above.

Weblink: Spotting the Sick Child

The Royal College of Paediatrics and Child Health and the Department of Health, as well as others, support this educational resource. It contains a section on dehydration.

Chapter 29: Care of children and young people with gastrointestinal problems

Weblink: Constipation in children: diagnosis and management

Constipation in children - diagnosis and management (NICE guidelines, 2010).

Weblink: Pre-procedure pregnancy check

Pre-procedure Pregnancy Checking in Under 16s: Guidance for Clinicians (RCPCH, 2012).

Weblink: Daniel Pelka Case Review

Read the ‘Daniel Pelka serious case review: lessons to be learned briefing’. Try the Safeguarding Stop Point activity in the chapter and check your answer online (Safeguarding Stop Point Answer 29.1).

Weblink: Sepsis Trust

The Sepsis Trust have produced tools to aid early detection and management in various settings and across various age ranges.

Weblink: NICE guidance on Crohn’s disease

Quality standard for treating Crohn’s disease.

Weblink: NICE guidance on Gastro-oesophageal Reflux Disease

NICE, Gastro-oesophageal Reflux Disease in Children and Young People: Diagnosis and Management, NICE guideline [NG1]. This guideline, published in 2015, outlines the diagnostic criteria and management of children with gastro-oesophageal reflux disease (GORD).

Weblink: NICE guidance on Inflammatory Bowel Disease

NICE, Inflammatory Bowel Disease, Quality standard [QS81]. This quality standard describes the high-priority areas for quality improvement in IBD, detailing diagnosis and management of the condition in adults, children and young people.

Chapter 30: Discharge planning and transfer for children and young people

https://www.nmc.org.uk/standards/code/

The Code: Professional Standards and Behaviour for Nurses and Midwives (NMC, 2015) gives guidance on documentation and record keeping.

Weblink: Together for Short Lives

Together for Short Lives is a leading UK charity for children with life-threatening and life-limiting conditions its website contains lots of excellent resources and information for parents/carers and practitioners.

Weblink: Discharging babies and children with life limiting illness

This website has useful links for practitioners in regards discharging babies and children with life limiting illness.

Weblink: Twitter

@KathEvans2

@NYCPJournal

@eurochild_org

@Wecypnurses

@Wellchild

@Action4sickchildren

The above Twitter accounts deal with the views and needs of children and young people.

Weblink: Facebook

RCN Children and Young People’s Forums (various remit and foci)

The above Facebook page deals with the views and needs of children and young people.

Weblink: What? Why? Children in Hospital

The What? Why?Children in Hospital program prepares children, parents and carers for a positive hospital experience through sharing age-appropriate videos and information. Resources are available through this website.

Weblink: The National Managed Clinical Network for Children with Exceptional Healthcare Needs (CEN)

The National Managed Clinical Network for Children with Exceptional Healthcare Needs (CEN) started in March 2009, with the aim to strengthen specialist services for children with complex and exceptional healthcare needs in Scotland. Parents/carers, voluntary sector organisations and professionals are invited to join the network and attend working group meetings and events.This website provides a good source of information for professionals and carers.

Weblink: Great Ormond Street Hospital

Great Ormond Street Hospital is the UK’s largest children’s hospital. This website has a number of good discharge planning information leaflets for parents and carers.

Chapter 31: Care of highly dependent  and critically ill children and young people

Weblink: PCC transport services

Look up your local PCC transport service. These websites have very useful information on PCC transport principles and process, clinical management of different conditions and information on parental advice.

Weblink: PCCU alarms

If your university has access to this journal, you can read this article to hear of Blaise Fenn’s experience, as a 15-year-old ex-PICU patient, of PCCU alarms:

Fenn, B. (2014) ‘Coma alarm dreams on intensive care’, Intensive Care Medicine, 40: 1568–9.

Weblink: National Tracheostomy Safety Project (NTSP)

The National Tracheostomy Safety Project website.

Weblink: Different breath sounds

Breath sounds reference guide with audio

Chapter 32: Care of the neonate

Weblink: BAPM website

BAPM neonatal networks.

Weblink: BLISS baby report

Bliss Baby Report 2015: Hanging in the Balance explores the current state of nursing and medical staffing in neonatal units, why these units are under pressure and how they are coping. 

Weblink: Confessions of a preemie

A neonatal nurse has assumed the voice of a pre-term baby in order to help parents understand the different needs of their pre-term infant.

Weblink: Screening website for health professionals

Blood spot screening for newborns.

Weblink: Lullaby Trust

The Lullaby Trust provides specialist support for bereaved families and anyone affected by a sudden infant death.

Weblink: Confessions of a Preemie

A neonatal nurse has assumed the voice of a preterm baby in order to help parents understand the different needs of their preterm infant. The advice offered is not only relevant to parents but will provide you with insight into the preterm infant’s developmental needs in light of the environmental stressors just discussed. 

Weblink: Screening an infant

Weblink: Lullaby Trust

Gives information on how to prevent SIDS.

Weblink: Department of Health Toolkit for High Quality Neonatal Services

The document identifies the structure and principles needed to deliver neonatal care across the four countries of the UK.

Weblink: RCN Career, Education and Competence Framework for Neonatal Nursing in the UK

A useful document to enable you to explore the possible career opportunities in neonatal nursing.

Chapter 33: Care of children and young people with a malignant condition

Weblink: Safe use of cytotoxic drugs

This page provides information to employers and employees on the occupational hazards associated with cytotoxic drugs and the precautions to take when handling them.

Weblink: Bone marrow transplantation

The Macmillan website gives an overview of bone marrow transplantation for children’s cancers.

Weblink: Cancer Research UK, Monoclonal Antibodies (MAB)

This website hosts four short videos about immunotherapy drugs and monoclonal antibodies.

Weblink: Macmillan Cancer Support

This website provides information on types and treatments of childhood cancers in the UK and Ireland. The information is written in lay language and can be used for parents but is also useful for students.

Weblink: Macmillan Cancer Support - Radiotherapy for head and neck cancers

Read more about radiotherapy for children.

Weblink: Children with Cancer UK

Meet Lucy and consider how she presented with a brain tumour, and also the impact and treatment on her and her family.

Weblink: University Hospitals Birmingham NHS Foundation Trust, Therapy Based Long Term Follow Up: Practice Statement, 2nd edn

Read about the long term follow-up management for childhood cancer.

Weblink: Childhood Cancer and Leukaemia Group

This website contains a lot of important information about, childhood cancer, treatment and trials.

Weblink: Health talk.Org

Health Talk.Org is a result of a unique partnership between a charity called DIPEx and The Health Experiences Research Group or ‘HERG’ at The University of Oxford’s Nuffield Department of Primary Care. Patients share their experiences on a range of health issues. One of the health issues covered is cancer in young people and these film clips provide insights into young people’s experiences of cancer and treatment.

Chapter 34: Care of children and young people with life limiting illness

Weblink: NCPPC Glossary of Terms
National Clinical Programme for Palliative Care glossary of terms.

Weblink: Together for Short Lives Neonatal Care Pathway

Read this in conjunction with the What's the Evidence section in Chapter 34..

Weblink: Palliative care practical guidance

Practical guidance for the management of palliative care on neonatal units.

Weblink: Moving to Adult Services

A guide for any young person with a life-threatening condition who is thinking about their future as an adult and wanting to consider their options and plan ahead in terms of education, employment and living arrangements, as well as what’s important to them in other areas of their life.

Weblinks: Useful Organisations

Batten Disease Family Association

http://www.bdfa-uk.org.uk/
A charity offering a wide range of support resources and facilitating awareness and research to help families, carers and professionals caring for a child/young adult with Batten disease in communities across the UK.

Child Bereavement Charity
http://www.childbereavementuk.org/

The Child Bereavement UK is the UK's leading charity that supports families and educates professionals both when a child dies and when a child is bereaved. Every year the charity trains around 5000 professionals across health care, social care, education, the emergency services and the voluntary sector. It also provides a national support and information service, award-winning resources, an interactive website with online forums, and Buckinghamshire-based family bereavement support.

Childhood Bereavement Network

http://www.childhoodbereavementnetwork.org.uk/
A multi-professional, national federation of organisations who work in various settings with bereaved children and young people, their families and other caregivers.

Children's Heart Federation

http://www.chfed.org.uk/
The central point for all UK children's heart support groups.

Children's Hospice International

http://www.chfed.org.uk/
Non-profit organisation promoting hospice support through paediatric care facilities and providing education, training and technical assistance to those who care for children with life-threatening conditions and their families.

Children's Liver Disease Foundation
http://www.childliverdisease.org/

A charity providing research, education and emotional support to families and young people with liver disease.

CLIMB (Metabolic Disease Support Group)

http://www.climb.org.uk/
A charity offering information, advice and support to adults, carers family members, professionals and parents on over 550 metabolic diseases.

Contact A Family

http://www.cafamily.org.uk/
A charity providing advice, information and support for families with disabled children.

Council for Disabled Children

http://www.councilfordisabledchildren.org.uk/
Provides a national forum for the discussion and development of a wide range of policy and practice issues relating to service provision and support for disabled children and young people and those with special educational needs.

Cystic Fibrosis Trust
http://www.cysticfibrosis.org.uk

A charity offering support and advice to families.

Duchenne Family Support Group

http://dfsg.org.uk/
A charity offering support and advice to families.

Every Disabled Child Matters

http://www.edcm.org.uk/
The campaign to get rights and justice for every disabled child.

Give them a Break

http://www.givethemabreak.co.uk/
Based in Devon, Give them a Break work with charities to provide free holiday accommodation to those who really deserve a break away from their home surroundings.

Hospice UK
http://www.hospiceuk.org/

National charity supporting hospice care throughout the UK. Education and job opportunities for nurses.

International Children's Palliative Care Network ICPCN

http://www.icpcn.org/
A collaborative partnership between the Association for Children with Life Threatening or Terminal Conditions and their families (ACT), Help the Hospices and Children's Hospices UK. Contains an international directory of children's palliative care and hospice services.

Spinal Muscular Atrophy Support UK

http://www.smasupportuk.org.uk
A charity offering support, information and contact with other families.

Make-A-Wish UK

Make-A-Wish as a very simple objective - to grant magical wishes to children and young people fighting life-threatening illnesses.

MuchLoved
http://www.muchloved.com

Muchloved hosts memorial websites on behalf of 12,000 families.

Muscular Dystrophy Campaign
http://www.musculardystrophyuk.org/

A national charity offering support and advice through family care officers based in neuromuscular centres throughout the UK.

National Council for Palliative Care
http://www.ncpc.org.uk/

The umbrella organisation for all those who are involved in providing, commissioning and using palliative care and hospice services in England, Wales & Northern Ireland.

National Institute for Health and Clinical Excellence (NICE)

https://www.nice.org.uk/
NICE is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health.

National Niemann-Pick Disease Foundation

http://www.nnpdf.org/
A charity supporting families of children with all forms of Niemann-Pick Disease.

Rett UK

http://www.rettuk.org/
A charity offering telephone support seven days a week. Has diagnostic, therapy and management clinics for all families.

Sibs UK

https://www.sibs.org.uk/
For people who grow up with a brother or sister with a disability or chronic illness.

Social Policy Research Unit
http://www.york.ac.uk/inst/spru/aboutspru.html

Research in key areas of social policy (including health and social care), social security and employment.

Together for Short Lives

Together for Short Lives Together for Short Lives is a UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them.

Winston's Wish
http://www.winstonswish.org.uk/

A charity helping bereaved children and young.

Weblink: RCN Competencies: Palliative Care for Children and Young People https://www2.rcn.org.uk/__data/assets/pdf_file/0012/488991/004_328.pdf

Competencies in children’s palliative care.

Weblink: European Association for Palliative Care: Core Competencies for Education in Childrens Palliative Care

Competencies in children’s palliative care.

Chapter 35: Care of children and young people at the end of life

Weblink: Make a Wish

Click on link above for Make a Wish and consider what voluntary organisations such as this can contribute to care of this dying child and their family

Weblink: Child Bereavement UK

http://www.childbereavementuk.org/support/families/family-stories/

A charity that supports families living through the loss of a child and offers training for professionals caring for them. On the website you will find a range of resources – identify one that could be useful in your practice. The second link presents some family stories. Read a few of these involving different ages of children (ie a still born story, an infant, a child, young person). Identify any commonalities apparent in the grief reactions of the parents

 Weblink: Prompt sheets

These Prompt Sheets devised by Together for Short Lives are invaluable resources for those caring for children at the end of life and their families

Weblink: Rainbows Children’s Hospice

This resource provides in depth information on symptom management of children at the end of life. It is used by practitioners in practice who need to review management of a symptom.

Weblink: Royal College of Nursing (RCN) (2011) Spiritual Needs in Nursing: a pocket guide. London: RCN.

This resource has been produced to aid nurses in ensuring spiritual needs of patients are being met. This usefully highlights that spirituality is not purely religion but encourages the nurse to think wider.

Weblink: Jessie’s Fund
Jessie’s Fund – music therapy.

Weblink: Winston’s wish
A UK charity providing resources and support for bereaved children and young people.

Chapter 36: Care of children and young people with learning disabilities

Weblink: Charities and family groups

MENCAP

National Autism Society

Down’s Syndrome

Weblink: Rett Syndrome

Rett UK is the only UK charity which provides professional support to people living with Rett syndrome across the UK.

http://www.rettsyndrome.org.uk/

Gathers the latest information on Rett Syndrome.

Weblink: Mucopoly Saccharide Disorders

The Society for Mucopolysaccharide Diseases (MPS Society) gives information and professional support to individuals and families affected by MPS and related Lysosomal Storage Diseases throughout the UK.

Weblink: Special Educational Needs (SEN)

Children having a Special Educational Need (SEN) associated with ‘moderate learning difficulty’, ‘severe learning difficulty’ or ‘profound multiple learning difficulty’. UK.GOV (2016)

Weblink: Learning Disabilities Definition in Public Health England (2016) report

Reports the most recent data available at the time of writing (typically for 2014/15) for people with learning disabilities in England.

Weblink: Ketogenic diet

Read more about the ketogenic diet.

Weblink: Augmentative Communication Systems

https://www.makaton.org/

https://www.nationalautismresources.com/the-picture-exchange-communication-system-pecs/

Makaton and Picture Exchange Communication Systems (PECS) are widely used as augmentative communication systems to assist children in finding their voice.

http://www.communicationmatters.org.uk/page/vocas

Technological advances in Voice Output Communication Aids (VOCA)  provide wonderful opportunities for even the most severely disabled children to express their needs and interact.

Weblink: Healthcare Quality Improvement Partnership (HQIP)

Learning Disabilities Mortality Review (LeDeR) Programme, commissioning by the Healthcare Quality Improvement Partnership (HQIP).

Weblink: Books beyond Words

Books beyond Words have a range of health related picture only materials including a selection for children with learning disabilities.

Weblink: The Code

The Nursing and Midwifery Council provide guidance for students and registrants via The Code.

Weblink: NSPCC

Miller, D. and Brown, D. (2014) We have the right to be safe Protecting disabled children from abuse Executive Summary NSPCC.

Weblink: NHS Choices: Down’s Syndrome 

NHS Choices (2015) Downs syndrome.

Chapter 37: Care of children and young people with mental health issues

Weblink: National Service Framework

A National Service Framework for Children, Young People and Maternity Services (2004)is a 10 year programme intended to stimulate long-term sustained improvement in children’s health to ensure fair, high quality integrated health and social care from pregnancy through to adulthood

Weblink: Five Year Forward View for Mental Health

The Five Year Forward View For Mental Health (2016) A report from the Independant Taskforce to the NHS in England

Weblink: Self-harm prevention

http://www.confab.org.uk/out-of-harm

Two apps for suicide and self-harm prevention.

Weblink: Autism

A young autistic campaigners asks: ‘what’s normal anyway?’

Weblink: NICE, Autism Spectrum Disorder in under 19s: Recognition, Referral and Diagnosis. Clinical guideline [CG128]

This document is useful for assessment of autism spectrum disorders.

Weblink: NICE, Autism Spectrum Disorder in under 19s: Support and Management. Clinical guideline [CG170]

Place2Be and NAHT, Children’s Mental Health Matters: Provision of Primary School Counselling

Weblink: Department of Health, Future in Mind: Promoting, Protecting and Improving Our Children and Young People’s Mental Health and Wellbeing.

The report outlines a five-year vision for good mental health, recognising that everyone who works with children has a role in helping them to get the help they need.

Weblink: United Nation Convention on the Rights of the Child

Read this excellent 2017 research collaboration between Queen’s University Belfast and UNICEF on the topic of Child Rights.

Weblink: Children of Offenders

Children of Offenders often need significant support. ’Supporting children and families affected by a family member's offending - A Practitioner's Guide’ can be accessed via this weblink.

Weblink: Mental health charities

Samaritans

Papyrus 

Mental Elf

YoungMinds

MindEd

Special Needs Jungle

Chapter 38: Leadership and management in children and young people’s nursing

Weblink: Leadership and leadership development in healthcare

The Leadership and Leadership Development in Health Care: The Evidence Base (West et al 2015) presents a review of leadership theory and research in general and as associated with health care. It describes a number of common leadership theories and examines the links between effective leadership and the development of positive cultures for the provision of quality health care.

Weblink: Leading Change, Adding Value (LCAV)

Leading Change, Adding Value (NHS England 2016) encompasses the  assumptions of collective leadership for the transformation  change  based on the 3 quality objectives set out under the 5 year forward view  (NHS England 2014)

Weblink: Leadership model

Healthcare Leadership model at the Leadership Academy.

Weblink: Interactive self-assessment tool

Healthcare Leadership Model interactive self-assessment toolYou will need to register for a free NHS Leadership Academy ID.

Weblink: Quality and Improvement

A range of online presentations from The Kings Fund sixth Leadership and Management Summit on creating cultures for quality and improvement in patient care.

Weblink: The Kings Fund

The Kings Fund is an independent charity working to improve health and care in England. Offers a wide range of resources and publications related to leadership and quality improvement.

Weblink: The Health Foundation

The Health Foundation is an independent charity committed to bringing about better health and health care for people in the UK. It offers a wide range of resources and publications related to leadership and quality improvement.

Weblink: NHS Leadership Academy

The NHS Leadership academy offers a range of tools, models, programmes and expertise to support individuals, organisations and local academies to develop leaders.

Chapter 39: Lifelong learning and continuing professional development for the children and young people’s nurse

Weblink: Five Year Forward View

NHS Five Year Forward View.

Weblink: @WeCYPnurses Twitter

@WeCYPnurses twitter feed.

Weblink: Social Networking Guidance (NMC)

NMC social networking guidance.

Weblink: The King’s Fund, Addicott R., Maguire D., Honeyman M., Jabbal J., (2015) Workforce Planning in the NHS.

This is a very readable outline of NHS policy and plans.

Weblink: We Communities

This is an exciting online resource which allows you to contribute to the Children and Young People’s nurses community. It has blogs and discussion which you are encouraged to participate in or you can ask questions and be offered support from your peers in this speciality of nursing.

Weblink: Nursing Times

 This is a valuable resource for the nursing profession and reports breaking news developments for nurses. They are also keen for nurses to write for them and there is guidance if you want to contribute to the journal.   

Weblink: RCN - Children and Young People Professional Issues Forum

One of the many forums that the RCN run we need to influence developments in children and young people’s nursing so get involved with the Children and Young People Professional Issues Forum.

Weblink: A Guide to the Participation of Children and Young People in Health Services

This resource provides key information to ensure the safe, meaningful and ethical participation of children and young people within the delivery of health services and practically demonstrates how we, as child health service providers, can contribute towards creating a culture of participation within child health services. 

Chapter 40: Decision-making and accountabilty in children and young people’s nursing

Weblink: The Kings Fund - Make Shared Decision Making a Reality, No Decision About Me, Without Me

The Government wants shared decision making to become the norm in the NHS, this report by the King’s Fund clarifies the concept and outlines the actions needed.

Coulter, A. and Collins, A. (2011) Make Shared Decision Making a Reality, No Decision About Me, Without Me.  London:  The King’s Fund.

Chapter 41: Being politically aware and professionally proactive in children and young people’s nursing

Weblink: Girls Not Brides

Girls not Brides: 700 civil society organisations committed to ending child marriage and enabling girls to fulfil their potential.

Weblink: Plan-UK: Because I am a Girl

The ‘Because I am a Girl’ campaign focuses on giving girls an equal opportunity to boys, and tackle the real issues girls and adolescent women face, every day.