ANNEXE 1.

PAEDIATRIC MEDICINE- SPECIALISED GENERIC CHILDREN’S SERVICES SPECIFICATION INSERT

Aims and objectives of generic specification
This is an appendix to all the individual specialised services specifications.
Vision for children with specialist health needs
All children and young people are able to lead lives as free from their illness as possible.
Children, young people and families feel that care is personalised to their needs, organised around them, and they are active participants in their care
The illness is diagnosed early, accurately and comprehensively, using age-appropriate tools and strategies Children and young people are supported by their families, early years settings and schools, as well as health
Self- manage their illness, to receive regular structured review and to have rapid access to appropriate services when control deteriorates
Acute deterioration in their health are treated promptly and appropriately and the child/ young person is supported to avoid future acute episodes where possible
Premature deaths in children and young people are prevented Variations in the quality of care across the country are explored, addressed and minimised.
This specification applies to all children’s services and outlines generic standards and outcomes that would be fundamental to all services. The majority of specialist services are provided in tertiary or quartenary care centres but some aspects may occur in secondary or even primary care.
1. Population Needs
Descriptions of populations by specific services are included in individual service specifications.
Population covered
This generic specification applies to all children receiving specialised services in England, up to their 19th birthday. Individual services may transition children to adult servicesbefore their 19th birthday.Although it may be useful to set a target age, there is no ‘right’ time for transition. A flexible approach is called for that takes developmental readiness into account and links to other social transitions such as leaving school” (National Service Framework for children, young people and maternity services ( 2003,2004)
(see individual specifications for detail of transition to adult services and the NHS England Specialised Service Transition service specification) Is this needed or do we refer to the appendix on transition?
The specification applies to all services described in NHS England manual ( for paediatric services and includes any “all ages” sections within other specialised services specification where this is relevant to children.
1.1 National/local context and evidence base
  • The Children’s Outcome forum report is a key document that takes a life course approach from pre-conception to transition to adult care. It includes a number of key recommendations to improve children and Young People’s health outcomes.
  • The National Service Framework for Children, Young People and Maternity Services Sets national standards for the first time for children’s health and social care which promote high quality, women and child-centred services and personalised care that meets the needs of parents, children and their families.
  • Evidence is increasing that implementation of the national Quality Criteria for Young People Friendly Services “You’re Welcome” (Department of Health, London 2011) have the potential to greatly improve patient experience, leading to better health outcomes for young people and increasing socially responsible life-long use of the NHS. Implementation is also expected to contribute to improvements in health inequalities and public health outcomes e.g. reduced teenage pregnancy and STIs, and increased smoking cessation. All providers delivering services to young people should be implementing the good practice guidance which delivers compliance with the quality criteria.
  • TheNHSConstitution
  • Bringing Networks to life RCPCH
  • Transforming community services – For Children, Young People and their families
  • UN convention “Rights of the child”
  • Facing the Future: Standards for Paediatric services RCPCH
  • Academy of Royal colleges/7 day working

  • National pledge to improve children’s health and improve child deaths
  • Children and Young People Atlas of Variation
  • Principles for commissioning and Delivering better health outcomes and experiences for Children and Young People (East of England)
  • Involving Children and Young People in Health services, RCPCH, NHS Confederation, OPM (And Not Just a Phase)
  • Our children deserve better
Generic Principles
Information and communication
Children, young people and their families feel listened to and have meaningful information provided to them in a format that empowers them to make informed choices.
Health information is provided in a format that is easy for them to understand and is age appropriate.
Patient information is shared with informed consent between health, social care and education.
Information systems and technologies are in place to facilitate the easy and secure sharing of information and communication.
Good quality information is collected and used to inform service planning
Supporting self- care
Children, young people and their families are appropriately educated and enabled to manage their own illness as far as possible
Patient Participation and engagement
Children, Young People and their families will be at the heart of decision-making, with the health outcomes that matter most to them taking priority. (The Outcomes Framework, NHS Mandate and Business plan.)
Children, Young People and their families are asked for their feedback and services include a measure of patient experience and evidence this feedback has made a difference. (You said.. we did…)
Children, Young people and their families have the opportunity to shape service change and improvement.
(Also Friends and family test for CYP – 2015)
Evidence based and sustainable
Services are commissioned and delivered according to national or locally agreed best practise guidelines and standards
Planning and development of services takes into account number of staff required to treat number of patients
Healthcare is delivered to the same standard 24/7
Staff are able to access, understand and act on service activity and outcomes
Access to care
The standards outlined in “Facing the Future” should be adhered to including the standard Specialist Paediatricians are available for immediate advice for acute problems for all specialities and all paediatricians.
Workforce planning and safe and sustainable
All staff caring for children and young people are appropriately trained to look after children and Young people and have appropriate communication skills. They have on-going continual professional development.
Children’s Community services are vital to deliver care closer to home. Teams need to be of an appropriate size to allow specialist and generic support in the community and allow an extended hours service.
There should be appropriate planning and training to deliver an appropriate children’s workforce and this will change as new innovative roles are developed.
Prevention and early intervention
Professionals take every opportunity to “Make every contact count” to advise and sign-post children, young people and their families to enable them to improve their health and well-being outcomes. E.g smoking cessation, pregnancy, social support, immunisations.
?Also need something about screening and support services
Governance and variation of care
Good quality information is collected and used to inform service planning.
Staff are able to access and act on information on service activity and outcomes. There is evidence that minimum data sets are collected and incidents are reported and acted on.
Services should bench mark themselves against each other and variations in care should be explored and understood. Good practise should be shared and unnecessary variation reduced.
There should include mechanisms to act on incidents across pathways of care and evidence of audit and re-audits preferably across pathways.
Transformation and Innovation
There is evidence of critical review of current services, considering reconfiguration, integration and networked care
Commissioners ensure providers have critically appraised and adapted service delivery models to transform care across the health care system
Innovation in service delivery and new technologies is encouraged and implementation supported
Role of primary care
Although much of the care for children with specialist conditions occurs in specialist centres primary care often play an important role in supporting the whole family. The consequences of having a child with a long term or serious condition can be profound for the parents and siblings. Primary care also have a responsibility for developmental checks and immunisations. Parents also sometimes use them as a first port of call. When a Young Person is transitioned to adulthood some conditions may be looked after in primary care or a GP may be requested to help with the palliative care of a patient. They often prescribe many of the medications. It is important therefore that the GP is kept fully informed and they are given appropriate information about the child or young person’s illness and clear guidelines to the expectations from you.
Children with long term conditions should have a named GP.
Poorly planned transition from young people’s to adult-oriented health services can be associated with increased risk of non adherence to treatment and loss to follow-up, which can have serious consequences. There are measurable adverse consequences in terms of morbidity and mortality as well as in social and educational outcomes. When children and young people who use paediatric services are moving to access adult services (for example, during transition for those with long term conditions. Please refer to paediatric transition service specification insert.)
Communication
All children and young people who use services must be:
•Fully informed of their care, treatment and support
•Able to take part in decision making to the fullest extent that is possible.
Asked if they agree for their parents or guardians to be involved in decisions they need to make.
Age appropriate services
All those involved in the care, treatment and support cooperate with the planning and provision to ensure that the services provided continue to be appropriate to the age and needs of the person who uses services. Consideration should be made to Young People.
Research
Paediatric clinical and academic researchers provide NHS patients with access to the latest new diagnostic tests and treatments (required by the NHS Constitution (2009)) and seek to ensure that patients from every part of England are made aware of research that is of particular relevance to them (Prof Dame Sally Davies’ CMO statement in National Institute of Health Research Annual Report 2010/11)
Outcomes
NHS Outcomes Framework Domains & Indicators
Domain 1 / Preventing people from dying prematurely / √
Domain 2 / Enhancing quality of life for people with long-term conditions / √
Domain 3 / Helping people to recover from episodes of ill-health or following injury / √
Domain 4 / Ensuring people have a positive experience of care / √
Domain 5 / Treating and caring for people in safe environment and protecting them from avoidable harm / √
For children and young people the NHSwill work with other agencies to promote health and wellbeing in a joined-up approach, to give them the best start in life.
Since 2010, the DH has published three outcomes frameworks, one for each part of the health and care system. The outcomes framework for public health, adult social care and the NHS include the outcomes for health and care that matter most to all of us, including children, young people and their parents. As one of the primary mechanisms by which the health and care system is held to account, they will act as a focus for action and improvement.
Outcomes.
The National Minimum Standards for Providers of Independent Healthcare, (Department of Health, London 2002) require the following minimum standards for children, these can be improved upon within individual Providers:
  1. A16.1 Children and Young People are seen in a separate out-patient area, or where the hospital does not have a separate outpatient area for children, they are seen promptly.
  2. A16.3 Toys and/or books suitable to the child’s age are provided.
  3. A16.8. There are segregated areas for the reception of children and young people into theatre and for recovery, to screen the children and adolescents from adult patients; the segregated areas contain all necessary equipment for the care of children.
  4. A16.9 A parent is to be actively encouraged to stay at all times, with accommodation made available for the adult in the child’s room or close by.
  5. A16.10 The child or Young Person’s family is allowed to visit him/her at any time of the day, except where safeguarding procedures do not allow this
  6. A16.13 When a child is in hospital for more than five days, play is managed and supervised by a qualified Hospital Play Specialist.
  7. A16.14 Children and young people are required to receive education when in hospital for more than five days; the Local Education Authority has an obligation to meet this need and is contacted if necessary.
  8. A18.10 There are written procedures for the assessment of pain in children and young people and the provision of appropriate control.
All hospital settings should meet the standards for Children and Young People in emergency settings
All hospital settings should meet the Standards for the Care of Critically Ill Children (Paediatric Intensive Care Society, London 2010).
There should be age specific arrangements for meeting Regulation 14 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2010. These require:
  1. A choice of suitable and nutritious food and hydration, in sufficient quantities to meet service users’ needs;
  2. Food and hydration that meet any reasonable requirements arising from a service user’s religious or cultural background
  3. Support, where necessary, for the purposes of enabling service users to eat and drink sufficient amounts for their needs.
  4. For the purposes of this regulation, “food and hydration” includes, where applicable, parenteral nutrition and the administration of dietary supplements where prescribed.
  5. Providers must have access to facilities for infant feeding, including facilities to support breastfeeding (Outcome 5E, of the Essential Standards of Quality and Safety, Care Quality Commission, London 2010)
  6. All paediatric patients should have access to appropriately trained paediatric trained dieticians, physiotherapists, occupational therapists, speech and language therapy, psychology, social work, pharmacy and CAMHS services within nationally defined access standards. (see relevant service specification for detail).
  7. All children and young people should have access to a professional who can undertake an assessment using the Common Assessment Framework and access support from social care, housing, education and other agencies as appropriate
All registered providers must ensure safe use and management of medicines, by means of the making of appropriate arrangements for the obtaining, recording, handling, using, safe keeping, dispensing, safe administration and disposal of medicines (Outcome 9 Essential Standards of Quality and Safety, Care Quality Commission, London 2010). For children, these should include specific arrangements that:
  1. Ensures the medicines given are appropriate and person-centred by taking account of their age, weight, formulation or delivery device references/capabilities and any disabilities/impairments and cultural issues they may have. Licensed medicines should be used when ever available and clinically acceptable.
  1. Ensures that staff prescribing, dispensing and issuing medicines have the competency and skills needed for children and young people's medicines management and have the appropriate paediatric dosing reference resources to use.
  1. Ensures that understandable written information is available for parents and carers and wherever possible, age specific information is available for the children, about the medicines they are taking, including the risks and ways to report adverse events. Information should be informative, covering topics such as the increased length of time it may take to acquire specialist or orphan medicines.
  1. Ensures that all drug related problems are recorded and acted upon; including demonstration of continued learning and improved medicines provision.
Many children or Young people with long term illnesses have a learning or physical disability. Providers should ensure that:
  1. They are supported to have a health action plan
  2. Facilities meet the appropriate requirements of the Disability Discrimination Act 1995
  3. They meet the standards set out in Transition: getting it right for young people. Improving the transition of young people with long-term conditions from children's to adult health services. Department of Health Publications, 2006, London and the national NHS England transition service specification.
  4. Children with life-limiting/threatening long term conditions to have a comprehensive annual review which is appropriate to condition.
Research outcomes will be disseminated via local, regional and national Institute of Health reporting pathways.
Key principles for children
The Care of Children in Hospital (HSC 1998/238) requires that:
  • Children are admitted to hospital only if the care they require cannot be as well provided at home, in a day clinic or on a day basis in hospital.
  • Children requiring admission to hospital are provided with a high standard of medical, nursing and therapeutic care to facilitate speedy recovery and minimize complications and mortality.
  • Families with children have easy access to hospital facilities for children without needing to travel significantly further than to other similar amenities.
  • Children are discharged from hospital as soon as socially and clinically appropriate and full support provided for subsequent home or day care.
  • Good child health care is shared with parents/carers and they are closely involved in the care of their children at all times unless, exceptionally, this is not in the best interest of the child; Accommodation is provided for them to remain with their children overnight if they so wish.
Research