HEALTH SERVICE EXECUTIVE Review of current policy and practice in the provision of home care to children with complex medical conditions December 2014
Contents Page Executive Summary 3-5 Introduction 6 Research 7 Developing Services in Northern (2009) 7 Transitions of Care and Care Co-Ordination (USA 2008) 7 Hospital Discharge Process (USA 2007) 8-11 Admission and Discharge Guidelines (Health Boards Executive 2003) 12 Code of Practice for Integrated Discharge Planning (HSE 2008) 13 Guideline for Nurse/Midwife Facilitated Discharge Planning (HSE 2009) 13 Integrated Care Guidance (HSE 2014) 13 You and Your Health Service (HSE 2010) 14 National Standard for Patient Discharge Summary Information (HIQA 2013) 14 Safe Practice on Hospital Discharge (USA 2006) 14 National Framework for Children and Young Peoples Care (UK 2010) 15-19 Service Provision for Children and Young People with Complex Needs Scotland 2009) 20-21 Palliative Care for Children with Life Limiting Conditions in Ireland, DoH&C 2010) 21 Discharge of Children with Complex Needs/Tracheotomy Dublin South West, Kildare West Wicklow (HSE 2009, 2013) 22-24 Clinical Governance Personal, Teams and Organisational Responsibilities 24-26 Data Collection Snapshot Survey - Numbers currently receiving home care/packages 26-30 Number by Area and Age Profile 27 Range of Medical Conditions 28 Other Conditions 29 Expenditure 29 Service Providers 30 Conclusion 31 Recommendations 31-35 Appendices (1) Draft Report on the Development of Standardised Pathways For Children who had a Tracheotomy (2) Draft Report of Working Group on Discharge of infants/children with Complex needs from Crumlin and Temple Street Children s Hospitals to Dublin South West/Kildare West Wicklow (3) Report by Our Lady s Children s Hospital and Temple Street Children s University Hospital, 2014 - Framework for the Management of Children with Complex Care Needs in the Community including the Hospital Discharge Process. (Focusing on Children with tracheostomy and on Long Term Ventilation) 2
Executive Summary Children with complex needs being cared for in their own homes are a small but increasing proportion of those receiving community services. Diagnoses common to children with special health care needs are numerous and include preterm birth, congenital genetic and metabolic disorders, neurological disorders, sequelae of severe infections, or trauma and malignancies. These can include one or more chronic conditions, functional limitations often associated with technology assistance, and health care use. Technology dependency refers to the use of medical devices without which if they were to fail or be discontinued adverse health consequences and hospitalization would likely follow. Examples include mechanical ventilators, intravenous catheters, tracheostomy tubes, enteral feeding devices, colostomy bags, and urinary catheters. Expectations have increased regarding the extent of care that can be provided in the home and services responses in the context of planning, development and delivery models have not kept pace with demands. A mapping exercise completed by the HSE in June 2014 identified in excess of 300 children and young people receiving care in the home for a range of conditions across the spectrum from complex to life limiting/life threatening conditions. Notwithstanding that there were some definitional, interpretative and consistency issues with Areas including or excluding conditions, for example conditions where palliative care services were being provided, the overall general substantive issue can be established. Currently, non-acute services to the value of approximately 15.00m annually are provided by the Health Service Executive (HSE) either directly, by or together with voluntary providers, by or together with private providers, or arranged by families/carers with funding provided by the HSE and/or by not-for-profit organisations. Recent studies by the HSE indicate the need for: The development and implementation of national policy and standard service development and service delivery frameworks for this client group The provision of clarification regarding general and clinical governance in respect of the responsibilities and accountabilities of all service providers to this client group Strengthening the discharge/transition processes between acute and community settings Provision of a standard needs assessment tool that incorporates risk assessment Standard approach to care planning and the development of the individualised care plan Provision of training and continuous development of staff Inclusion of a performance management process including clinical audit The reliance on agency staff has been highlighted as a significant risk factor as has the continuous unavailability of staff with the necessary qualifications, skills and experience to care for this client group in the community. Due to the range of providers involved in the provision of services, managers have identified the need for clarification regarding clinical governance and the need for a standard procurement process to be developed in response to a standard service specification framework. This report recommends a number of actions which if implemented in the immediate term and the medium term would address the concerns raised by stakeholders: 3
The establishment of a cross-divisional Oversight Group Area Managers to establish a specific governance group for this client group in each region/area Area Managers to assign a named clinical professional to be the local lead person and manager regarding the management of care to this client group The local lead person will be the case manager/coordinator and will be key a participant in the development and implementation of standard business processes Arrange a business meeting with immediate effect with the relevant stakeholders in the Acute Hospitals Division, Social Care Division, Primary Care Division including the national lead for general practitioners, Quality and Patient Safety, and the national clinical programme for paediatrics and neonatology with a view to concluding the necessary operating protocols for discharge planning, assessment of need, risk assessment of home care, actual discharge, and clinical governance Strengthen the discharge planning process and the actual discharge process by developing interim formal standard protocols between the acute paediatric hospitals and the regional hospitals; between the acute paediatric hospitals and community services; between the regional hospitals and community services. A fundamental prerequisite of the discharge process must be early engagement between case managers/ coordinators, hospital discharge planners and managers and receiving clinicians in the community. Ensure that there are arrangements for the expedited transmission of the discharge summary to the general practitioner and other clinicians accepting responsibility for the patients care after discharge from the acute paediatric hospital or regional hospital to the patients home. A review to be undertaken with immediate effect of all existing home care packages for this client group. The review to be completed using a standard assessment tool incorporating the needs of the child, the needs of the parent(s)/family/guardian(s), and the factors to be assessed (for example the Bradford Tool as modified for children (appendix 4) or the UK Department Health Assessment Tool and Decision Support Tool (appendix 5) ). Also, the review should be undertaken with reference to the HIQA National Standards for Safer Better Healthcare, 2012, as the benchmark, e.g. : o Person-centred care and support o Effective care and support o Safe care and support o Better health and wellbeing o Governance o Workforce o ICT & use of information Every home care package to be risk assessed and a risk management plan to be developed and implemented Establish an effective process for engaging with the child and family/carer The existing Service Agreements and Contracts with not-for-profit and for-profit providers to be reviewed with the providers and amended where necessary to address services needs and any clinical governance issues Clinical and general governance responsibilities to be restated and reissued to all internal and external service providers and managers in acute and non-acute settings - providers in the statutory, voluntary, not-for-profit, and for- profit settings 4
Community case managers/ coordinators and the hospital discharge managers to receive joint training regarding roles and responsibilities The provision of a single IT based solution to support the overall management of services for this client group, e.g. patient details, the discharge details to the receiving clinicians, care plan including reviews and updates, etc, all elements of the care package, duration of the package and individual elements of the package, duration of the package, care providers, risk assessment, risk management, cost of the package, standard coding system throughout the HSE, commentaries, etc. Implementation of the recommendations in this report requires input across the Divisional structures. The development and review of standard guidelines and protocols will require a national approach while implementation will be the responsibility of service managers at operational level in the acute and non-acute sectors. Monitoring the implementation and efficacy of the recommendations will be included as part of the overall accountability framework in the context of access to services, the quality and safety of those services, providing those services within the financial resources available and the effective use of the overall workforces in the provision of services. Expectations have increased regarding the extent of care that can be provided in the home but services responses have not kept pace with demands. Strategically, the planning, development and delivery of services to adequately meet the needs of this cohort of service users will be comprehended by developments in the National Clinical Programmes and the new structural developments. The recommendations in this report are designed to address the immediate issues but also to put in place a process to ensure that the medium and longer term issues are addressed. Pat Dunne Head of Operations Primary Care Division 5
Introduction Enormous advances in neonatal, paediatric, and surgical care have led to the survival of a greater number of children and with special health care needs who are cared for at home. The issues faced by these children and their families are often complex and include significant feeding and respiratory problems, often associated with technology dependencies. Many children with special health care needs have intellectual disabilities, physical impairments, and sensory deficits that require specialised therapeutic and educational interventions. The overarching goal of home health care is to optimise each child s health and function while minimising recurrent or prolonged hospitalizations through the provision of comprehensive, cost-effective, familycentred health care rendered in a nurturing home environment. Caring for children with chronic conditions at home can be challenging to providers of children s healthcare but successful and rewarding when provided in the context of a coordinated, family-centred complete medical home. (Elias ER, et al, Journal of the American Academy of Paediatrics, 2012). Children with special health care needs are defined as those who have or are at increased risk of having a chronic physical, developmental, behavioural, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally (Mc Pherson M, et al, Paediatrics, 1998). More than 10 million children in the United States meet this definition. Diagnoses common to children with special health care needs are numerous and include preterm birth, congenital genetic and metabolic disorders, neurological disorders, sequelae of severe infections, or trauma and malignancies (Kogan MD, et al, Paediatrics, 2009). A subset of children with special health care needs has been recently termed children with medical complexity, as defined by substantial health care needs, one or more chronic conditions, functional limitations often associated with technology assistance, and health care use. Technology dependency refers to the use of medical devices without which if they were to fail or be discontinued adverse health consequences and hospitalisation would likely follow. Examples include mechanical ventilators, intravenous catheters, tracheostomy tubes, enteral feeding devices, colostomy bags, and urinary catheters. The multifaceted medical, developmental, and psychosocial needs of children with such a diverse group of diagnoses typically require the expertise of many paediatric subspecialists and related health care providers in a coordinated system of care. Most children and youth with medical complexity are discharged to home after birth or hospital admissions for acute exacerbations of conditions because long-term hospitalisation of such children is no longer a preferred option in our society. As the clinical acuity of hospitalised children has increased over time, so too has the severity and complexity of the unresolved medical conditions present on discharge. Children are now frequently sent home to complete or continue interventions that formerly would have occurred in hospitals. They are discharged with complex medical interventions, including oxygen, tracheostomies with or without ventilators, enteral feeding tubes, intravenous infusions, dialysis, and complex medication regimens (Elias Roy Ellen et al, American Academy of Paediatrics, 2012). 6
Developing Services to Children and Young People with Complex Physical Healthcare Needs, DoH, Social Services and Public Safety, Northern Ireland, 2009 The Department of Health, Social Services and Public Safety, Northern Ireland used a needs-led definition to define children and young people with complex needs as: children (and young people) with complex physical healthcare needs are those who require a range of additional support services beyond the type and amount required by children generally and those usually provided to children with impairments and long term illnesses (Developing Services to Children and Young People with Complex Physical Healthcare Needs, 2009). They adopted this definition rather than one based on specific medical conditions, such as those leading to technologically developed interventions, or those who have a life limiting or life threatening condition, or acquired brain injury resulting in significant impairment and/or children with multiple impairments from birth. Wong, writing in the Journal of Paediatric Oncology Nursing 1991, noted that: home care has become a well-accepted option for children with illness including chronic illnesses where continued technological care is required. Improvements in health technologies and pharmacy, which include ventilation equipment, nutritional support equipment and infusion therapies have encouraged and enabled home health care as a safe and cost-effective alternative to institutional care. Components of successful home care include assessment of the child and family for this option, assessment of the service providers ability to provide the services the child and family needs, development of a comprehensive care plan, education of care givers and care providers, and ongoing evaluation of the plan. She went on to state that nurses play a major role in the discharge planning for home care by educating care givers to perform the necessary care, by providing opportunities for care givers to demonstrate competence before assuming total responsibility, and by ensuring that the care givers and the home environment are ready for the child s discharge. Throughout this process, the principles of normalisation are applied to provide the child with an optimum home environment. Establishing parent-professional partnerships is crucial to providing family support that empowers family members, especially parents, to assume the responsibilities of caring for their child. Transitions of Care and Care Co-Ordination (USA 2008) In their report, Improving Transitions of Care 2008, the National Transitions of Care Coalition (USA) referred to the importance of and difference between transitions of care and care coordination. Transitions of care refers to the actual transition between two particular care settings which often involves multiple persons including the patient, family or other care giver(s), nurse(s), social worker(s), case managers(s), pharmacist(s), physician(s), and other providers. In this scenario the term transitions of care generally refers to the patient moving from an acute setting to care in the home where an optimal transition is well planned. Poor transitions of care can compromise patient safety and quality of care. Care co-ordination is essential for safe care and includes developing and guiding diagnostic and therapeutic plans with integration of input from the medical team, patients, and families toward the goal of discharging a child back to his or her home. 7
Care coordination involves the interaction of service and care providers across a range of disciplines and in different settings and it typically encompasses the assessment of a patient s needs, development and implementation of a care plan, and monitoring and evaluation of the care plan. The Institute of Medicine in the USA has emphasised that health care quality suffers due not to a lack of effective treatments but to inadequate health care delivery systems that fail to implement theses treatments (Transforming Health Care Quality (2003)). Fragmented care and inefficiencies can unnecessarily lead to sub-optimal outcomes for patients, care givers and service providers. Also, unnecessary hospital stays can occur when transitions are flawed. Hospital Discharge Process Preparation for discharge needs to begin at admission and engage the family at all stages. The American Medical Association s Council on Scientific Affairs published an evidenced-based review in 1996 (Evidence-based principles of discharge and discharge criteria) of the discharge process and, from this analysis, identified principles that should be incorporated in the discharge process. These include the following: discharge criteria should be based on data regarding physiological, psychological, social, and functional needs ; an interdisciplinary team is necessary for comprehensive planning to meet the patient s needs; early assessment and planning should be organized to ensure that services are prepared at discharge; post discharge medical care should be arranged before discharge; patient and caregiver should be able to demonstrate an understanding about and capacity to perform the care required after discharge; and coordinated timely and effective communication between all health professionals, care givers, and the patient is essential and should be well established before discharge Following a study of the relevant literature, Greenwald, Denham and Jack (The Hospital Discharge: A review of High Risk Care Transition with highlights of Reengineered Discharge Process, Patient Safety Journal (2007), USA, concluded that: the current hospital discharge process is not standardised; post discharge information transfer to the accepting provider is often inconsistent and delayed, and the quality is often inadequate; providing high-quality information to the post discharge accepting provider might lower re-hospitalisation rates; adverse events after discharge are common and up to one third are preventable; tests pending at the time of discharge are often not adequately followed up; the most common post discharge adverse events are medication related; post discharge telephone calls by pharmacists and nurses may decrease post discharge adverse events and hospital use; patients who remember discussions about discharge medications at discharge may have fewer adverse events; providing information at the appropriate literacy level could reduce post discharge hospital use; discharge planning (usually related to post hospital placement) and case managers making post hospital appointments without addressing other components of the 8
discharge do not seem to improve post discharge outcomes and could increase post hospital use and costs; it is important to involve the patient throughout the care transition and empower the patient to participate in his/her care; and there is a paucity of data on well-designed comprehensive hospital discharge programs They went on to use root cause and qualitative analysis to study the systems and processes and then describe the themes and principles (table 1) thought to be important to the discharge process. Using these principles they also developed what they refer to as a reengineered discharge process (RED). They identified eleven (11) discrete and mutually reinforcing components that they believe should consistently be part of every hospital discharge (table 2). Table 1: The Principle Themes of the RED Process 1 There must be explicit delineation of roles and responsibilities 2 Waiting until the discharge decision is made before beginning the discharge process is error prone. 3 Patient education must occur throughout the hospitalisation, not only at the time of discharge. 4 Information must flow reliably from the PCP (primary care physician), to the hospital team, among the hospital team, and back to the PCP. 5 Information to be included in the discharge resume (summary) should be available when it is prepared. The discharge resume must be completed before discharge and updated at the time of discharge. Waiting days or weeks leads to errors. 6 Every discharge must have a written discharge plan that is comprehensive in scope and addresses medications and other therapies, dietary and other lifestyle modifications, follow-up care, patient education and health literacy improvements, and instructions about what to do if their condition changes. 7 Every discharged patient should have a comprehensive discharge plan completed before discharge, and a copy should be provided to the patient at discharge. 8 All patients should have access to his/her discharge information in their language and at their literacy level. 9 Patients at risk for re-hospitalisation should have the discharge plan reinforced after discharge. 10 All information about the admission must be organised and promptly delivered to the PCP. 11 Efficient and safe hospital discharges are significantly more challenging if the case management staffs are available only during limited daytime hours. 12 Discharge processes must be benchmarked, measured, and subject to continuous 9
quality improvement programs. Source: Journal of Patient Safety, USA, June 2007 The twelve principles place emphasis on the importance of the timely sharing of information between clinicians and service providers; patient access to information appropriate to their circumstances and discharge processes benchmarked against standards. Table 2: Components of the Reengineered Hospital Discharge 1 Educate the patient about their diagnoses throughout their hospital stay. 2 Make appointments for clinician follow-up and post discharge testing and Make appointments with input from the patient regarding the best time and date of the appointment. Coordinate appointments with physicians and for testing and other services. Discuss reason for and importance of physician appointments. Confirm that the patient knows where to go and has a plan about how to get to the appointment; review transportation options and other barriers to keeping these appointments 3 Discuss with the patient any tests or studies that have been completed in the hospital and discuss who will be responsible for following up the results. 4 Organize post discharge services Be sure patient understands the importance of such services. Make appointments that the patient can keep. Discuss the details about how to receive each service. 5 Confirm the medication plan Reconcile the discharge medication regimen with those taken before the hospitalisation Explain what medications to take, emphasising any changes in the regimen Review each medication s purpose, how to take each medication correctly, and important side effects to watch out for Be sure that the patient has a realistic plan about how to get the medications. 6 Reconcile the discharge plan with national guidelines and critical pathways 7 Review the appropriate steps on what to do if a problem arises Instruct on a specific plan of how to contact the PCP (or coverage) by providing contact numbers for evenings and weekends Instruct on what constitutes an emergency and what to do in cases of emergency 8 Expedited transmission of the discharge resume (summary) to the physicians (and other services such as the visiting nurses) accepting responsibility for the patients care after discharge that includes the following: 10
reason for hospitalisation with specific principal diagnosis, significant findings [when creating this document, the original source documents (e.g., laboratory, radiology, operative reports, and medication administration records) should be in the transcribers immediate possession and be visible when it is necessary to transcribe information from one document to another], procedures performed and care, treatment, and services provided to the patient, the patient s condition at discharge, a comprehensive and reconciled medication list (including allergies), a list of acute medical issues, tests, and studies for which confirmed results are pending at the time of discharge and require follow-up, and information regarding input from consultative services, including rehabilitation therapy 9 Assess the degree of understanding by asking them to explain in their own words the details of the plan: May require removal of language and literacy barriers by using professional interpreters May require contacting family members who will share in the care giving responsibilities 10 Give the patient a written discharge plan at the time of discharge that contains the following: reason for hospitalisation; discharge medications including what medications to take, how to take them, and how to obtain the medication; instructions on what to do if their condition changes; coordination and planning for follow-up appointments that the patient can keep; and coordination and planning for follow-up of tests and studies for which confirmed results are not available at the time of discharge 11 Telephone reinforcement of the discharge plan and problem solving 2-3 days after discharge. Source: Journal of Patient Safety, USA, June 2007 The key elements of the reengineered process are designed to ensure that the patient is involved at every stage and understands the discharge plan; the discharge plan meets the required standards and the receiving clinician/team is fully briefed and receives the discharge information. While the work undertaken by Greenwald, et al, related to adults, some of the principles and the components of the reengineered hospital discharge can be applied equally to the discharge process for children and young people and their family/carers. Admission and Discharge Guidelines (Health Boards Executive 2003) In 2003 the Health Boards Executive in the Republic of Ireland published Admission and Discharge Guidelines in response to the National Health Strategy, Quality and Fairness (DoH&C 2001). The purpose of the Guidelines was to direct the provision of an effective and efficient 11
level of appropriate patient centred care, through the development of appropriate links between Primary, Secondary, Community and Continuing Care Services. This required a systemwide approach, the key elements of which included: strategic and timely service planning uniformity of structures and processes ( following national guidelines) linked protocols and pathways, shared between primary and secondary care and based on international best practice so that objective measures of performance are readily available The Guidelines identified a number of principles should underpin the development of an effective emergency and elective admissions and discharge planning function. These include: The provision of patient centred services, which are accessible to the population without compromising safety, quality and clinical standards, to the right people in the right location and at the right time Patients should be consulted and included in all decisions about their care Clinical practice and care should be based on the most up to date evidence. Co-operation and clinical networking between hospitals and between care groups are essential to optimise outcomes, particularly where complex care issues are involved A service based on good clinical governance (i.e. founded on continuous quality improvement, staff development, risk management and audit) Acute hospital services should be organised into three parallel streams of care interdependent of each other. This involves a division of acute hospital services into emergency, elective and out patients department/day care The pivotal role of the Primary Care Teams should be emphasised Early induction training of healthcare professionals in relation to the principles set out above. The HBE noted that discharge from hospital is a process and not an isolated event. It involves the development and implementation of a plan to facilitate the transfer of an individual from hospital to an alternative setting. Components of the system, i.e. the family, carers, hospitals, primary care providers, community services and social services, must work together. 12
Code of Practice for Integrated Discharge Planning (HSE 2008) In 2008 the HSE published a Code of Practice for Integrated Discharge Planning for use by all relevant healthcare providers, based on legal requirements and current best practice at that time. The Code espoused a patient centred, whole system approach to integrated discharge planning. Patient centred care was defined as occurring when General Practitioners and other Primary, Community and Continuing Care providers coordinate care for a patient from hospital to the community. Whole system approach occurred when all stakeholders accepted their interdependency and worked together to ensure that there were no gaps in services or duplication of effort. The approach may involve individuals or teams working innovatively to enable joined-up delivery of services that support individual needs and the transition to an appropriate setting. Guideline for Nurse/Midwife Facilitated Discharge Planning (HSE 2009) To support implementation of the HSE Code of Practice for Integrated Discharge Planning 2008, the HSE published a Guideline for Nurse/Midwife Facilitated Discharge planning in 2009. The guideline outlines core elements for nurse/midwife facilitated discharge planning and it was designed to support and formalise existing discharge planning practice while providing a template for local guidelines. The decision to admit/discharge remains the responsibility of the patient s consultant/medical team. Integrated Care Guidance (HSE 2014) In 2014 the HSE published Integrated Care Guidance: A practical guide to discharge and transfer from hospital. This guidance replaced the HSE Integrated Discharge Planning Code of Practice (2008) and was developed from the lessons learned from an evaluation of the 2008 Code. Five key lessons were identified: Services should be organised around the service user. All stakeholders recognise they are interdependent and understand that action in one part of the system has an impact elsewhere Vision, values, objectives and actions (including redesign of services) are all shared. Service users experience services as seamless and the boundaries between service providers are not apparent One size of integrated care does not fit all, it is service user centred. In the 2014 Integrated Care Guidance, nine steps for effective discharge and transfer of care from hospital to the community are articulated: Begin planning for discharge or transfer before or on admission Identify whether the service user has simple or complex needs Develop a treatment plan within 24 hours of admission Work together to provide comprehensive service user assessment and treatment Set an Estimated Length of Stay /Predicted Date of Discharge, (ELOS/PDD) transfer within 24 48 hours of admission Involve service users and carers so they make informed decisions and choices Review the treatment plan on a daily basis with the service user Use a discharge checklist 24 48 hours before discharge 13
Make decisions to discharge/transfer service users each day It should be noted that This document pertains to discharge and transfer from the acute hospital setting to the community and consequently may be followed by service specific guidance e.g. palliative care discharge guidelines, other relevant clinical pathways. Principles of the Healthcare Charter (HSE 2010) You and Your Health Service (HSE 2010), a health service charter, sets out eight principles that are considered fundamental to both health service employees and to people who use the services. The principles are designed to promote care that is compassionate, more predictable, personal to service users, preventative and participatory. The Integrated Care Guidance is underpinned by these eight core principles: Access: Our services are organised to ensure equity of access to public health and social care services. Accountability: We welcome your complaints and feedback about care and services; investigate your complaints and work to address your concerns. Dignity and respect: We treat people with dignity, respect and compassion. We respect diversity of culture, beliefs and values in line with clinical decision making. Safe and effective services: We provide services in a safe environment, delivered by competent, skilled and trusted professionals. Communication and information: We listen carefully and provide clear, comprehensive and understandable health information and advice. Participation: We involve people and their families and carers in shared decision making about their healthcare. Privacy: We ensure adequate personal space to ensure privacy in providing care and personal social services. We maintain strict confidentiality of personal information. Improving health: Our services promote health, prevent disease and support and empower those with chronic illness to self care. It is noted that: Service users who have complex discharge or transfer of care needs will need a creative and flexible person centred care approach from all service providers. Staff will need support and information about the range of available resources in order to develop person centred, appropriate solutions to discharges and transfers of care. National Standard for Patient Discharge Summary Information (HIQA 2013) In 2013 the Health Information and Quality Authority published the National Standard for Patient Discharge Summary Information. They noted that safe, reliable healthcare depends on access to, and use of, information that is accurate, valid, reliable, timely, relevant, legible and complete. Modern clinical practice seeks to reduce a patient s time in an acute hospital to a minimum. In order to ensure continuity of care during the transition from secondary or tertiary care to primary care, effective communication between practitioners is required and the standard patient discharge summary is an important step towards improving the whole care pathway and enabling the delivery of safe, person-centred care (HIQA, 3 RD July 2013). NQF Safe Practice on the Hospital Discharge (USA 2006) In 2006, the NQF Consensus Standards Maintenance committee (in the USA) was tasked with updating the Safe Practices for Better Healthcare developed in 2003. The committee recognised 14
the critical importance of the transition point of discharge and decided to expand a pre existing practice from a focus on promoting accurate communication about treatment and procedures to a broader comprehensive approach to hospital discharge that would be evidence- based and patient-centred and target existing systems failures. They coined the 4 C s which was composed of a crosswalk of requirements, cross language or synchronised descriptions where possible, cross credit opportunities, and cross communication of common performance targets. They stated that A Discharge Plan must be prepared for each patient at the time of hospital discharge, and a concise discharge summary must be prepared for and relayed to the clinical caregiver accepting responsibility for post discharge care in a timely manner. Organisations must ensure that there is confirmation of receipt of the discharge. Children s hospitals, specialty hospitals, small and rural hospitals, and outpatient testing facilities were addressed through the following: Though small and rural hospitals are resource constrained, the transmission of appropriate discharge information is often times even more important because many patients receive part of the diagnostic workup in small communities and then require more complex care in larger centres. Such information transfer can be vital to patient safety bi-directionally - both when patients go to larger centres and when they come back to be seen by primary practitioners in their home communities. Patients must have access to their records to help with the transfer of information. All requirements of this practice are applicable to children s health care settings. All requirements of this practice are also applicable to specialty hospitals. Such hospitals must transmit medical records and critical care information since patients will likely be admitted to other centres when they have conditions not addressed by specialty hospitals. Diagnostic test and procedural information can have direct and substantial impact on future treatment. The National Framework for Children and Young Peoples Care (UK 2010) In 2010 the Department of Health in England published the National Framework for Children and Young People s Continuing Care. The Framework describes the process that organisations should go through in assessing needs and putting in place bespoke packages of continuing care for those children and young people who require it because their needs cannot be met by existing universal or specialist services alone. It details the assessment phase of the process and describes the care pathway as it should be experienced by a child or young person with possible continuing care needs, and their family. It sets out the legal framework for children and young people s continuing care. This Framework sets out a continuing care process for children and young people that should: adhere to a set of core values, key principles and timetables; make the child or young person and their family the focus of the continuing care process and facilitate the provision of personalised packages of care; be developed and owned locally by a multi-agency team; cross organisational and inter-agency boundaries, thus reducing the possibility of fragmented care; and include measurement of outcomes and promote continuous quality improvement 15
Consultation took place with a wide range of stakeholders, including NHS practitioners and commissioners. Key concerns expressed were the complexity of healthcare needs for these children and young people; the critical role played by families in providing the majority of their care and supporting them to live at home; and the need for children, young people and their families to be partners in the continuing care process. Another strong theme was the importance of providing support that is high quality, responsive and well co-ordinated across the relevant agencies. These principles are central to the Framework. They developed an Assessment Toolkit including a Decision Support Tool and provided detailed advice on how to implement the assessment phase of the continuing care process. The assessment phase should capture and give due consideration to the needs of the whole family. Also, risk assessment should be undertaken during the assessment phase and should be used for appraising options for delivery of care. In continuing care, risk assessment can be used to make informed decisions about staffing levels, workforce numbers, equipment and back-up services. Risk management can be used to assess either clinical or environmental risk, as care, support and education will be provided in a variety of settings. Risk management has the potential to enable inclusion. Risk assessments may influence assessment of need or care package design in the following areas: clinical risk staffing levels equipment care environment moving and handling Risk assessment should be used to demonstrate whether there is a significant risk in terms of frequency, intensity, unpredictability, deterioration and instability of need where this may not be fully captured in the children and young people s Decision Support Tool. The children and young people s Decision Support Tool has been developed to bring assessment information together and present it in a concise, consistent way. The Decision Support Tool is not a stand-alone tool and should be used to pull together the other three key areas of assessment: the preferences of the child or young person and their family holistic assessment of the child or young person and their family including assessment of the carer reports and risk assessments from multidisciplinary team It is designed to help ensure that all relevant needs are assessed and captured and to describe and record an overall picture to inform local decisions about the care needed. The children and young people s Decision Support Tool is not intended to provide a process that results in uniform decisions about what continuing care should be provided to children and young people. Multi-agency/stakeholder involvement will be necessary to compile the information required to complete the children and young people s Decision Support Tool. This will include a child or young person and family-centred assessment, the child or young person s and their family s views and relevant professional and risk assessments. This approach should build up a detailed 16
analysis of individual needs, in a family context, and provide the evidence to inform the decision on the provision of a package of continuing care. The tool is not prescriptive, and evidence-based professional judgement should be exercised in all cases to ensure that the child or young person s overall level of need is correctly assessed. This process and the information collected will provide the basis for recommendations and cost options to be presented to the decision-makers. The children and young people s Decision Support Tool brings together needs from across 10 care domains, as follows: challenging behaviour communication mobility nutrition, food and drink continence and elimination skin and tissue viability breathing drug therapies and medicines psychological and emotional seizures Each care domain can have up to five levels of need, based on a mixture of complexity, intensity, unpredictability of need and risk to the child/young person: priority severe high medium low The needs described collectively in the care domains and levels of need in the children or young people s Decision Support Tool may not always adequately describe every child or young person and their family s circumstances. Professional judgement and clinical reasoning are paramount in ensuring that a child or young person s needs are accurately assessed, taken into account and given due weight when making a decision regarding their continuing care needs. All four parts of the assessment process interact in defining the child or young person s overall need for care. There may be circumstances, on a case-by-case basis, where a child or young person may have particular needs that do not appear to match the care domains described in the children and young people s Decision Support Tool. In this situation information from members of the multidisciplinary team and/or recent assessments and/or reports, should be used to determine the nature and extent of any other needs. The Framework provides a systematic approach to assessing the ongoing health needs of children and young people through: joined up services and commissioning building on existing assessments a process that is transparent and includes participation from the family and young person 17
In 2010 the Council for Disabled Children in England published guidelines on the discharge from hospital of children and young people with high support needs (Carlin Jeanne, 2010). The Guidelines are based on six basic principles: Different environments The child or young person with high support needs is moving from an environment where he/she is cared for by health staff to an environment where health agencies will provide support to a family to enable them to care for their child. Family life The support provided should enable the family to lead as normal a life as possible and should support the child to do the things that other children do, such as go to school or early years services, enjoy leisure and other activities, and access their local community facilities. Supporting parents to be parents Support should be offered in a way and at a level which ensures that parents are supported to be parents and take responsibility for their child in the same way as other parents do. This role should not be undermined or usurped by care staff. Recognising the parents needs Parents have a right to an adult life, and where this involves going to work, other avenues used by all parents, such as working tax credits, paid child care etc. should be explored and used. It is the additional costs, due to the child s condition, which may form part of the support package. A safe environment Support should be offered in a way which makes parents feel that it is safe to have their child at home. Parents will need a 24 hour contact link and care pathway for times when they have concerns about their child. Partnership and trust Planning discharge should be done in partnership with the family so that they develop a trust in the ability of the PCT to meet their needs flexibly. The Guidance states that: Prior to the planning meetings and assessment, hospital staff should not discuss the level of support (number of hours) a family should expect as this sets unrealistic expectations and may set up a conflicting relationship between the parents and the Primary Care Trust (PCT). It is important that support is not referred to in terms of nursing care as parents will expect carers to be registered nurses. 18
Some children will move from a tertiary hospital straight home while others will move first to the local district general hospital or to the children s hospice service before going home. If the child is moving to either a local hospital or hospice service then the service needs to be involved in the planning from an early stage. The child s support package should be based on an individual assessment of need of both the child and the family. Blanket rules about particular conditions requiring set levels of support are unhelpful. Appropriate staff from both the hospital and the PCT should be involved in carrying out this assessment. This may involve other agencies, for example, housing or social services. The assessment should recognise that the child s needs are likely to change and that the child may make progress between the time of the first meeting and the time they are discharged. House adaptations and the provision of equipment often takes a long time and the process of undertaking this work should run alongside the other aspects of putting together the care package. There should be local arrangements outlining a clear process for reaching agreement regarding funding. If the child is school-going age, his/her educational needs should be considered. Links to the child s school and peers is important to create a sense of normality. For pre-school children, involving local portage or pre-school services should be considered. The PCT needs to set realistic time frames in order to recruit, check and train staff to support the child. The arrangements to offer support vary considerably and the support may be offered through the PCTs in-house provider; through a team from the local hospital or through an external private provider. In future this support may be offered through an individual health budget, controlled by the family. The initial and ongoing training of support staff is an essential element of a support package. The PCT has a responsibility to ensure that the provider has appropriate skills, competencies and governance structures to support safe and effective care. The discharging hospital should support the PCT in meeting this responsibility. Support packages need to be sustainable and integrated into the child s care pathway. Sustainability of provision is as important as speed of discharge. Where there are disagreements between the family and the PCT over the support package, resolution at a local level should be attempted as early as possible. Families should be offered support through advocacy services. There needs to be clarity as to who has the ultimate responsibility when the child is at home. In some areas an agreement or contract is drawn up between the family, PCT and discharging hospital. The support package should be reviewed on an agreed regular and ongoing basis (at least once a year). Parents should be made aware that packages of support are likely to increase and decrease as needs change. 19