Report of the Taskforce on Paediatric Cardiac Services. 6 August 2006

Transcription

1 Report of the Taskforce on Paediatric Cardiac Services 6 August 2006

2 Executive Summary Queensland s children and parents are fortunate to have been served over past decades by two great children s hospitals the Royal Children s Hospital and the Mater Children s Hospital and by the expertise of cardiac surgeons and other highly trained staff at The Prince Charles Hospital. The outcomes of the recent Review of Paediatric Cardiac Services, chaired by Professor Craig Mellis (the Mellis Review), indicated that Queensland s growing population may be best served for the future by a new model of care. The Mellis Review initially focussed on the provision of paediatric cardiac services in a cardiac unit at The Prince Charles Hospital. However, during the course of the review, the Review Panel formed the view that the problems that it identified with these services were in large part attributable to the fragmentation of paediatric tertiary services in Queensland between The Prince Charles Hospital, the Royal Children s Hospital and the Mater Children s Hospital. A key theme of the Mellis Review was that this fragmented model of delivering paediatric tertiary services in Queensland was unsustainable and not in the interests of children. The Mellis Review recommendations not only included the need to ensure that all infants and children with cardiac disease are operated on in a tertiary children s hospital, but that all of the paediatric services at the three hospitals be transferred to a new, single Queensland Children s Hospital. The Taskforce on Paediatric Cardiac Services was established by government on 27 March 2006 in response to the Mellis Review recommendations. The terms of reference of the Taskforce are annexed as Attachment A to this report. Taskforce membership included clinical specialists, parents (including parents of children with congential heart conditions), and senior Queensland Health managers including the Director-General, who chaired the Taskforce. A complete list of the members of the Taskforce is annexed as Attachment B to this report. The Taskforce met formally on four occasions and received more than fifty written submissions between 1 April 2006 and 30 June A complete list of submissions is annexed as Attachment C to this report. Taskforce deliberations were based on the expertise of Taskforce members, site visits to The Royal Children s Hospital (RCH), The Mater Children s Hospital (MCH) and The Prince Charles Hospital (TPCH), written submissions received by the Taskforce, and analysis of relevant material including: reviews of tertiary paediatric services in Queensland; reviews of tertiary paediatric services in other jurisdictions, nationally and internationally; current and projected data on paediatric service delivery in Queensland; and identification and analysis of three principal approaches to the delivery of hospital paediatric services in general and tertiary services in particular. 2

3 In addressing its terms of reference, which focused on the systems changes required to improve services to children, the Taskforce sought to answer the following questions: Is the single children s hospital, as recommended in the Mellis Review, the service delivery model that ensures that the children of Queensland receive the optimal standard of paediatric cardiac care? If so, what are the ways in which this model might be implemented in Queensland and what are the implications of this approach for the provision of paediatric services as a whole? If not, what alternative models should be considered and why might they be more appropriate? The Taskforce identified two key principles fundamental to achieving its task: that any new service should be based on best evidence in the treatment of children and the inclusion of families in their care; and that any new service should maximise the opportunity for research and recruitment, training, retention and accreditation of a specialised paediatric workforce. The Taskforce endorses the main recommendation of the Mellis Review that a new single children s hospital, called the Queensland Children s Hospital, should be built. The Taskforce also recommends that the new hospital should incorporate all paediatric services currently provided at the Mater Children s Hospital, the Royal Children s Hospital and The Prince Charles Hospital and be the hub of a State-wide paediatric and adolescent services network. After considering the options for establishing a new hospital, the Taskforce concludes that it should be located adjacent to the Mater Hospital or the Royal Brisbane and Women s Hospital to gain the benefits not only of the proud history of the south-east children s hospitals, but also to enable access to the range of specialist services needed to ensure that children receive optimal care. The final decision about the site for a new hospital is a matter for Government. To assist Government in determining this issue, the Taskforce developed a range of criteria and assessed all available options against those criteria. The results are set out at Section F of the report. Ensuring the best possible care for our children is about more than just a building. Following Government s decision to establish a Queensland Children s Hospital, the Taskforce considers that a senior clinical leader should be appointed immediately to deliver an integrated planning process that engages clinicians across the three affected hospitals. This process could involve extensive consultation and collaboration with all stakeholders, including other paediatric clinicians, parents and patients. A priority for the planning process should be the creation of a new, single, childcentred culture that overcomes current barriers to achieving a unified service. These 3

4 barriers result from the physical distance between the existing hospitals and from long-standing cultural and relationship issues. Another key issue that the Taskforce wishes to see addressed is the need for better services for young people and adolescents, including transitional services to adult care. Establishing a new Queensland Children s Hospital will take at least three to five years. The Taskforce has made a number of interim recommendations to manage the current service more effectively in the meantime. These emphasise the need to improve the safety and effectiveness of paediatric cardiac services at TPCH until these services can be moved to an interim location, preferably on the site of the new children s hospital, within 12 to 18 months. The Taskforce recommends that additional resources should be made available to support these interim arrangements and that clinical staff should be directly involved in developing transitional and long-term plans. 4

5 Contents Executive Summary... 1 B. Paediatric Health Services in Queensland... 8 Tertiary Paediatric Services...8 General Paediatric Services...9 Queensland paediatric health care activity data...9 C. Reviews of paediatric services and models of care Queensland reviews of paediatric services...14 International reviews of paediatric services...16 Models of care identified in the reviews...20 D. Submissions E. The need for a new, single Queensland Children s Hospital Provision of paediatric cardiac services in an adult cardiac unit...29 Provision of paediatric intensive care services...29 Benefits of a single tertiary children s hospital...30 F. Assessment of options for a new Queensland Children s Hospital G Where to from here? More than just a building H. Interim arrangements for paediatric cardiac services currently provided at The Prince Charles Hospital Attachment A Terms of Reference...50 Attachment B Membership of Taskforce...51 Attachment C Submissions to Taskforce...52 Attachment D Paediatric Cardiac Services Taskforce Current Service...54 Attachment E Profile of Tertiary Services and current linkages between main hospitals in Brisbane

6 Recommendations In its deliberations, Taskforce members agreed that any recommendations should be based on best evidence on the treatment of children and the inclusion of families in their care. The Taskforce recommends the following: A new Queensland Children s Hospital 1. A new single children s hospital, to be called the Queensland Children s Hospital, should be built within five years. 2. The new Queensland Children s Hospital should be the hub of a State-wide paediatric and adolescent services network. 3. The Queensland Children s Hospital should incorporate all paediatric services, both tertiary and general, currently provided at Mater Children s Hospital, Royal Children s Hospital and The Prince Charles Hospital. 4. The Queensland Children s Hospital should be located adjacent to the Mater Hospital or the Royal Brisbane and Women s Hospital. 5. Government should note the Taskforce s initial analysis of relative suitability of the two sites and potential budget implications. Further detailed analysis of sites and budget implications is required. 6. Government should make an early decision on a preferred site for a new children s hospital, in order to support appropriate service planning and safety considerations. 7. Following Government s decision on a preferred site for a Queensland Children s Hospital, a senior clinical leader should be appointed immediately to manage an integrated planning process that engages clinicians at The Prince Charles Hospital, the Mater Children s Hospital, and the Royal Children s Hospital and across the State. 8. A priority for the planning process should be the creation of a new, single child-centred culture for the new paediatric hospital. 9. The planning process should also involve extensive consultation and collaboration with other stakeholders, parents and patients. 10. The new Queensland Children s Hospital should include services for young people and adolescents, including transitional services to adult care. 11. Improved research capacity needs to be an important feature of the new hospital. 6

7 Interim Arrangements 12. As a matter of urgency, safety and sustainability, paediatric cardiac services at TPCH should be improved through additional resources. 13. Paediatric cardiac services should be moved to a new location at a tertiary paediatric centre within months, preferably to the future site of the new children s hospital. 14. The currently planned redevelopment of the paediatric intensive care unit and paediatric ward at TPCH should not proceed. 15. Appropriate steps should be taken to ensure that clinical staff in TPCH are directly involved in the planning of transitional and long-term arrangements. 16. The new clinical leader will be responsible for the planning and implementation of agreed interim arrangements. 7

8 B. Paediatric Health Services in Queensland Paediatric health care includes the range of health care provided to infants and children, including primary and community-based health care and hospital care. In Queensland, hospital care is provided to infants and children across the State by public and private hospitals. Hospital care for children can be divided into two categories. High intensity, tertiary paediatric care can be delivered by dedicated specialists who are specifically trained in a paediatric super-specialty; and lower intensity, general paediatric care can be delivered by specialists in general paediatric medicine. It is noted that some paediatric sub-specialties, particularly in surgical disciplines, are provided by specialists who also provide services to adults. Tertiary Paediatric Services Tertiary paediatric services can include particular medical or surgical sub-specialties of paediatrics such as paediatric neurology, paediatric oncology and paediatric neuro-surgery. Tertiary services can also include super specialist services for children with the most complex needs, whose treatment is likely to involve multiple specialists and sub-specialists. Complex paediatric cardiac surgery falls into this category, as does, for example, clinical genetics, transplantation services and cranio-facial surgery. Queensland s tertiary paediatric services are predominantly provided by The Mater Children s Hospital (MCH) and the Royal Children s Hospital (RCH). The various tertiary and State-wide services provided by these two hospitals were mapped out in Queensland Health s Strategic Planning Process for sub-speciality and Superspeciality Paediatric Services (2002). With respect to paediatric cardiac surgery, the same strategic planning process concluded that complex cardiac surgery and invasive cardiac assessment should be provided from a single site at TPCH but only until such times as the then current review had concluded. Tertiary paediatric services currently provided by MCH and RCH, other than paediatric cardiac services which are provided at TPCH, are set out below. 1. Paediatric services provided solely by RCH. Clinical Genetics Liver transplantation Haemophilia Service Burns Service Gastroenterology Service Cerebral palsy Rehabilitation 8

9 2. Paediatric services provided solely by MCH Renal Transplantation Service Sleep Disorders Epilepsy Complex Cranio-facial surgery services 3. Paediatric services provided by both MCH and RCH at two (or more) sites: Metabolic Medicine Service Cochlear Implant Service Oncology Service Medical Imaging Respiratory Service Neurosurgery Service Paediatric Intensive Care Service Neurology Service Endocrinology Service Orthopaedic Service Developmental Paediatrics Cardiology services Further detail on tertiary and associated services provided across the main hospitals in Brisbane is annexed in Attachment E to this report. General Paediatric Services Low risk, high volume, paediatric treatment and care take place on a daily basis, in regional hospitals across the State. This includes general medical and general surgical interventions for children by specialists who may also treat adults. The great majority of hospital paediatric care falls into this category. In addition to providing tertiary paediatric care, the RCH and MCH also provide general paediatric treatment and care for children in their catchment areas. TPCH provides no general or tertiary paediatric care other than paediatric cardiac services. Queensland paediatric health care activity data Total hospital paediatric activity The total of all hospital paediatric (children 0-14 years) separations in 2004/05 was 149,685. Of these 38,783 were privately-conducted procedures (see table below). It should be noted that figures available for use in this discussion paper only relate to children 0-14 years, but not to children aged 15 and 16 years who are admitted to the 9

10 three children s facilities in question. The source of the following data is Queensland Health s Acute Inpatient Data Collection The following table breaks activity down by Area Health Service: Table 1 : 0-14 Age Group All Separations 2004/05 Sum of Separations Area_of_Treatment Southern Area of Residence Northern Central QH Mater Public All Private Hospitals Grand Total Northern 19,247 1, ,964 26,648 Central , ,104 13,208 52,747 Southern 56 6,388 26,908 15,089 18,583 67,024 Interstate/Unallocated Qld 263 1, ,266 Percentage 13% 31% 30% 26% 100% Grand Total 19,741 46,598 27,853 16,755 38, ,685 (Source: 2004/05 QH Acute Inpatient Data Collection) The following chart graphically illustrates the geographical distribution of the above paediatric activity. To aid understanding of the contribution of the Mater Hospital it is presented separately in the following diagram. As noted above when the percentage of public paediatric activity conducted at the Mater is added to that done elsewhere in the Southern Area, the total equals 30 %. Northern Central Southern Mater Private Private, 26% Northern, 13% Mater, 11% Southern, 19% Central, 31% RCH, MCH, TPCH paediatric separations In 2004/05, RCH recorded 15,555 paediatric inpatient separations, the MCH recorded 12,748 paediatric inpatients and the TPCH recorded 749 paediatric inpatient separations. This totals 29,052 paediatric inpatient separations across the three children s services. These are broken down into service related groups in the table which follows. In addition, during the same period, 3964 inpatient paediatric patients were treated at Mater Mother s Hospital. When included, the total number of children admitted as inpatients increases to 33,016 for 2004/05. 10

11 A further 3754 paediatric inpatients were treated privately at Mater Private Hospital in 2004 /05. The following table provides a breakdown of paediatric separations across the MCH, RCH and TPCH. Table 2 Breakdown of Paediatric Separations across MCH, TPCH, and RCH Specialty Related Group MCH Separations TCPH Separations RCH Separations Total Separations Cardiology Interventional Cardiology Dermatology Endocrinology Gastroenterology Diagnostic GI Endoscopy Haematology ,448 Immunology & Infections ,023 Medical Oncology Chemotherapy & Radiotherapy ,095 1,410 Neurology ,046 Renal Medicine Respiratory Medicine 1, ,369 2,948 Rheumatology Non Subspecialty Medicine 1, ,962 3,806 Breast Surgery Cardiothacic Surgery Colorectal Surgery Upper GIT Surgery Head & Neck Surgery Neurosurgery Dentistry Ear, Nose & Throat 1, ,539 2,854 Orthopaedics 1, ,786 Ophthalmology Plastic & Reconstructive Surgery Urology Non Subspecialty Surgery 1, ,340 3,283 Transplantation Extensive Burns Tracheostomy Gynaecology Qualified Neonate Unqualified Neonate Drug & Alcohol Psychiatry Acute Unallocated Non-acute

12 Grand Total 12, ,555 29,052 (Source: 2004/05 QH Acute Inpatient Data Collection) The following table breaks down the above total admissions data into emergency and non-emergency paediatric separations for children 0-14 years in each of the three hospitals. Table 3: Emergency and non-emergency paediatric separations for children 0-14 years across MCH, RCH and TPCH MCH Separation RCH Separations TCPH Separations Emergency , Non-emergency , Current Resource Commitment The current paediatric service provided by MCH, TCPH and RCH provides a total of around 296 paediatric beds, of which 21 are paediatric intensive care beds. Of the 275 inpatient / day surgery beds, 160 are at the RCH, approximately 95 are public beds in the MCH (the Mater also has 32 private children s beds) and 20 are in TPCH. Of the 21 paediatric intensive care beds, 8 paediatric intensive care beds are available at the MCH and RCH sites respectively and 5 at TPCH. Resources currently allocated across Royal Children s Hospital, The Mater Children s Hospital and The Prince Charles Hospital for the provision of children s services and a further activity breakdown are annexed in the service profile, Attachment D. Projected population increases Population increases in Queensland are likely to lead to corresponding increases in demand for health services. The projected increases in the children s population for Queensland (0-14 yrs) are outlined in the table below. While projections may not be realised, it is worthwhile noting that based on population growth, demand for paediatric services in the Southern Area Health Services region is projected to grow at three times the rate of demand for paediatric services in the Central and Northern Area Health Service regions. 12

13 Table 4 Population projections for 0 14 years from 2001 through to 2021 Zone 2001 Population 0-14 years Population Projections 0 14 years 2016 Percentage Increase 2021 Percentage Increase Northern 136, , % 141, % Central 296, , % 307, % Southern 364, , % 402, % TOTAL 797, , % 851, % (Source: 2001 population figures are based on 2001 Census data. Projections were provided by Queensland Health planning data.) 13

14 C. Reviews of paediatric services and models of care Queensland reviews of paediatric services Since the early 1990s a range of reviews of paediatric services have taken place without resulting in a significant resolution of the issues considered. 1992/1993 South East Queensland Hospital Services Planning Project A review of paediatric services in general conducted in 1992/93, as articulated in the South East Queensland Hospital Services Planning Project paper (March 1993), identified three options for the future development of paediatric services, namely: to consolidate the two paediatric hospitals (RCH, MCH) into a single tertiary paediatric hospital; to retain two tertiary specialist paediatric hospitals; or To create one major tertiary centre (RCH) and retain the other paediatric hospital as a major hospital servicing South Brisbane with limited tertiary specialisation. The recommendation in 1993, was that more detailed analysis and consultation is required to determine whether these or other options should be accepted Strategic Planning Process for sub-speciality and super-speciality Paediatric Services The 2002 Strategic Planning Process for sub-speciality and super-speciality Paediatric Services sets out the various tertiary paediatric services to be provided by MCH and RCH. Additionally it concluded that: complex cardiac surgery and invasive cardiac assessment were to be provided from a single site at TPCH; visiting cardiac surgeons from TPCH would perform surgery for a limited number of stated procedures at both the RCH and MCH; and outpatient clinics would be provided to the RCH by staff from TPCH (private practice clinics) and by the MCH cardiologist at the Mater Children s Hospital. Further, the process concluded that these arrangements were subject to further review of paediatric cardiac services and paediatric intensive care services Paediatric Intensive Care Services Discussion Paper In recognition of the need to reorganise Paediatric Intensive Care Services, an initiative was undertaken in March 2004 to establish an integrated Paediatric Intensive Care service (QPICs). 14

15 The discussion paper on QPICs was prepared by Dr Anthony Slater, the Director of the Queensland Paediatric Intensive Care Services in November 2004 and submitted to the Queensland Health Systems Review in July The discussion paper identified issues that needed to be addressed to ensure the success of the Paediatric Intensive Care service, in particular, problems arising from the splitting of the service into three small units. Problems identified included that all three units were smaller than the recommended minimum size, dilution of clinical experience, impediments to establishing effective teamwork, difficulty in maintaining an adequate skills base in all three units, and that the structure was highly inefficient and expensive. The discussion paper identified the location of the Paediatric Cardiac Service as being central to the need for reorganisation of the paediatric intensive care. The discussion paper recommended, amongst other things, that the number of paediatric intensive care units (PICU) in Brisbane be reduced from three to two and that this be achieved by the relocation of the paediatric cardiac services to a children s hospital, with one of the two units established as a large Level III PICU that provides complex care, and the other as a smaller Level II unit Queensland Health Systems Review The Final Report of the Queensland Health Systems Review (Forster) stated that: the duplication of expensive tertiary paediatric sub-specialty services at both the Royal Children s Hospital and the Mater Children s Hospital does not appear to be a sustainable model. Rationalisation is recommended to improve service sustainability, maximise available resources and reduce pressure on staff currently experiencing onerous on-call arrangements Review of Paediatric Cardiac Services (the Mellis Review) The Review of Paediatric Cardiac Services (the Review) was commissioned by the Director-General of Queensland Health primarily in response to previously expressed concerns about a series of deaths following paediatric cardiac surgery at The Prince Charles Hospital. Additionally, the Coroner made a recommendation that Queensland Health consider the best approach to the delivery of specialist cardiac services following the death of a child at the Royal Children s Hospital. As indicated above, the Queensland Health Systems Review also stated that the duplication of tertiary paediatric sub-specialty services at the Royal Children s and the Mater Children s Hospitals appeared unsustainable. While the terms of reference of the Mellis Review focussed on paediatric cardiac services, the Review panel assumed a broader brief and made significant systemic recommendations about the delivery of all paediatric services. It also expressed the view that the Norwood procedure should not be performed in Queensland, at least until a properly staff Paediatric Cardiac Service has been established at TPCH (at p.12). Queensland Health has suspended performing the 15

16 Norwood procedure in Queensland since September 2005 as a result of an earlier clinical audit. The key systemic themes of the Review were: The current fragmented model is unsustainable and the interests of children would be best served by consolidating the current paediatric services into a single children s hospital, to be called the Queensland Children s Hospital. Once commissioned, the existing children s hospitals would close, and paediatric services would move from The Prince Charles Hospital to the new hospital. Paediatric services should be consolidated into single, dedicated children s hospitals rather than integrated into larger, general hospitals. Both models operate in significant institutions around the world. The Prince Charles Hospital paediatric cardiac unit is in an unsatisfactory and unsustainable condition, characterised by chronic understaffing, dysfunctional governance, lack of infrastructure, lack of clinical leadership, and unsympathetic line managers. Morale is poor and the unit is no longer able to meet current expectations and standards. While the long-term response (5 years) is the establishment of the new hospital, the interim response is to immediately establish an integrated paediatric cardiac program, with all staff currently treating children reporting to the Royal Children s Hospital and additional funding from Queensland Health to be provided through the Royal Children s Hospital. Increases in staffing and service provision are required, including the need to increase the number of FTE paediatric cardiologists from 3.8 to 9 over five years. Importantly, the Report found that individual paediatric cardiac clinicians are competent and responsible. International reviews of paediatric services Paediatric services have also been the subject of extensive reviews at the international level Report of the Public inquiry into children s heart surgery at the Bristol Royal Infirmary (the Kennedy report) The Kennedy Report is recognised the world over as a seminal piece in defining best practice in the treatment of hospital paediatric patients and, in particular, paediatric cardiac patients. In the period between 30 and 35 more children under one died than might have been expected after open heart surgery in the Bristol Unit. The service offering paediatric heart surgery at the time was split between two sites, had no dedicated paediatric intensive care beds, no full time paediatric cardiac surgeons and too few paediatric nurses. The Kennedy report identified widespread systems failure, 16

17 uncertainty about who was responsible for what, how things got done, and a system where concerns took years to be taken seriously. The Kennedy Report made 200 recommendations, a number of which are relevant to our own circumstances. Relevant recommendations included: Rec 177. There must be greater integration of primary, community, acute and specialist health care for children. Rec 178. Children s acute hospital services should ideally be located in a children s hospital, which should be physically as close as possible to an acute general hospital. This should be the preferred model for the future. Rec 181. Specialist services for children should be organised so as to provide the best available staff and facilities, thus providing the best possible opportunity for good outcomes. Advice should be sought from experts on the appropriate number of patients to be treated to achieve good outcomes. In planning and organising specialist services, the requirements of quality and safety should prevail over considerations of ease of access. Rec 193. With regard to paediatric cardiac surgery, standards should stipulate the minimum number of procedures that must be performed in a hospital over a given period of time. Paediatric cardiac surgery (PCS) must not be undertaken in hospitals that do not meet the minimum number of procedures. Considerations of ease of access to a hospital should not be taken into account in determining whether PCS should be undertaken at that hospital. Rec 194. With regard to surgeons who undertake paediatric cardiac surgery, although not stipulating the number of sessions sufficient to maintain competence, it may be that 4 sessions per week should be the minimum number required (it is noted that Taskforce members raised that there has been some debate about whether the 4 sessions referred to in the recommendations were paediatric cardiac surgery sessions or paediatric/adult cardiac surgery sessions) Specialised Paediatric Services Review Report of the Ministers Advisory Committee Ottawa, Canada The review provided the Minister for Health and Long-Term Care with recommendations for the future delivery of specialised paediatric services in Ontario, Canada. The review built on the work of the Canadian Health Services Restructuring Commission s provincial review of specialized paediatric services, which highlighted, in relation to paediatric and adult cardiac surgery, a relationship between low volumes of work and higher mortality rates (p.11). Key considerations of the review included: changes in paediatric cardiac surgery practice; 17

18 the positive relationship between volume of work and outcomes; the need to focus on the best interest of children; interdependencies among paediatric cardiac surgery, paediatric cardiology and other paediatric programs (including the impact that a transfer of paediatric cardiac services to a hospital would have on demand for its other paediatric programs); accessibility; and program cost. Recommendations included the need for coordination of tertiary paediatric services in the province; centralising of tertiary paediatric cardiac surgery on one site; centralising on-site surgical back up and immediate post-operative intensive care; and the creation of a regional model for paediatric intensive care The Report of the Paediatric and Congenital Cardiac Services Review UK This review was one of a number in the UK that followed and built on the recommendations of the Kennedy Report. Following a review of 14 facilities, the Paediatric and Congenital Cardiac Services Review Group determined that in terms of paediatrics as a whole, there remained a mix of paediatric and adult work being done in some units whilst others concentrated purely on children. The review team found there was no evidence to suggest that one model was inherently superior to any other. The key criterion appeared to be a commitment to a service tailored to meeting the changing needs of the child. Similarly, it found that no one model was consistently better at handling the transition to adult services. The report found limited evidence to support or help determine what a minium number should be. The report referred to an American study of paediatric congenital cardiac surgery which concluded that mortality risk was lower at an institution performing more than 300 cases annually. This led the Review Group to recommend a threshold for cardiac surgery in children at this level and endorse the Kennedy recommendation that four operating sessions per week would prevent occasional practice for surgeons. This report also concluded that the care of patients with a congenital heart condition does not begin and end at the tertiary centre. For many patients who live some distance away it is essential that local health services provided by hospital and community-based staff can support them. 18

19 2003 Getting the right start: National Services Framework for Children (NSF) Standard for Hospital Services Department of Health UK Issued by the NHS Department of Health in a further response to the Kennedy report, this framework was one of the first in the UK. The document set a standard for the care of children and young people when they are in hospital. It advised that child friendly hospitals recognise that children are not the same as adults. The NSF suggested that: there is nothing we can do to completely take away (children s) concerns but there is a lot we can do to improve the way hospitals care for children so they can get on with the important business of childhood and growing up. That means designing hospital services for children from the child s point of view. The NSF advised that child-centred hospital services are those that: consider the whole child, not simply the illness being treated; treat children as children, and young people as young people; are concerned with the overall experience for the child and family; treat children, young people and parents as partners in care; integrate and co-ordinate services around the child and family s particular needs; graduate smoothly into adult services at the right time; and work in partnership with children, young people, and parents to plan and shape services and to develop the workforce. In highlighting the differences between services for children and adults the NSF said: Children are different from adults, so they need distinct and tailored services. Children s physiology differs from that of adults and changes as they grow and develop. Children suffer from a different range of diseases and disorders to those commonly seen in adults. This includes a higher proportion of rare and often complex congenital and inherited disorders. Children s mental capacity and level of understanding, for example about their bodies, illness and death, may differ from that of most adults, and changes as they develop. Children s legal status, for example, in respect of consent to treatment, differs from that of adults, and changes, in the eyes of the courts, at certain key points in chronological age, and with developmental and emotional factors. Children are more vulnerable than most adults, and have a greater need for safeguarding their welfare. Children using health services are usually accompanied by a parent or other responsible adult. This person may have distinct legal rights in respect of the child, for instance over consent to treatment. They will also have their own needs, for example, for explanation and reassurance. 19

20 - Children are strongly affected by the context in which they live. Usually the most important element of this context is the family; followed by friends, school, neighbourhood and community. - Children will become adults; and there is a growing understanding of the effects of childhood experiences, including illness, on their adult life. The NSF advised that for parents and children, one of the biggest areas of frustration is the seeming lack of integration between different elements of service: different organisations, even different services or departments in the same hospital, not sharing information, not coinciding timings or consultations; and not being in tune. In a similar vein, it declared that children with complex health needs often require input from a number of different specialties. This requires careful coordination, if the parent is not to be left as solitary lynchpin in a chaotic system. Parents have expressed the need for a key worker to help them negotiate their way around the system and support them in accessing the different services available. In terms of transition from child services to adult services, the NSF advised that young people with long-term conditions need preparation for the move from children s to adult services. All young people with ongoing health needs should have a plan developed with them for the transition of their care to adult services, which is coordinated by a named person. The NSF for Children also focuses on tertiary services. It suggests that: Children s services should have robust arrangements for timely access to tertiary care when needed: both for emergency transfers to a specialised (regional) centre for instance for paediatric intensive care or surgery; and for planned referrals for example to cardiology, neurology, or renal care, for assessment. Models of care identified in the reviews Literature examined by the Taskforce referred to three models of paediatric health care relevant to the Taskforce terms of reference, namely: a combined model, where cardiac surgery is provided to adults and children in the same hospital facility; a child-centred model, where general and tertiary paediatric services, including cardiac surgery, are provided to children in a dedicated children s hospital; and a network model, where services to children are delivered through a number of networked facilities. While the combined model and child-centred model are mutually exclusive models, both are compatible with a network model. 20

21 Combined model Description In this model paediatric cardiac surgery is undertaken in a cardiothoracic unit which is part of a large acute general hospital. Generally, there are both dedicated paediatric surgeons and surgeons who operate both on adults and on children on site. Children s wards and facilities are likely to be adjacent to adult wards and facilities and resources are sometimes shared between the two. This approach is the closest to that employed in TPCH. Examples include; 1. The Newcastle upon Tyne Hospitals NHS Trust,UK ( 2. The Royal Brompton and Harefield NHS Trust ( Children and Adult heart surgery is also undertaken in facilities dedicated solely to the treatment of heart disease. These Heart Institutes are often national centres of excellence. They can be stand alone or built adjacent to general hospital facilities. 3. The German Heart Institute Berlin ( 4. The Baroda Heart Institute and Research Centre (BHRIC),Gujarat, India (www. bhirc.com) Strengths Clinical outcomes for children are equivalent to those obtained where other models are practiced. Surgeons with adult practice in the same hospital are able to provide continuity of care for their paediatric patients into adulthood. Surgeons can uphold their surgical competence through a mix of adult and paediatric practice. There are benefits that come with shared infrastructure and technology essential for cardiac services, for example ECG and some diagnostic equipment. Weaknesses Children are not just small adults and have medical and surgical problems and needs that require a full range of children s services around them. Following a series of reviews that highlighted the special needs of children, separation of children on the basis of organs is increasingly out of favour in 21

22 many countries including Australia, New Zealand, the United Kingdom and the United States of America. A child/adult facility is unlikely to be able to attract and keep the full range of paediatric staff required to adequately meet the needs of children. A combined approach to child/adult care does not lend itself to appropriate levels of training for professionals who wish to maintain their current skills or develop new ones there is often a need to share staff. A limited child and family friendly environment is likely to exist in a joint child/adult facility. A child facility in an adult hospital may have difficulty in competing for additional funding and resources. Child centred model Description In this model paediatric cardiac surgical services are provided from purpose-built paediatric hospitals that provide a full range of secondary, tertiary and support services. This approach is closest to that employed at the Royal Children s Hospital and the Mater Children s Hospital at present for tertiary paediatric services other than paediatric cardiac surgery. Examples of paediatric facilities that provide a full range of general and tertiary services include: 5. The Royal Children s Hospital, Melbourne ( 6. The Great Ormond Street Children s Hospital, London ( 7. The Hospital for Sick Children, Toronto ( 8. The Starship Children s Hospital, Auckland ( ) 9. The Children s Hospital of Philadelphia ( ) 10. The Texas Children s Hospital ( ) Strengths Onsite availability on site of highly trained, experienced, specialist paediatric anaesthetists and paediatric intensive care physicians. Availability of other paediatric services and specialists that children may need to access quickly (such as paediatric intensive care, paediatric CT and MRI, 22

23 fetal cardiology and interventional cardiology, paediatric respiratory physicians, paediatric nephrologists and paediatric surgeons). Increased levels of paediatric nursing and dedicated allied health staff (such as paediatric physiotherapists, occupational therapists). Dedicated paediatric intra-operative and post-operative equipment designed specifically for use in neonates, infants and children. Better access to funding and resources (such as data retrieval and info management). The specific needs of sick children are understood and do not always have to be justified (such as facilities for families). Easier to attract trained staff, provide job satisfaction and dedicated 24-hour cover. Easier to provide training and plan workforce more efficient long term. This model is now the preferred model across the world and supported by evidence in the literature. Weaknesses Transition from childhood to adulthood including the most appropriate age to make the transfer is likely to be problematic if care is provided in different facilities. Access to one dedicated tertiary facility if paediatric services are centralised could be problematic both in a geographical sense for those who live regionally and in a demand sense as population numbers grow. Network model In the network model, children s services are provided from a range of dedicated children s facilities for the most specialised services (the hub) and a range of intermediate and smaller facilities for the less major work (the spokes). The reality is that most paediatric service providers operate within a network of feeder hospitals, especially where tertiary services are required. The extent to which these network arrangements are managed varies. However, whether tertiary paediatric services are provided in a dedicated children s facility or in a joint child/adult unit, evidence suggests that robust service networks have the 23

24 potential to organise services efficiently and effectively and break down barriers between providers. Description of Networks A range of clinical network models exist. Enclave networks closely resemble the existing collaboratives and comprise groups of clinicians, mutual learning, standardisation and measurement of patient care outcomes. These tend to have a flat structure with no central authority and are based on a shared commitment. They are generally useful in sharing information and growing ideas. Hierarchical networks have a whole-of-organisation perspective and are characterised by a central body that provides leadership and guidance to the group. They have all the functions, roles and support of enclave networks, but in addition they have more proactive management, a key role in the planning and delivering of services and a degree of budgetary authority. Typically led by a clinical director, this type of managed network has an expanded role in developing consensus advice about planning, workforce issues and operational services and in leading changes within the relevant peer group. Individualistic networks are those in which an individual or organisation develops a loose association of affiliates. They are often based on the procurement of network services through negotiation of contracts with a range of providers. Strengths Enclave networks: shared commitment, trust, bottom up legitimacy, promotes sharing of information Hierarchical networks: coordination and control of larger projects, quality improvements, clarification of complex divisions of labour Individualistic networks: innovative, flexible and responsive to change Weaknesses Enclave networks: subject to the commitment and motivation of members, may fail when enthusiasm fails, may lack resources Hierarchical networks: over-regulation may limit scope for innovation and attractiveness to members, who also may not appear to provide proportional benefits 24

25 Individual networks: high levels of transaction costs, conflict and competition between agencies Examples of Clinical Networks include: 1 The New South Wales Paediatric Services Network ( ) 2 The Cardiac Care Network of Ontario ( 3 The Yorkshire Cancer Network ( cancernet.org.uk ) 4 The South East London Clinical Cardiac Network ( ) 5 Managed Clinical Networks in Scotland ( 25

26 D. Submissions The Taskforce received 51 written submissions from a range of interested parties including Australian Medical Association Queensland, Royal Australian College of Surgeons, Royal Australian College of Physicians, Queensland Ambulance Service, University of Queensland and James Cook University. The Taskforce also received submissions from doctors, nurses and allied health professionals responsible for delivering hospital paediatric care and parents of children with congenital heart disease and other life long medical conditions. The Taskforce also received a submission from a young patient who is currently undergoing treatment at The Prince Charles Hospital. A list of written submissions received by the Taskforce is contained in Attachment C to the Report. The key themes emerging from the submissions were: The overall view expressed was one of: strong support for long-term recommendations in Mellis report; a desire to see the treatment and care of children prevail over the self interest of individuals and institutions; and the need for a decision to be made one way or another the status quo is regarded as unsustainable. From an organisational perspective there was: general support for the concept of a single tertiary paediatric hospital as a centre of excellence; support for one governance structure across a network of tertiary paediatric services similar to the Scottish model; support for strategic planning of tertiary paediatric care from a State-wide as opposed to Brisbane perspective; suggestion in a small number of submissions that there should be a paediatric tertiary centre for North Queensland linked with a hub in Brisbane; support for State-wide extension of tertiary paediatric outreach; confusion around the independent status of the Mater Children s Hospital; a recurrent view that the planned new ICU and paediatric ward for TPCH should not go ahead; a view that any interim arrangements cannot be the long-term solution; support for a unique patient number, belief that shared file management between providers would improve care and efficiency, which would also facilitate data collection and performance review; concerns about the impact of change on the number of available paediatric beds; and recognition that a new tertiary centre on a greenfield site would be the most expensive option and had the potential to duplicate support services unnecessarily. 26

27 From a patient and family point of view: There were concerns that support for parents varied between hospitals, with parent members commenting that parents/families are often on the one hand left as main carers and on the other confused about the system, not supported in the hospital environment and not part of the communication or decisionmaking process. There was confusion about staff turnover in the current service, questions about who is in charge, how staff can be reached and the fact that some staff and management can be unresponsive. There were concerns from parents and children around practical issues such as availability of food, appropriate play areas and materials, lack of telephone or access with family and friends. Families do not generally live in Brisbane s Central Business District, so onsite accommodation for families whose children are in hospital is a key requirement for any new facility. From a clinical point of view there was: strong support for movement of current paediatric cardiac services as a matter of urgency, acceptance that these services are not currently optimal, especially when considering the risks involved in transporting sick children; agreement that many with congenital cardiac conditions will have other associated anomalies therefore paediatric cardiac care cannot be seen in isolation from access to a full range of other paediatric services; agreement that on-site access to obstetric and neonatal services is essential; recognition of the key role played by paediatric cardiology, most children who access cardiac services do not require surgery; recognition that tertiary paediatric hospital care is but one point on the continuum and that general paediatric services and community paediatric service provision also have a key role; need to address the lack of adolescent services and transition care; agreement that meeting standards of best practice must be a minimum requirement of a new service; and support from clinicians, families and patients for more investment in clinical research. From a workforce perspective there was: agreement that tertiary paediatric care was under-resourced and resources were dispersed; recognition that one tertiary paediatric centre will better support research as well as staff recruitment, retention, training and accreditation; 27