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Young people with chronic illness and/or disability: planning across health services and through organisational restructures Print E-mail
The Quarterly 2014


In this case study, I describe the development of a strategic plan for the care of young people aged 12 – 24 years with a chronic illness and/or disability in the former Sydney West Area Health Service and analyse my role with reference to the RACMA Core Competencies. The work has progressed during a major organisational change in the public hospital system in New South Wales, with the splitting of Sydney West Area Health Service into two Local Health Networks (later Districts) and the creation of the Sydney Children’s Hospital Network. I have worked under three different Chief Executives, with different Executive teams and in different organisational structures. The complexities of strategic planning across health services, with changing organisational structures and senior management are discussed.


Most young people in Australia are healthy, but some are affected by chronic illness and/or disability. With improvements in health care, the large majority of these young people now survive into adulthood. Transition has been described as ‘the purposeful movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health-care systems’ (1). Inadequate processes may result in young people being ‘lost in transition’ and not accessing necessary adult health services (2). Unsatisfactory transition processes have also been linked to increased morbidity and mortality in young patients (3), and reduced quality of life (4). As the number of young people with these complex health problems increases, health systems throughout the world need to adapt in order to provide effective transitions of care. There is limited evidence to guide the development of effective transition practices, although principles have been described (4, 5). The need for transition processes for young people with chronic illness and/or disability partly stems from the historical separation of children’s and adult services and training of health care professionals in the hospital setting.


a) Organisational context

Sydney West Area Health Service (SWAHS) was created at the start of 2005 from the amalgamation of two existing NSW Area Health Services and part of a third. Westmead Hospital had the predominant role in providing tertiary level services and was the only provider of quaternary level services in SWAHS. Clinical services were grouped into Clinical Networks which had broad-ranging functions, including both strategic planning and day to day operational roles across SWAHS. I was appointed to the position of Network Director, Aged and Chronic Care, with line management responsibility for 16 Clinical Departments across SWAHS. I reported through a Cluster Director to the Director of Clinical Operations, who in turn reported to the Chief Executive. My substantive clinical appointment was as a Visiting Medical Officer in General Medicine in Blacktown-Mt. Druitt Health.

Situated adjacent to Westmead Hospital was one of the two major children’s hospitals in Sydney, Children’s Hospital Westmead (CHW).

b) Young people with chronic illness and/or disability

During 2007-8, a number of requests were received by the Strategic Health Investment Planning Committee in SWAHS from specialist services at Westmead Hospital seeking funding to establish or enhance adult services to support the transition of young people from CHW. The inadequacy of access to, and resourcing of, adult services was recognised, as well as the importance of ensuring that transition was well planned.

In August 2008, the Executive of SWAHS endorsed a proposal to develop a strategic plan for the care of young people with a chronic illness and/or disability. A need for the development of sustainable services and care processes was noted. The key deliverables of the strategic plan were to be a model of care for the management of young people with chronic illness and/or disability, together with a summary of needs for service development that could be used as a basis for submissions to Government for funding as opportunities arose. The need for a collaborative approach with key stakeholders was noted. A Working Group was to be convened to develop the plan under the auspice of the Aged and Chronic Care Network with support from the Health Services Development Unit. The first steps were to be a scoping exercise and the development of terms of reference for the Working Group. Of note is the fact that a number of clinical services for which transition care was important (Diabetes and Endocrinology, Genetic Medicine, Neurology, Rehabilitation Medicine and Rheumatology) were part of the Aged and Chronic Care Network.

Developing the Strategic Plan

I was tasked with convening and chairing the Working Group which developed the strategic plan. Early work involved determining the membership of the group (me, the Aged and Chronic Care Network Manager, the Manager of the NSW Greater Metropolitan Clinician Taskforce (GMCT) Transition Network, a Health Planner, a Transition Coordinator employed by the GMCT, and a SWAHS management trainee), and the terms of reference, developing a work plan, and reviewing an epidemiological profile. A literature review was also undertaken. Meetings were usually held monthly. I participated in most of the detailed consultations with key clinical services in SWAHS and CHW which informed the planning process. I also helped formulate the strategic directions and recommendations (see below) evolving from the consultations and planning process, provided advice on the formatting of the plan and participated in editing the final draft. The Manager of the NSW GMCT Transition Network was a key informant on the viewpoint of young people and their carers. I also led consultation that was undertaken to inform the creation of a draft governance structure.

The Area Strategy for Young People with a Chronic Illness and/or Disability was developed during 2008-10. The document outlined a number of guiding principles for service delivery. Three key strategic directions were identified:
  • Establish a governance framework for the transition of young people with chronic illness and/or disability within SWAHS.
  • Employ an organisational systems approach to improving care.
  • Foster development of sustainable specialist services and appropriate care environments.
There were also two recommendations:
  • That an Area Strategic Committee should be formed to advance the development and delivery of health services for young people with chronic illness and/or disability.
  • That the existing Transition Committee at Westmead Hospital (an operational committee) should be aligned with the Area Strategic Committee.
A number of performance measures were suggested. The Chief Executive left SWAHS in May 2010 and a new Chief Executive was appointed. The SWAHS Executive remained unchanged. The strategic plan was endorsed by the SWAHS Executive in July 2010. An implementation plan and consumer engagement plan were later requested. The Area Strategy was launched in December 2010 at a forum co-hosted with the NSW Agency for Clinical Innovation (ACI [formerly GMCT]) Transition Care Network. The Chief Executives of both SWAHS and the NSW ACI addressed the forum, which included a presentation from a carer. I also spoke at the forum. A scheduled presentation from a young person was cancelled because of illness. An evaluation completed by attendees suggested that the forum had been a useful contribution to discussion about transition care.

A restructure of the public hospital system in NSW

At the beginning of 2011, under the terms of the National Health and Hospitals Network Agreement, there was a major reorganisation of the public hospital system in NSW. Sydney West Area Health Service was split into two Local Health Networks (Nepean Blue Mountains and Western Sydney), which were renamed Local Health Districts (LHDs) following a change of State government in March 2011. Westmead Hospital is situated in Western Sydney Local Health District (WSLHD). The outgoing Chief Executive of SWAHS indicated that she would include mention of the Area Strategy in the handover to the incoming management teams. New Chief Executives were appointed to each Local Health Network/District, as were Governing Boards. Children’s Hospital Westmead and Sydney Children’s Hospital were linked in the Sydney Children’s Hospital Network.

During 2011, the Executive team for each Local Health District was recruited. I recognised the need for a new executive sponsor for the work around transition care. Existing Clinical Networks across the two Local Health Districts were initially expected to undertake their usual functions, which for most Networks now focussed mainly on clinical strategy. Apart from some initial broad-ranging handover meetings, the first opportunity to highlight the significance of the Area Strategy was at a meeting involving the Chief Executive of WSLHD and Aged and Chronic Care Network Department Heads in November 2011. The Chief Executive indicated that this body of work would be part of the portfolio of the Executive Medical Director. I should add that the Area Strategy was of more significance to WSLHD, given the proximity of Westmead Hospital to CHW. I arranged a meeting with the Director of Clinical Operations for the Sydney Children’s Hospital Network in December 2011 to discuss transition care and local strategic planning.

Ongoing advocacy

I have continued to lead strategic planning around transition care in WSLHD. This has involved convening and chairing a multidisciplinary, cross organisation (including Medicare Local) Strategic Committee for Young People with Chronic Illness and/or a Disability (which met quarterly between May 2011 and November 2012), contributing to the development of terms of reference and a provisional work plan for this committee, participating in a related Working Group, and advocacy to the Executive Medical Director in WSLHD.

Meetings have also been held with the former General Manager of Westmead Hospital and key clinical staff, as well as representatives of the chronic disease management program for young people in NSW. Highlighted concerns have been ventilator dependent young people who may require long hospital admissions, first presentations of ill young people to the Westmead Emergency Department before transition, the lack of clearly defined transfer processes for young people to adult services, the lack of sharing of electronic medical records, and the need to clearly define the most appropriate care setting(s) for transitioning young people, depending at least partly on the complexity of their health care needs. A greater degree of engagement by clinicians between Westmead Hospital and CHW is needed. The different level of resourcing between children’s services and adult services has been noted. There is significant potential benefit from the chronic disease management program for young people in New South Wales. Recently (September 2013), a meeting was held involving me together with the Executive Medical Director for WSLHD, the Director of Clinical Operations for the Sydney Children’s Hospital Network and others in order to further define the future work required around transition care for young people. A scoping document is to be written, outlining the content of the discussion and identifying broadly the future work to be undertaken around transition care involving the two organisations. Transition care is currently being considered in the context of new clinical stream arrangements within WSLHD, with my anticipated ongoing role being that of a clinical advisor. Transition care is an agenda item for regular meetings between the Executives of WSLHD and Sydney Children’s Hospital Network.

The work around developing and improving transition processes is ongoing and far from complete. An evaluation strategy will also need to be developed.

Reflection and discussion

To effectively lead the development of the Area Strategy, I needed to significantly increase my knowledge of transition care. Initially, my knowledge of transition care for young people resulted from caring for a small number of young people with Type 1 diabetes, as part of my work as an adult physician. I needed to work across organisations during restructures and with a complete change of Executive staff in the organisation in which I work. My role as Network Director lapsed during 2012, though I have retained a senior medical advisory role within WSLHD, with one reporting line to the Executive Medical Director.

I was surprised at how long it took to develop the initial Area Strategy. This was partly because of the complexity of the preliminary work, but also because of the consultation which involved initially gaining the trust of a number of clinicians whom I had not met before. It was important to outline the background to each consultation beforehand. The potential challenges for clinicians who undertake managerial roles in dealing with clinician colleagues have been described (6). Finding a time suitable to all parties to meet was sometimes difficult.

Progressing work around transitional care in the organisational context has proven to be complex, because of changing staff and the need for the new organisation to develop work priorities. The potential for structural changes in the health system to have poorly defined benefits, whilst diverting clinicians and management from progressing clinical care and decision-making, have been described (7,8).

The work around transition care required a process of managing up (9) within WSLHD and also managing across to a different organisation (CHW, and more recently SCHN). The lack of certainty about my role as Network Director (and later discontinuation of this role) probably affected my confidence and effectiveness as an advocate. I probably overestimated the importance of formal authority and underestimated the importance of my informal networks in promoting change (10).

The lack of consumer involvement throughout the development of the Area Strategy and during the ongoing work represents one deficiency in the process. The GMCT Transition Network Manager had long-term involvement with young people and their parents/carers. She was able to bring important perspectives to the development of the Area Strategy and was able to identify the key weaknesses and consequences of the existing unstructured processes. Consumer involvement in the development of an implementation plan for the Area Strategy could prove invaluable.

Describing the difference between a strategic plan and an operational plan has been a regular requirement in discussions with clinicians about transition care for young people. Whilst no resources have been promised to support the development and expansion of services at Westmead Hospital, some are required currently and more will be required in future, especially for the minority of young people who have the most complex ongoing care needs. Managing expectations and emphasising the need for service and business plans underpinned by data has been part of discussions with clinicians. A further complexity has been a recent reorganisation of clinical services at Westmead Hospital into a directorate structure.

I have been fortunate in working with the same health planner and GMCT Transition Coordinator from the outset of this project. Most of the clinicians remain in their former roles, but a number of non-clinicians have left WSLHD.

The three strategic directions from the Area Strategy are very general but they remain current and consistent with the discussions held recently with the Executive about transition care. This consistency of theme suggests the identified overall approach is reasonable. What now needs to be developed, after several years delay, is an implementation plan. The work undertaken since the launch of the Area Strategy, including a recent situational audit, has kept the information about clinical services current.

For the longer term, an evaluation plan will need to be developed. This could incorporate a set of measures of process and outcomes - the set of performance measures identified in the Area Strategy provides a useful starting point, as these remain relevant:
  • Area transition policy implemented
  • Level of patient satisfaction (via consumer satisfaction surveys) – this could involve obtaining, for example, feedback about the patient experience of transition, and the views of patients as to whether transition processes improved their ability to manage their illness and other aspects of their lives such as education, work and relationships.
  • Health care in the right setting – no patients > 18 years at paediatric hospitals
  • Audit of discharge letters and transition plans
  • Existence of clinical pathways/management strategies for each chronic illness and disability
  • Decrease in patient complaints about care provided
  • No adverse outcomes for high risk patients
  • Reduction in unplanned admissions to paediatric or adult facilities
The next step, as identified above, is the development of a scoping paper including an outline of the background to the work around transition, a future work-plan, and an evaluation strategy.

RACMA Core Competencies and this management case

The specific competencies addressed in this case study are as follows

  • Develop rapport - I needed to develop rapport and trust with many clinicians whom I had never met before. I had previously worked with health planners and had reason to believe that they would be happy to work on this project. I had not previously worked with the GMCT Transition Manager.
  • Synthesize information - I knew very little about transition care initially and needed to inform myself of the key areas of concern.
  • Convey information - I led the development of the strategic plan with other Working Group members. There was a need to consider the various audiences, including clinicians, the community, area health service and hospital Executives, the GMCT (later the ACI), and the Department of Health. It was important that the language and content created a clear reference document.
  • Effective communication - At all stages of this work, communication has been important.
  • The launch by the Chief Executives of SWAHS and the Agency for Clinical Innovation of the Area Strategy was intended to highlight the importance of this work. The speakers and content at the launch were carefully chosen. As noted above, I was one of the speakers.
  • Identify community needs - The background information/data for the development of the Area Strategy was obtained through the Health Services Planning Unit in SWAHS, from GMCT, and through consultation with clinical services. There have been a number of situational audits undertaken.
  • Respond to health issues - Planning for transition care is a response to an identified and increasing health need in the community.
  • Application of new knowledge - Developing effective and sustainable models of transition care has proven to be a challenge worldwide. Identifying ways of addressing some of the problems requires a new local approach.
  • Evidence-based decision making - A literature review has identified some of the important contributors to effective transition processes, but has also indicated that no single model can be applied to all circumstances.
  • Reflective practice - I have had to consider carefully how to ensure the focus is on young people and their care. I have needed to consider how to engage clinicians whom I had never met before and how to maintain the narrative when there were distractions created mainly by restructuring in health. Ongoing work and advocacy has been required. I have needed a carefully considered approach to managing upwards.
  • Patient first behaviour - This body of work has as its basis the promotion of safe, effective and efficient care, in the most appropriate setting, for young people.
  • Facilitate consultation - I have consulted widely though, admittedly, not in a systematic way with young people and their parents/carers.
  • Build relationships - I have worked with a range of different people during this work and continue to do so.
  • Lead teams - I have lead this body of work from the start and continue to be a key local advocate and informant.
Medical expert
  • Strategy and design - I have played a significant role in the development of the Area
  • Strategy and the ongoing work.
  • Governance - I lead the early discussions about governance of transition care locally. I have had ongoing input into the iterative process of trying to define a governance structure which is likely to report through the Executive Medical Director in WSLHD to the Chief Executive.

Dr Michael Datyner

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2013 Jul – Aug; P.62-68

The Royal Australasian College of Medical Administrators
Dr Michael Datyner, , p
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