Holding Hope Q&A

Yes. It is important to note that the purpose of the launch was to introduce the Holding Hope Guide and its Workbooks. The Guide has been shaped over many years by the narratives, reflections, and deeply considered insights shared by people with lived and living experience, families and carers, clinicians, and researchers. Their perspectives underpin the values, structure, and practical tools throughout the Guide and the accompanying workbooks. Although not every group could be represented verbally on the panel, the voices of consumers, carers, family and kin are woven throughout the document. 

In planning the panel, we explored the option of including a consumer representative with direct lived experience of longstanding illness. Unfortunately, they were unable to take part due to an unexpected hospital admission during the launch period. Lived experience was still represented through both the Guide Author and the Project Lead. The author’s lived experience spans almost three decades of living with and recovering from a longstanding eating disorder, and the project lead also brings lived experience. While this does not replace the value of additional voices, it does mean that lived experience was embedded throughout both the development and presentation of the Guide. 

Ongoing implementation activities will continue to centre diverse lived experiences and carer, family, and kin voices, including opportunities for broader representation as this work progresses nationally.

Absolutely. Accessibility and cognitive load were central considerations in developing both the Guide and the workbooks. The content has been intentionally structured into short sections, clear headings, optional worksheets, and step-by-step tools. Many components can be used in small doses, and the workbooks are designed so people can dip in and out according to their capacity on any given day. 

The language is kept clear and non-technical, key ideas are repeated gently across sections to support recall, and reflective exercises are optional rather than required. Visual organisation, whitespace, and consistent formatting also help reduce overwhelm. 

The intention is to support flexible, compassionate engagement to ensure that people can use the materials in a way that feels manageable and safe for them. 

Yes. Neurodivergence is acknowledged throughout the Guide and the workbooks, including the ways it can shape communication preferences, decision-making, sensory needs, and engagement with services. Several of our reviewers brought not only lived experience but also a sophisticated understanding of neurodivergence, which helped ensure that these considerations were integrated thoughtfully and practically. 

The Workbook for People with Lived/Living Experience includes optional approaches, alternative formats for reflection, and encourages individuals to adapt the tools to their preferred way of thinking or processing. The aim is to support autonomy and comfort, recognising that people may engage differently depending on cognitive style, sensory needs, and capacity on any given day. 

Education must be grounded in humility, co-design, and reflective practice. Clinicians need support to navigate uncertainty, ethical tension, and the fear of ‘doing the wrong thing,’ particularly when someone has not benefited from evidence-based treatment. The Guide provides practical tools that prompt collaborative planning, transparent communication about risk, and shared responsibility across teams, helping move care beyond language and into consistent, tangible practice. 

Importantly, this work does not sit with clinicians alone. Services and organisations also have a responsibility to create the conditions for collaboration by investing in training, reflective supervision, consistent governance, and leadership that values person-centred care over rigid adherence to a single model. Lived experience partnership is essential in shaping these practices and ensuring they remain grounded in real-world needs. 

Embedding this approach requires ongoing commitment, not a one-off training. When organisations support staff with the right frameworks, time, and culture, principles such as dignity, autonomy, harm reduction, and relational safety are far more likely to be enacted rather than simply spoken about. 

Holding Hope is not to give greater voice to the eating disorder but to protect and elevate the voice of the person, particularly in moments when the illness makes it difficult for them to express their own values, preferences, and identity. 

For many people with longstanding eating disorders, decision-making capacity fluctuates. At times it can be hard to distinguish what comes from the person and what is driven by the illness. For this reason, the Guide emphasises that decisions about adaptive pathways should never be made by a single clinician or from a single perspective. 

Different people see different parts of the picture. Individuals may express themselves differently with a peer worker, a carer, a GP, or a clinician. Shared deliberation and collective responsibility are safeguards. They help ensure decisions are informed by a broad understanding of the person and reduce the risk of mistaking the illness for the self. 

The Guide also supports teams to explore the source of distress or resistance. Distress can arise from trauma, treatment fear, overwhelm, or the eating disorder itself. Each of these requires a different response. Trauma-informed reflection and values-based dialogue help clarify what the person is experiencing and what care approach aligns with their needs. 

Care coordination is another key safeguard. Coordinated processes bring together diverse perspectives and ensure decisions reflect the person’s history, priorities, and safety needs rather than the illness. 

Ultimately, the Guide is not prescriptive about the outcome. It is prescriptive about the process. When decisions are made through a principled, reflective, and collaborative process that centres dignity and humanity, an adaptive pathway does not amplify the eating disorder. It honours the person and supports care that remains ethically grounded and coherent. 

Carers hold an essential part of the person’s story, and the resource is designed to help them engage in ways that are constructive, supportive, and sustainable. 

First, the resource helps carers understand the principles behind adaptive or alternative pathways. Many carers experience uncertainty or fear when treatment changes direction. The Guide explains why certain decisions are made, what they are based on, and how they align with person-centred and trauma-informed care. 

Second, the resource offers carers a structured way to contribute their knowledge. Carers often recognise patterns, concerns, and historical information that may not be visible in clinical settings. The Guide supports them to share these insights clearly and safely so that they strengthen rather than complicate decision-making. 

Third, the resource helps carers communicate with treating teams. The reflective questions, values prompts, and planning tools can be used in meetings or conversations to support alignment, reduce misunderstanding, and anchor discussions in what matters to the person. 

Fourth, the resource provides clarity around roles. Carers often carry a heavy emotional burden. The Guide reinforces that major care decisions arise from shared responsibility, not from carers acting alone, and that their role is to contribute insight rather than feel responsible for clinical outcomes. 

Finally, the resource supports carer wellbeing. It acknowledges the emotional labour involved in supporting someone with a longstanding eating disorder. It offers language and frameworks that help carers stay connected to the person while also recognising their own limits and needs. 

In essence, carers can use the resource as a practical guide, a communication tool, and a source of reassurance. It helps them participate in care in an informed, aligned, and sustainable way, while continuing to hold meaningful hope for the person they support. 

Complementary medicine can have a place within a collaborative approach to care when it is integrated safely and transparently alongside mainstream treatment. For some people with longstanding eating disorders, modalities such as naturopathy, gentle movement practices, or mind-body approaches may offer comfort, support symptom management, or contribute to a sense of well-being when used appropriately. 

Any inclusion of complementary therapies must sit within a clearly coordinated plan led by qualified health professionals, with close attention to medical risk, interactions with prescribed treatment, and the individual’s goals, values, and capacity. The Holding Hope Discussion Paper emphasises the importance of person-centred and dignity-led care, where individuals are supported to explore options that feel meaningful to them, provided these do not compromise safety or clinical oversight. 

In this context, complementary approaches may be used to enhance quality of life or provide supportive benefits, but they are not substitutes for evidence-based medical and psychological care. Their role is best understood as part of a broader, integrated, and ethically guided model of care tailored to the individual’s needs and circumstances. The Holding Hope Guide reinforces this by encouraging teams to document complementary approaches within shared care plans and to review them regularly as part of ongoing monitoring. 

Harm reduction and palliative care share a commitment to reducing suffering and supporting quality of life, but they serve distinct purposes and occupy distinct places within care planning. 

Harm reduction focuses on reducing the negative health, psychological, and functional impacts of an eating disorder when full symptom interruption is not immediately possible or when treatment attempts have stalled. Strategies may include medical monitoring, nutritional stabilisation, minimising risk-taking behaviours, and supporting daily functioning. The aim is to enhance safety and preserve quality of life while maintaining engagement and the possibility of further treatment. 

Palliative care is a broader, multidisciplinary approach that attends to the physical, emotional, social, and spiritual dimensions of a person’s wellbeing, particularly when the illness has become life-limiting and traditional recovery-oriented approaches are no longer beneficial or desired. Palliative care prioritises comfort, dignity, and alignment with the person’s values and goals. It does not require a person to be at the end of life. Rather, it recognises when recovery is not the primary focus and a different orientation to care is required. 

These approaches may intersect, but they are not interchangeable. Harm reduction can occur at any stage of illness. Palliative care represents a comprehensive shift toward supporting quality of life across multiple domains. Clear, collaborative conversations and ethical reflection are essential to determining which approach is appropriate at any point in time. Both the Holding Hope Discussion Paper and the Holding Hope Guide provide language and tools to help teams distinguish, document, and communicate which approach is being taken and why. 

The National Disability Insurance Scheme (NDIS) can play a role for some people with longstanding eating disorders, particularly when the illness has resulted in significant and enduring functional impairment. Eligibility is based not on diagnosis but on the degree to which the eating disorder affects daily living, independence, physical functioning, and psychosocial participation. 

For those who meet access requirements, the NDIS may fund supports related to daily activities, community participation, capacity-building, and psychosocial recovery. These supports can complement but do not replace medical or psychological treatment, which remains part of the health system. 

Access is inconsistent and can be complex to navigate. The Holding Hope Discussion Paper highlights the need for clearer pathways and cross-sector collaboration to ensure individuals are not left to manage fragmented systems alone. The Holding Hope Guide recommends explicitly mapping NDIS-funded supports into shared care plans to ensure roles, communication pathways, and responsibilities are clear. 

Accessing appropriate care when a palliative care approach is recommended is challenging. Many acute and specialist eating disorder services are built around recovery-only models and may not be equipped to support people whose needs sit outside these pathways. This gap is highlighted in the Holding Hope Discussion Paper. 

In practice, care may come from a combination of community providers, clinicians experienced in longstanding eating disorders, multidisciplinary teams, and specialist palliative care services. Early engagement with palliative care teams can provide home-based support, symptom management, psychosocial and spiritual care, and coordinated planning. Some individuals may also access community hospice programs or dedicated palliative units, though availability varies significantly by region. 

This inconsistency highlights the need for system reform, shared responsibility, and improved cross-sector collaboration. When mental health, physical health, and palliative care providers work together, and when care is aligned with the person’s values and goals, it becomes possible to offer compassionate, comprehensive support. 

The Holding Hope Guide adds practical tools for care coordination, role clarification, advance care planning, and transition planning, which can strengthen these pathways even when service access is limited. 

This statement reframes the issue of “non-response” by shifting focus from the individual to the suitability and effectiveness of interventions offered. For many people with longstanding eating disorders, traditional treatment models were not designed with their needs or illness trajectories in mind. 

When evidence-based treatments do not lead to meaningful improvement, it indicates that the model may not fit the person’s context, rather than a failure on their part. This invites clinicians and services to reflect on accessibility, timing, relational safety, and whether the care offered genuinely aligns with the person’s needs. 

A person-centred, flexible, dignity-led approach allows for broader definitions of progress and supports wellbeing beyond symptom reduction. Both the Holding Hope Discussion Paper and Guide encourage services to examine their models, structures, and assumptions through this lens. 

The full Holding Hope: Exploring Compassionate and Holistic Care Pathways for Longstanding Eating Disorders Discussion Paper is available through the National Eating Disorders Collaboration (NEDC). It can be downloaded from the NEDC Holding Hope webpage. The Holding Hope Guide and associated Workbooks will also be available from the same page as they are released. 

If you have difficulty locating the document, NEDC can assist directly. 

The Holding Hope Discussion Paper does not prescribe or endorse specific treatment models. Instead, it advocates for a system flexible enough to consider a broader range of options when standard pathways have proven ineffective. 

A central message in the paper is that people with longstanding eating disorders often encounter treatment systems that are rigid, limited, or built on assumptions of universal applicability. By promoting ethically reflective, collaborative, person-centred care, Holding Hope creates space for clinicians and services to explore emerging, adapted, or innovative approaches safely and transparently. 

Innovation is not about replacing evidence-based practice. It is about acknowledging its limitations for some individuals and remaining open to evolving models, tailored approaches, and new evidence. The Holding Hope Guide supports this process by offering structured tools for shared decision-making, risk-benefit reflection, and the documentation of time-limited therapeutic trials. 

These ethical tensions are real, complex, and deeply felt. The Holding Hope Discussion Paper acknowledges that moving beyond a purely recovery-focused model requires careful ethical reasoning and transparent decision-making (pp. 31 to 33).

Duty of care involves more than prolonging life. It includes reducing suffering, upholding dignity, maintaining therapeutic trust, and preventing disproportionate harm. When repeated recovery-oriented interventions fail to produce benefits, persisting with the same approach can increase distress and undermine engagement. 

Respecting agency does not mean abandoning clinical responsibility. It involves: 

The Holding Hope Guide provides structured tools for ethical reflection, collaborative planning, capacity considerations, and balancing autonomy with safety. Shifting orientation is not a reduction in care. It is a recalibration toward ethically defensible, person-centred care aligned with the individual’s lived reality.

Capacity is not static. It can fluctuate with stress, trauma, nutrition, or medical instability. Assessment is not a technical exercise but a relational process requiring clear communication, trust, and support. 

The Holding Hope Guide offers tools and prompts to help teams navigate capacity in an ethical, transparent, and person-centred way. It supports teams to avoid defaulting either to over-intervention or withdrawal of care. 

Care access varies widely across Australia, and WA faces specific challenges due to workforce shortages and limited specialist services. The Discussion Paper stresses that palliative care should not become a default option simply because other models are unavailable (pp. 34 to 35). 

When considering a palliative or quality-of-life approach, the starting point remains mainstream health and mental health services. This includes: 

If a palliative care pathway becomes appropriate, it should be undertaken collaboratively with the treating team, the person, and supporters. Access to home-based palliative care, symptom management, and psychosocial support varies but can be integrated where available. 

The Holding Hope Guide provides tools for care coordination across fragmented systems, enabling teams to offer person-centred care even when services are difficult to access. 

Engaging the broader public mental health workforce requires building shared understanding and shared language, not only raising awareness. Integrating the Holding Hope Discussion Paper and Guide into existing education, supervision, and governance structures is a practical starting point. 

Opportunities include: 

People can contribute meaningfully by engaging with NEDC and other organisations involved in consultation and system reform. Professional networks, conferences, workshops, and communities of practice provide opportunities for lived experience, clinicians, and supporters to shape future directions. 

Sharing insights, experience-based knowledge, and observations from practice is essential to shaping policy and service development. The Holding Hope Guide and Workbooks support this by providing shared frameworks that can be used across settings and roles. 

Workforce uptake requires cultural change, education, supervision, leadership support, and opportunities for teams to engage with complexity in safe environments. 

The Holding Hope work aims to support this transition by offering a clear rationale and practical tools that can be adapted to local contexts. Implementation is gradual and requires responsibility from lived experience, clinical, managerial, and policy stakeholders. Over time, this shared commitment builds confidence, capability, and consistency across the workforce. 

The Holding Hope Guide and Workbooks are designed as practical resources that can be integrated into supervision, training, clinical governance, and organisational development.