7 keys for navigating a life changing diagnosis

Workshop overview

Are you or someone you care for navigating a life-changing illness? This series of  workshops offer practical guidance and actionable steps based on the best-selling book Hope for the Best, Plan for the Rest: 7 Keys for Navigating a Life-Changing Diagnosis.

Led by experts, the workshop will enable you to learn about the 7 keys so you have more choice and control over a life changing diagnosis.

Why these workshops are important

We know from evidence that people facing a life changing illness and those caring for them can feel it is difficult to navigate the healthcare system. Too often people feel in the dark, not knowing how to navigate the complex health care system or what questions to ask.

  • “Fewer than half of respondents said the person who died had a key contact person to co- ordinate their care. This meant that much of the responsibility of care fell to family and friends, often with little support”

    Marie Curie: Time to care

  • “…family members commonly spend precious time struggling to access, navigate and manage different services, which adds to the burden of an already distressing situation.”

    Marie Curie: Time to care

  • “[I] felt left on [my] own, all responsibility on myself for food, medication, appointments, care, liaising with many different people and services. No single point of contact – many different people dipped in and out but not one person coordinating assistance.”

    Marie Curie: Time to care

    • Take Control: Advocate for themselves and make their illness journey more personalised.

    • Communicate Better: Express priorities clearly and ask meaningful questions to health care providers.

    • Use the Seven Keys: Apply practical steps to improve their illness experience.

    • Plan Collaboratively: Strengthen relationships with family, carers, and health and social care teams.

    • Stay Hopeful: Balance planning for the future with maintaining hope.

  • The workshops are designed for anyone who is living with, or caring for, someone with a life changing diagnosis.

  • The 7 keys are the foundation of all workshops. Depending on workshop delivered, content will include all or part of the 7 keys.

    The 7 keys to navigating a life changing illness

    1. Walk Two Roads
      Balance staying positive while also seeking honest, accurate information. This helps you stay hopeful and grounded in reality.

    2. Zoom Out
      Every illness has a known pattern to it. Understanding this storyline gives you a birds-eye and long view of where you are at in your illness.

    3. Know your style
      Your unique way of being will have as much impact on your illness experience as the illness itself. Harness information about your style to gain more control.

    4. Customize your Order
      Ideally you want to tailor your care to match your values. Share what’s important to you to ensure that your care matches who you are as a unique person.

    5. Anticipate Ripple Effects
      Your inner crew (e.g. family and caregivers) will have a parallel illness journey. Their lives will be affected in multiple ways.

    6. Connect the dots
      You and your inner crew need to play a central role in co-ordinating information. This enhances continuity and safety, especially at transition points.

    7. Invite yourself in
      Initiate conversations with your healthcare team. Don’t assume no news is good news. Passive, polite patients are encouraged to be respectfully assertive.

    The 7 keys to navigating a life changing illness workshop can be held in person or on-line. Attendees will receive the workbook to guide and record actionable steps.

  • Coming soon

  • Facilitators: Clare Fuller & Dani Ayre
    Leaders in Advance Care Planning Education

    Clare Fuller and Dani Ayre bring a powerful blend of clinical expertise, national influence, and educational leadership to their work in Palliative and End-of-Life Care (PEoLC) and Advance Care Planning (ACP). With decades of combined experience, they are passionate advocates for Advance Care Planning.

    Together, Clare and Dani co-founded the National Advance Care Planning Conference and Awareness Day, in collaboration with James Norris of MyWishes and the Digital Legacy Association. The inaugural 2024 event attracted over 300 attendees and was streamed globally. Following the conference, they led a UK-wide tour alongside bestselling authors Dr. Hsien Seow and Dr. Sammy Winemaker to promote 7 Keys to Navigating a Life Changing Illness.

     

    Clare Fuller is a Registered Nurse with over 30 years of experience across hospice, community, and acute care settings. She has served as a Consultant Nurse for the Gold Standards Framework and CQC Specialist Advisor. Clare is also a Lasting Power of Attorney Consultant and currently sits as a Commissioner for the Parliamentary Commission on Palliative and End of Life Care. As Director of Speak for Me, she delivers national education and consultancy services on Advance Care Planning and hosts the Conversations about Advance Care Planning podcast.

    Dani Ayre is the Matron and Lead Nurse for Palliative Care at Norfolk and Norwich University Hospital, with over 15 years of clinical experience. She previously led a Hospice Outreach Service in Gibraltar and has worked across community, long-term conditions, and acute care. Dani holds a Postgraduate Certificate with Distinction in Palliative Medicine and additional Master's-level training in leadership and education. She is a dedicated educator and advocate for high-quality, person-centred care planning.

    Together, Clare and Dani offer a dynamic, grounded, and compassionate approach to Advance Care Planning education—equipping professionals and communities alike with the tools to navigate the most important conversations of life.

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