People living with ALS/MND tell the diagnosis story : what happened before they knew

Background: Being told that one has a life threatening disease is shattering, but for some people it comes as a relief, following as it does the years of uncertainty and traumatic experiences that lead to diagnosis. The need to debrief the experience is paramount before the story of living with the disease can be told.
Objectives: The purpose of this paper is to describe the extended and often demoralising process of diagnosis for people with ALS/MND.
Methods: Grounded theory methodology was used to explore the life and world of people diagnosed and living with ALS/MND. Data were collected via in-depth interviews with 25 people with the disease, their stories and photographs, poems and books they identified as important, and field notes. The textual data were analysed using constant comparative analysis. All people who volunteered were included in the study. Many participants with communication challenges worked with the researcher to tell their stories.
Results: Participants recounted the processes they experienced prior to the time when they were finally given a reason for the perplexing behaviour of their bodies. The diagnosis story was revealed as a sequence of: ‘recognizing a problem’, ‘seeking medical help’, ‘being on the diagnostic roundabout’, ‘confirming ALS/MND’, ‘reevaluating life and the future’, then ‘living with ALS/MND’. Consequences included a loss of trust in the competence of the health care system, which had implications for seeking help later when living with the disease.
Discussion: Participant distress seemed to have more in common with the stress linked to post-traumatic stress disorder (PTSD). Participants continued to relive the diagnosis experience in their dreams and daily lives many months after diagnosis, which impacted negatively on their well-being. For this group of people, the diagnostic process itself was the traumatic stressor. It seemed that telling their stories gave them the opportunity to debrief and have their words recorded. Debrief support is recommended whenthe ALS/MND diagnosis is finalized, and continued, to prevent long-term reliving of the diagnostic process.
Conclusion: Health professionals continue to address the issues around the process of giving the ‘bad news’ of ALS/MND. This ‘diagnosis story’ may provide additional guidance in addressing the process so as to limit potential harm and promote well-being for people with the disease and their families.

An evidence-based approach to podiatry workforce enhancement and service provision in Western Victoria

Aims & rationale/Objectives : The objectives of this workforce and service enhancement project include: (i) establishing the magnitude of podiatry needs; and (ii) developing a model that can be used to enhance podiatry workforce and podiatry services.
Methods : Surveys to podiatrists and health agencies to determine vacancies, waiting lists, work practices and recruitment methods. Desktop analysis of predictive data for burden of disease and population changes per local government area (LGA). Meetings with podiatrists and their professional association, health care agencies, universities, and Local and State Governments.
Principal findings : Results showed
Long podiatry waiting lists (up to 12 months)
Podiatry vacancies and service gaps
Absence of qualified foot assistants
A high chronic disease burden
A population age mix that is predicted to change dramatically over the next 25 years in favour of those who are 60 years of age or older
Ineffective recruitment methods
The workforce enhancement model that emanated from the meetings with the steering group includes podiatrists as well as auxiliaries such as foot-care assistants who work together in an interprofessional model of care that expands across the region. In addition to training foot-care assistants and the development of a podiatry teaching clinic to enhance student placement, the model builds onto a current continuous professional development program for allied health professionals.
Discussion : Although the allied health workforce (including podiatry) is playing an increasingly important role in the prevention and treatment of chronic diseases, rural areas in particular are disadvantaged by recruitment and retention problems. The podiatry workforce shortage is compounded by ageing populations. Age is associated with increased podiatry usage due to chronic diseases such as diabetes, cardiovascular disease and osteoarthritis.
Implications : A strategic plan developed in consultation with stakeholders aims to improve rural podiatry services in a sustainable manner. The project will be implemented when adequate funding is allocated this year and will be evaluated on its impact on services.
Presentation type : Paper