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P-140 Providing individual tailored support for patients with Motor Neurone Disease and their families: the impact of a new Key Worker role
  1. Jennifer A Kirton1,
  2. Katherine Knighting1,
  3. Barbara Jack1,
  4. Christopher Bennett2 and
  5. Christine Sutcliffe3
  1. 1Edgehill University, Liverpool, UK
  2. 2Motor Neurone Disease Association, UK
  3. 3Wirral Hospice St John’s, Bebington, UK


Background Motor Neurone Disease (MND) is a progressive terminal neurodegenerative condition, with six people diagnosed every day in the UK, resulting in around 5000 people being affected at any one time (MND Association (UK), 2011). Its rapid progression and deterioration means care needs to be carefully planned and targeted in a timely manner. Multidisciplinary team (MDT) involvement is known to be beneficial for people living with MND (Miller, Jackson, Kasarskis, et al., 2009. Neurology. 73:1218; O’Brien, Whitehead, Jack et al., 2011. Brit J Neurosci Nurs. 7:580). In the North West of England a consultation exercise with families and carers identified a significant need for improved targeted and timely support. To address this a dedicated key worker role was established to support patients and their families and to coordinate that support within the community multi-disciplinary team. Ethical approval was given by Edge Hill University Health-related Research Ethics Committee (ETH2021-0147).

Aim To explore the impact of the MND Key Worker on people with MND and their families.

Methods An evaluation design using a mixed-method approach to data collection was employed using semi-structured interviews, surveys and assessment of routinely collected data (including referrals and access of services). Data were collected from patients, families and key stakeholders who had experience of the new role over the first 15 months of the post.

Results Qualitative data are subject to thematic analysis and descriptive statistics are used to represent routinely collected data. Data from phase one and two of data collection (Interviews n=20, Survey n=24) show increased referrals and uptake of hospice services along with qualitative data demonstrating the positive impact of the role and key benefits experienced by people with MND and their families.

Conclusion Early data analysis indicates the introduction of a dedicated key worker post to be beneficial to people with MND and their families. This paper will discuss these results, (together with phase three data collected in summer 2022) and explore what elements of the role are having the maximum impact.

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