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P-37 Legacy in action – using a legacy donation to improve support services for people with motor neurone disease across wirral and ellesmere port
  1. Christine Sutcliffe1,
  2. Christopher Bennett2,
  3. Paula Sutton3,
  4. Debbie Williams Williams4,
  5. Liz Steare1 and
  6. Tracey Thompson2
  1. 1Wirral Hospice St John’s, Bebington, UK
  2. 2Motor Neurone Disease Association, UK
  3. 3Motor Neurone Disease Association, UK
  4. 4Motor Neurone Disease Association – Wirral Branch, UK


Background A legacy was received by the Wirral Branch of the Motor Neurone Disease Association to improve the experience of people with Motor Neurone Disease (pwMND) on Wirral. Challenges faced by pwMND are identified in the 2019 Motor Neurone Disease Association survey. As 50% of pwMND die within 2-3 years of developing symptoms (NHS Inform. Motor neurone disease [Internet]), the association approached Wirral Hospice St John’s (WHSJ) to explore partnership working.

Aim To develop a needs based service to improve the care and support experienced by pwMND and their close social networks in Wirral and Ellesmere Port.

Method Focus groups facilitated by the Motor Neurone Disease Association with pwMND and their social care networks to identify areas for improvement. Review of the findings by the Wirral MND Association and Wirral Hospice St John’s to develop a service model. Scoping identified in 3 years the hospice had supported 30 pwMND, approximately 50% of cases on Wirral.

Results Focus groups identified gaps:

  • Support with understanding the condition and navigating care services.

  • Psychological support from diagnosis to bereavement.

  • Awareness of the condition amongst health and social care professionals.

  • Poor coordination of services.

A two-year pilot project was funded by the legacy and delivered by Wirral Hospice St John’s:

  • A 15 hour MND key worker role.

  • ½ day per week counselling service.

  • Access to hospice bereavement service.

  • Commissioning of an external evaluation to measure the impact and support further funding.

Conclusion Year 1. Key Worker has supported 40 people with Motor Neurone Disease, 8 people have accessed counselling, reduced time from diagnosis to support. There has been an increase in people with Motor Neurone Disease accessing a range of hospice services and completing advance care planning. Seven people with Motor Neurone Disease have died whilst being supported. The Keyworker chairs and coordinates regular meetings of health and social care professionals and has engaged in advocacy and education within the local teaching hospital. Referral pathways between the Wirral MND Association and the Key Worker to enable effective referrals and coordinated support.

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