RT Journal Article
SR Electronic
T1 P-37 Legacy in action – using a legacy donation to improve support services for people with motor neurone disease across wirral and ellesmere port
JF BMJ Supportive & Palliative Care
JO BMJ Support Palliat Care
FD British Medical Journal Publishing Group
SP A24
OP A24
DO 10.1136/spcare-2022-HUNC.59
VO 12
IS Suppl 3
A1 Sutcliffe, Christine
A1 Bennett, Christopher
A1 Sutton, Paula
A1 Williams, Debbie Williams
A1 Steare, Liz
A1 Thompson, Tracey
YR 2022
UL http://spcare.bmj.com/content/12/Suppl_3/A24.2.abstract
AB 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.