[Skip to content]

Help the Hospices
Search our Site
In this section
Governance Policy
Did you know... More than 100,000 people volunteer in hospices across the UK

The need for better coordination of care

Motor neurone disease is a life limiting progressive neurodegenerative disorder, presenting complex physical, social and psychological problems.
Due to the devastating symptoms and speed of progression of MND, each person living with it requires rapid multidisciplinary assessment and provision of care from a large number of providers across primary and secondary care involving health, social and voluntary sectors.

Coordinating this care presents a major challenge to ensure that their needs are met in a timely fashion.

Finding out the need

Although there were pockets of excellent care in Leicester and Rutland, it was discovered that generally a fragmented approach was more usual and the system was failing patients in certain areas. A mapping day was held to identify:
  • what worked well
  • where problems occurred
  • any ideas for solutions to these problems.

Over 40 people attended and included representatives from:
  • primary and secondary care
  • people with MND and their carers
  • social services
  • specialist services such as dietetics, speech and language therapy
  • the community and voluntary sector.

Addressing the need

From this day it was apparent that this was a much larger piece of work than initially anticipated.

At this point a successful application for a St James’s Place Foundation care beyond cancer grant was made to appoint Benny Rossi, a nurse by background, for 12 months to drive the project forward.

Learn more about what Benny and the team did to improve the quality of care for people with MND and their carers.