Article Text

Download PDFPDF

P-174 The development of an MND co-ordinator role an evaluation of the first year
  1. Amanda Whitman and
  2. Lisa Pyrgoudes
  1. Farleigh Hospice, Chelmsford, UK


The development of an MND co-ordinator role, an evaluation of the first year, the impact of the role for patients, carers and the extended multidisciplinary team.

Motor Neurone Disease (MND) is a rare neurological condition that is always fatal. It is a devastating and cruel illness, which affects seven in 100,000 people, for which there is no effective treatment. The quality of life of people living with MND can be dramatically improved through an effective model of co-ordinated care.

Farleigh is one of a handful of hospices in the UK to have a dedicated MND professional. This unique role was created to coordinate care and provide support within the community for those affected by MND within Mid Essex.

  • The post–holder started October 2017, introducing patients early to the palliative MDT

  • Providing a single point of contact within the community from diagnosis

  • Working with patients, carers and health providers ensuring the needs for equipment, adaptations, therapy, information and support are met in a timely, cost efficient and effective way

  • Patients and their families supported whilst navigating a vast array of health and social care services

  • Peer support gym group for patients and carers

  • Partnership working within local Hospital Trust, Regional MND Care and Research Centre, community based health and social care professionals and charitable organisations including the MND Association.

In 2016/17 there were 330 bed days attributed to those with MND in the local Acute Trust (approximately 25 patients). If we assume that the bed day cost on average is £400, then the total cost for the number of bed days occupied by MND patients in 2016/17 in Mid Essex was around £132,000. A key function of the role is to reduce reliance on secondary care input helping patients feel confident to remain in their own homes where appropriate.

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.