Delivering as a CCG

Motor Neurone Disease (MND) Co-Ordinator

Current Provision

The Motor Neurone Disease Care Co-ordinator provides home visits which include a holistic health, psychosocial and physical review.  The main emphasis being on MND symptom management control.

Case for change

There is duplication with services provided in the community along with the opportunity to provide improved care through the core community services.  Moving the service out of the acute setting allows for improved integration of care and as a result a greater emphasis on patient outcomes.

It is expected that the patient experience will improve through integration of services.  Removing duplication will provide value for money.  Services will still be provided in the patient’s home where needed.


CCGs will ensure the re-commissioning of these services to maintain the current principles of crisis management, rehabilitation, self-management.   The following care is provided under the existing service and will continue with the new service:

  • Assessment of oxygen saturation levels
  • Swallow assessment
  • Nutrition assessment
  • Activities of daily living assessment
  • Discussion regarding Do Not Resuscitate
  • Discuss advance decision to refuse treatment (and put this in place)
  • Facilitate end of life care with community teams and GP
  • Discuss preferred place of care and death

The existing service is provided in a patient’s home and that will continue, along with care co-ordination across other relevant community services.

Links with the acute neurology team will remain, and a strong Multi Disciplinary Team (MDT) approach will be a focus.

Tell us what you think

The engagement period for this service review has now ended.  For an update on the decisions on services, click here.


If you would like a paper copy of the You-said-we-did Summary,  please call 0800 028 3693 (option 2)

For further comments, please send your comments to the Patient Experience Team on or write to:


Patient Experience Team

South Nottinghamshire CCGs

Civic Centre

Arnot Hill Park




If you would like a paper copy of the You-said-we-did summary please call 0800 028 3693 (option 2)


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