What are the best ways to ensure that people with Motor Neurone Disease (MND) receive essential palliative and end of life care transition to palliative care and when should a "just in case kit" be considered?

Record type Uncertainties identified from clinicians' questions
Source James Lind Alliance Palliative and end of life care Priority Setting Partnership
Why is there uncertainty? No relevant systematic reviews identified

Original Uncertainty

This uncertainty was identified from three bereaved carer's and three professionals' questions.

This is an indicative uncertainty and the following submissions were merged to form this one:
I feel it important to enable people with MND (for example) and other rarer and rapidly progressing conditions to gain access to palliaitive care as early as possible, long before the person is nearing the end of their life
People living with MND can deteriorate quickly, so judging when the 'just in case kit' should be considered can be tricky. When is the optimum time and who is the best professional to raise the matter with appropriate clinician?
Why is there no fast track system for putting in place support, equipment etc for people with rapidly progressing conditions such as bulbar onset MND?

References to reliable up-to-date systematic reviews:

None identified

What is needed? Systematic Reviews
Systematic reviews that need updating or extending None identified
Systematic reviews in preparation None identified
Ongoing controlled trials None identified


Which health conditions? Neurological conditions | Service delivery, organisation and staffing | Palliative and end of life care
What is person's age? Adult
Which types of treatments? Service delivery

Which Outcomes

Patient Satisfaction; health related quality of life; health related cost; timing of introduction of palliative care; quality of care

Record ID: Publication date:08 Sep 2015
Last reviewed date:08 Sep 2016 Publication Type:Known Uncertainty
The DUETs team endeavours to ensure that information is correct at the time of data entry