Initiation of NIV
Factors influencing the timing of referral and initiation
Timely referral and initiation of NIV is important.
Our research identified a large number of barriers which cause delays and difficulties initiating patients in a timely manner. We also identified things that enable a good service.
First, have a think about what issues you experience in your own service and what things work well. Then take a look at some of the factors we identified in the research before moving on.
What factors can you think of that influence the timing of referral or initiation of NIV in your service?
How might you overcome some of the barriers preventing early referral or initiation of NIV?
There are a range of patient, carer and service related factors to consider. Click on the following questions to explore these.
What are the patient-related barriers that impact upon timely initiation of NIV?
Patients/family being unwilling to discuss deterioration
Anxiety around prognosis or NIV use
Lack of understand about the need for NIV or its benefits
Rapid or slow disease progression
Uncertainty about the benefits, particularly in people with bulbar dysfunction, older age or with cognitive impairment
Difficulty attending appointments
What are the carer-related barriers that impact upon timely initiation of NIV?
Lack of carer support
Burden on carers
What are the service-related barriers that impact upon timely initiation of NIV?
Lack of staff
Lack of appointments
Lack of sufficient equipment
Lack of inpatient facilities
Lack of appropriate rooms
Number of referrals
Workload and time constraints
Demands from other disease areas
Commissioning of services
Professional’s choice to wait for advanced symptoms
Our research identified many ways in which these barriers can be addressed. Go through the questions below to get ideas for your service.
What can help address the patient-related barriers?
Early discussions about the impact of respiratory function on symptoms and survival.
Involving all members in the MDT in discussions including community team, palliative care and psychology and reinforcing key messages.
Shared and informed decision making.
Information/decisions aids such as leaflets, MyBreathing website.
Providing enough information about the benefits, drawbacks and practicalities about NIV as well as the alternative options.
Some patients wish to know information about their respiratory function and how it has declined in order to make a decision. They may also wish to know about the available evidence for NIV.
Video and telephone consultations may be acceptable to many people, particularly if coming to clinic is very difficult.
What can help can address the carer-related barriers?
Information and decisions aids such as leaflets, MyBreathing website.
Early referral for social care and carers’ assessment and information about respite care.
What can help address the service-related barriers?
Involvement of respiratory team at diagnosis/joint service
Access to local support with knowledge about NIV
Good MDT working relationships
Appropriate timing of testing, screening, referral and diagnosis
Frequency of monitoring
Early referral to allow planning
Staff understanding about respiratory failure
Assessing symptomatic patient irrespective of test results
Effective respiratory screening
Developing a good rapport with patients
Having protected and designated time for patients with MND
Access to outpatient or day case initiation for most cases
Access to inpatient initiation for complex cases
Access and ability to see and initiate patients in a variety of settings
Pathways or guidance, training and education