Ventilator support at home: NIV, the team around it, and what a carer can do

The MND Association's information sheet on ventilation describes both kinds plainly. NIV boosts the flow of ordinary air into the lungs through a mask, and it is the most common form of ventilation for people with motor neurone disease. Ventilation through a tracheostomy, which some teams call invasive ventilation, sends air through a tube into the windpipe. The Hull home ventilation leaflet for carers adds that NIV is not the same as CPAP, the machine many people use for sleep apnoea.

People come to need NIV for different reasons. When the muscles used for breathing weaken, or breathing becomes shallow during sleep, carbon dioxide can build up in the blood, and the Hull leaflet lists daytime tiredness, disturbed sleep, a lack of energy and morning headaches among the signs. NICE guideline NG42 recommends NIV for people with motor neurone disease whose breathing is affected, and care at home with MND covers where it sits in the wider picture. The NHS lists a machine to help with breathing among the treatments for muscular dystrophy where the condition affects the lungs. NICE guideline NG115 on COPD asks for some people with COPD to be referred to a specialist centre to be considered for long-term NIV, and COPD and oxygen at home covers the rest of that condition. North Tees and Hartlepool's NIV leaflet notes that the lungs may struggle when somebody is overweight, and that for some of these people the team considers a machine to use every night at home. This is sometimes called obesity hypoventilation.

If your relative has a tracheostomy, tracheostomy care at home covers the tube, suction and the emergency plan, and you should read it first. The rest of this page is written mainly for the mask.

NICE sets out what should happen before NIV starts for somebody with motor neurone disease. The guideline is written for that condition, but its list makes a useful set of questions whatever the reason for the machine. The team assesses the risks with the person and the family, including a ventilator failing, the power supply and battery back-up, and whether carers are available. Then it prepares a care plan, and the family should be offered a copy. NICE says it should cover the reviews, how the machine is maintained, round-the-clock emergency clinical and technical support, and training for the person, the family and carers. It also asks for families and carers to be assessed on whether they are able and willing to help with the ventilation, and on what training they need.

NICE also says NIV is usually started at night after the person has had time to get used to it during the day, and that the hours are built up as needed. The MND Association adds that the mask and settings are usually adjusted at an outpatient clinic, and that some machines can be adjusted remotely by the team.

Ofgem's page on the Priority Services Register lists the help that comes with it. They include priority support in an emergency, advance notice of scheduled power cuts wherever possible, and the chance to name a family member or carer to receive the supplier's messages.

The MND Association says being prepared for power cuts is essential for anybody who depends on their ventilator for more than 14 hours a day, and that some suppliers or care teams may be able to help with a back-up generator for longer cuts. Whether your relative is at that point is for the team to say. If they use NIV for a few hours at night, the plan can be short. If they use it most of the day, it needs to be written down and every carer needs to have read it.

The Kent Community Health NIV leaflet says the mask should fit firmly but not too tightly, and that a small leak at the bottom is common and does not affect how well the machine works. How to fit the mask and answer each alarm is taught by the team on your relative's own machine, and you and any carer follow that teaching.

Two things help if your relative goes into hospital. Hull and Kent both say to take the ventilator with them, and Hull asks the family to let the home ventilation team know, because some ward staff are less familiar with the equipment. NICE asks for the GP and the emergency services to be told that somebody with motor neurone disease uses NIV, so ask the team whether that has been done.

NICE asks the team to provide night-time help and training where somebody cannot use the equipment on their own, including removing or replacing the mask in an emergency. The MND Association says the health and social care team can assess whether somebody needs to be in the house to respond quickly, and that some ventilators have built-in alarms for when a person cannot call out. A person who can take their own mask off and use the machine alone may need nobody awake. A person who cannot take the mask off themselves may need somebody close by all night. Ask the team which describes your relative, and to write it in the care plan.

If the answer is somebody awake, waking night or sleeping night explains the difference between a carer asleep in the house and one awake beside the bed. If the ventilation has reached most of the day, how many carers a 24-hour team takes sets out the rota shapes, and the MND Association says that at that stage a care package usually includes trained care workers even with strong family support.

A carer can take on the mask and the other ventilator tasks only once your relative's specialist team has trained them and signed them off for your relative. Delegated healthcare tasks explains how that hand-over works and who stays answerable afterwards. The sign-off is for one named carer and one person, so a second carer or a stand-in needs their own. The client contract lets a carer send a substitute, and lets you object on reasonable grounds, which include whether the substitute can meet the agreed care needs.

When you are building night support around the machine, you can search for carers near you and compare their rates, and ask each one about their experience with NIV or other breathing support. What a carer writes on their profile is their own account. PrimeCarers checks a carer's identity and right to work, an enhanced DBS issued within the last 18 months, and holds an online interview. We do not check qualifications, training or clinical skills, and we do not introduce nurses, so any experience a carer describes is for you to ask about and for the home ventilation team to assess. Every visit booked through PrimeCarers is insured, by the carer's own policy or by cover PrimeCarers arranges where they do not hold one. Ask the insurer in writing whether that cover extends to a ventilator task the team has delegated. Whether part of the day needs a nurse instead is covered in nurse-led or carer-led complex care.