Tracheostomy care at home: suction, who can do what, and the emergency plan

The NHS page on tracheostomy gives three reasons for having one: to help someone breathe if their throat is blocked, to remove fluid and mucus from the lungs, and to deliver oxygen from a ventilator. The National Tracheostomy Safety Project's principles of care for adults living with a tracheostomy in the community adds long periods on a ventilator, injury, burns and head and neck cancers, and notes that more people now live at home with one because more people survive a traumatic brain injury and because ventilators have become portable.

Some people keep a tracheostomy long term because the muscles they use to breathe or swallow have weakened. The MND Association's information on ventilation describes tracheostomy ventilation in motor neurone disease, and ventilator support at home covers the home ventilation team and what a carer can do around the machine. Care at home with MND covers how a package grows as the condition changes. Where a brain injury is the reason, acquired brain injury care at home covers the other changes the family will be living with. Some people with a tracheostomy also have a feeding tube, and PEG feeding at home covers that side.

The national principles of care set out what a discharge home should include: the essential information about the tube, funding for the care and the supplies, the equipment, training, and an emergency plan. They say the ward team must complete the training with the patient and family, and record that each person is competent, before discharge. Trust leaflets list what is taught. The York and Scarborough leaflet, Caring for your tracheostomy at home, names cleaning and changing the inner tube, stoma care and dressings, changing the neck ties, humidification, nebulisers, and what to do in an emergency. The Worcestershire information and assessment pack shows how the teaching is recorded, session by session, with the trainer's name against each skill.

If the discharge date is close and some of this is missing, say so to the ward. What to arrange before discharge day covers the rest of the list, and who can train a carer to do suction explains the sign-off in detail.

The Sandwell and West Birmingham tracheostomy leaflet says the emergency equipment given at discharge should be with the person at all times. The York and Scarborough leaflet suggests keeping everything in one easy-to-reach place that everyone doing the care knows, checking supply levels often and keeping anything electrical charged.

The national principles say every person living at home with a long-term tracheostomy must have an emergency box and plans written for them, covering a tube that blocks and a tube that comes partly or fully out. They say the plans should be part of the care plan and easy to reach, and that every carer involved must be familiar with them, because they differ from one person to the next. Training in the emergency plan is to be given to everyone who might need it, including the person with the tracheostomy, carers and family members.

On the ward you will have seen a sign above your relative's bed. The National Tracheostomy Safety Project publishes the bedhead signs and emergency algorithms hospitals use: a green one for a tracheostomy and a red one for a laryngectomy. The sign records the kind of airway your relative has and whether air may still reach the lungs through the mouth and nose, and the project designed the signs to guide whoever responds in an emergency. Copy the wording onto your plan at home, and ask the team to explain what it means for your relative.

The 999 route comes from the NHS: call 999 if someone who has had a tracheostomy is having difficulty breathing. For problems that are worrying but not an emergency, such as trouble swallowing, coughing after eating or drinking, noisy breathing, or pain around the tracheostomy, the NHS advice is to call NHS 111 or get an urgent GP appointment. If your relative is admitted to hospital, the national principles say the emergency box and the tracheostomy passport go too.

If the rota has to cover every hour, how many carers a 24-hour team takes sets out the shapes it can take and what each costs, and waking night or sleeping night explains the difference between a carer asleep in the house and one awake.

The national principles say any change in how well your relative can communicate should be reported to the healthcare team, such as the speech and language therapist. A carer who is with your relative every day may be the first to hear a voice getting weaker.

How a task like suction is handed to a carer, and who stays answerable afterwards, is set out in delegated healthcare tasks. For a tracheostomy, the point to hold on to is that the sign-off is for one named carer and one person. A second carer, a carer covering a holiday, or a substitute a carer sends in their place needs their own training before they are alone with your relative. The client contract allows a carer to send a substitute and allows you to object on reasonable grounds, which include whether the substitute can meet the agreed care needs. Whether part of the day needs a registered nurse rather than a trained carer is covered in nurse-led or carer-led complex care.

When you are ready to look, you can search for live-in carers near you and compare their rates, and ask each one about their experience with airways. 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 your relative's specialist 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 delegated airway task.