There are two situations in which a tracheostomy may be needed.

• Emergency: Someone who is severely unwell may be given a tracheostomy to support their breathing while their illness is treated in an intensive care unit, for a prolonged period of ventilation. This allows the person’s breathing to be supported while they recover from their severe illness, and there is a lower risk of chest infection.

• Planned: A tracheostomy may be considered following discussion with a patient who is dependent on non-invasive ventilation using a mask if the mask is not providing adequate ventilation, or if it is too uncomfortable to wear and impairs quality of life. The decision to have a tracheostomy is complex, and preferences are personal to the individual. In some cases, a hospital admission for a tracheostomy may last for several months, because it may take a long time to organise the specialist care that is required to look after someone who is tracheostomy ventilated outside hospital.

People who were swallowing before tracheostomy usually manage to eat and drink by mouth after a period of adaption following the procedure. Similarly, if speaking before the operation, it is often possible to talk with the tracheostomy in place. To enable mechanical ventilation, the tracheostomy tube will initially have a cuff on it that seals the tube into the windpipe. It is not possible to speak with the cuff up.

Over time and depending on the person’s underlying condition, it may be possible to ventilate without the use of this cuff and then speaking can occur. However, for many people, especially those with Motor Neurone Disease, swallowing and speaking may be impaired before the tracheostomy procedure and will not improve afterwards.

The procedure is normally done with sedating medications and carries common risks including bleeding, pain, infection and damage to surrounding areas. If the tracheostomy tube is accidentally pulled out in the early post-procedure period, this can be a serious problem as replacing it into the windpipe can be difficult. After recovering from the procedure, there should not be too much discomfort in the long-term.

Top Tips:

1. Take photos of all equipment with reference number and supplier included. Keep this in a folder (both physical and computer based). This is also useful when asking for replacement kit.
2. Also ask your clinician for appropriate alternative suppliers and kit in case of supply issues with regular items.
3. Photograph the set-up of your equipment and circuitry and have on the wall or again in an accessible folder.
4. Video all procedures once, for example circuit changes to familiarise family and care providers.
5. If you have a problem, get advice/help quickly from your care provider to avoid escalation of the problem. Ensure all key contact numbers are included in your care folder. For example, home ventilation service and Tracheostomy care team.

A “Blue Box” which contains:

• Spare tracheostomy tube: x1 same size, x1 smaller

• Inner tube

• Dressing for under tracheostomy tube
• Swabs for cleaning the tracheostomy tube and the area around the tracheostomy site

• Saline solution
• Lubricant
• Tape/neck collar to hold tube in place
• A manometer to check the pressure of a tracheostomy cuff, if you have a cuff

Ventilator and circuit:

• Tubing connecting the ventilator to humidifier and HMV user
• A clear way of removing carbon dioxide waste gas. This will typically be an exhalation valve/port. Other options include active exhalation valve or dual limb circuit (2 tubes: on air in and one air out)
• Humidifier including water supply and chamber, and heater or an HME (heat moisture exchanger)
• Filters as directed by your local ventilation service for use with the circuit
• Catheter mount or connector to attach the circuit to the tracheostomy tube
• Nebuliser/adaptor for tracheostomy if having any inhaled therapies
• Cuff manometer if the tracheostomy has a cuff (inflatable balloon) and syringes to put air out of the cuff if a cuffed tube is in place
• Syringes to draw secretions from a cuffed tracheostomy (for those with a subglottic port)
• Sterile water for humidified circuit

Secretion management:

• Suction machine and catheters (endotracheal or Yankauer) which are supplied locally
• Manual insufflation-exsufflation device (“cough assist”)
• Suction catheters to attach to suction machine to extract secretions from the tracheostomy tube and trachea

Personal care and communication

• Mouth care kit
• Speaking valve

• Assisted communication devices, such as Eye Gaze, paper charts, Big Mac red button

Any emergency equipment advised as needed by Ears Nose Throat Team (ENT) or your ventilation team, for example, Bag-valve-mask.

It is essential that there is an artificial way of adding moisture back to the ventilated air that is breathed in via the tracheostomy.

This is often supplied with an external humidifier. This humidifier needs to be in tracheostomy mode and home mode. It will maintain a heated temperature via a heater wire to the circuit and humidifier and measure this with a temperature probe.

A humidified circuit may be used all the time. However, some patients have time on a dry circuit in the day. They may have additional humidification via an HME-humidification moisture exchange device, a sponge-like connector that is able to re-cycle the warmth from the first breath to continue to moisten the air for other breaths. It is important that a dry circuit is used during transportation to avoid any water spilling into the tracheostomy tube.

It is often recommended that humidified circuits are used for at least night-time and can be up to 24 hours during infections (likely to be thicker phlegm) or indicated by your health care services.

If any additional oxygen is added into your ventilator circuit this is a dry gas and can increase the need for a longer time on the humidified circuit.

If a patient is able to have any time off the ventilator, they will still need to have a way of moistening the tracheostomy tube. This includes a Swedish nose/Buchanan bib/protector and/or frequent nebulised saline.

It is important that if the humidifier is not working that you contact your healthcare team as soon as possible because it can lead to thicker phlegm this may cause a blockage to your tracheostomy tube or a chest infection.

• Ensure that you have a user manual for the device and that you understand any error codes which could be encountered and what to do about them. Manuals can often be found online if your clinician has not provided one.
• Have a spare humidifier and wires if possible.
• Have an alternative method of moistening available in case of broken kit, for example, HME device and nebulised saline.
• The humidifier can empty out a lot of water into the tube, called ‘rain out’ if the room/outside environment is very cold and the humidifier makes a big heat increase. This can happen if a window is left open or in winter months. Insulators and water traps, which are buckets in the tube, can help with this. Regular emptying of the water from the tube can help stop it from building up.

Being discharged from hospital with tracheostomy ventilation can be daunting for you and your caregivers, given the highly specialist nature of the care that is needed. It is common for a hospital admission to be prolonged in order to make suitable care arrangements, so it is advisable to start arranging this as early as you can. Tracheostomy ventilation can be delivered in the home environment and in specialist nursing homes by suitably trained staff. Training must be delivered by experts at a specialist ventilation unit, and they must be satisfied that caregivers fulfil required competencies.

Individuals receiving tracheostomy ventilation outside a hospital require 24-hour supervision. This is because emergencies can arise, such as blockages or displacement of the tracheostomy tube or circuit disconnections. These need to be addressed immediately to reduce the risk of potentially life-threatening complications. This level of supervision and care can feel intrusive but is important to ensure that you are safe.

The tracheostomy tube must be changed regularly (usually once a month) to reduce the risk of infection. This is usually performed by trained healthcare professionals. In some cases, it can be performed by caregivers who have received appropriate training.

Tracheostomy ventilated individuals require close management of their secretions. This is done using suctioning, where tubing is passed into your mouth or tracheostomy. A “cough assist” machine may be used to simulate a cough. Medications can also be used to reduce the volume of secretions and loosen the consistency. It is important to prevent build-up of secretions to reduce the risk of developing chest infections.

You will continue to receive regular outpatient follow-up from clinicians at the specialist ventilation unit who setup your tracheostomy ventilation. Some specialist ventilation units are supported by an outreach service, who can perform home visits for people who are unable to attend clinic.

Depending on individuals’ circumstances, tracheostomy ventilated individuals may be able to leave their home for short periods, provided they have the necessary equipment. This includes a wheelchair that can hold the ventilator and tubing, a backup ventilator and battery pack, a tracheostomy Blue Box, and suction/secretion equipment.

Being tracheostomy ventilated does not treat the underlying condition that led to respiratory failure. Progressive neurological conditions, such as Motor Neurone Disease, continue to progress with increasing levels of disability.

• If your tracheostomy accidentally falls out, your caregiver must reinsert it immediately and check why this happened. When inserting a new tracheostomy tube, it should be checked for faults, such as a leaking cuff.
• Some patients who have a lot of secretions have a tracheostomy with a subglottic port. If this becomes blocked and your caregiver cannot remove secretions, you will need to arrange an emergency tracheostomy change, which might entail attending your local Accident & Emergency department.