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The basics of Long-Term Ventilation (LTV) in children

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You’ve just started working in the Children’s Emergency Department (CED). The triage nurse comes to let you know about Robin. He is eight years old, with a background of cerebral palsy and severe scoliosis. He has come in today because he has noisy breathing with rattly secretions that seem to be getting worse. The community physiotherapist (who has been visiting daily for the last 4 days) told Mum that Robin’s oxygen saturations were low.

Robin is an LTV patient and will likely need some extra planning should he need to be admitted to hospital.

You’ve never met an LTV patient before and are unsure what extra considerations you might need to make.

What is long-term ventilation (LTV)?

LTV is a form of respiratory support provided via mechanical ventilation every day for at least three months. The ventilator is connected to the patient by either a tracheostomy (invasive ventilation) or a form of mask (non-invasive). There are many mask types, but they largely cover the mouth and/or nose.

LTV is either:-

  • a ‘bridge’ – for example, while corrective cardiac or airway surgery is planned or bronchopulmonary dysplasia improves.
  • a ‘destination’ – the child will always need breathing support.

Many tracheostomy-dependent patients are ventilation-dependent and require 24-hour ventilatory support.  Patients will usually have non-invasive ventilation (NIV) overnight and, in some cases, for brief periods of the day.

Dependence on ventilation

When assessing an LTV patient in an emergency setting, it is vital to understand how reliant the patient is upon their breathing support.

  • Priority dependence/Level 3
    • Patients are critically dependent on ventilation and would come to harm if disconnected.
  • Severe dependence/Level 2
    • Patients are ventilation-dependent ventilation overnight. They would survive accidental disconnection but would come to harm if disconnected for more longer.
  • High dependence/Level 1
    • Patients are not dependent on their ventilators and, while they may sleep poorly or feel unwell, will not come to significant harm if not connected for 24 hours.

Dependence may increase acutely due to intercurrent illness.

Who needs long-term ventilation?

This is not an exhaustive list!

There has been a 2.5x increase in the use of LTV in children in the UK over the last 10 years. In 2019, there were 2,383 LTV patients in the UK. Recent advances in Neonatal and Paediatric Intensive Care have improved the survival of children with complex conditions. Advances in technology have also led to more portable ventilators. These can be operated and maintained by patients and their families at home. As a result, children needing respiratory support at home have an increased chance of survival.

You go to see Robin.

He is in a wheelchair with an NIV mask over his face. Every now and again, he coughs and struggles to get his breath. His mum, Gemma, is his main carer, and she explains that Robin has been unwell for the past week. He’s had a wet cough with more secretions than normal, and he’s needed to use his NIV machine more than he normally. The community respiratory physio (locally known in Nottingham as the Rapid Response Team) has been visiting Robin at home for the past four days. Still, today, his sats were dropping to 85% for prolonged periods. Gemma tells you that as well as the physio, Robin’s LTV Consultant has also prescribed some oral antibiotics. He’s been taking them for the past few days.

It sounds like Robin is quite poorly, but you want to get some idea of how sick he might be and what extra support he might need.

Gemma answers your questions.

Robin normally only needs his NIV machine while he sleeps, and he has recently stopped requiring oxygen overnight. Last winter, he had a chest infection and needed to be intubated for more than a week, and he required a prolonged course of antibiotics.

Since then, he has been well in himself. Gemma is worried, though, because she has noticed Robin is working hard to breathe, and his chest sounds quite wet. The community physio has been struggling to help clear his secretions.

Robin is haemodynamically stable, but he is needing NIV continuously to help with his increased work of breathing. He also needs oxygen – normally, he’d just be on air. You can see that Gemma has tried various physiotherapy techniques and suctioning to help him.

When you listen to his chest, the right side of his chest is quiet, but otherwise, he is crackly everywhere. He is slightly tachycardic but has a normal blood pressure. He is afebrile but Gemma says he feels warmer than he usually does.


Robin probably has a chest infection. You think he needs IV antibiotics and are worried he might also have developed a pleural effusion. You order a chest x-ray and send bloods, including cultures, and request a sputum sample and throat swabs.



Gemma asks, ‘What can we do about Robin’s secretions?’

You think fast. ‘What do you usually do?’

Gemma responds, ‘Ask the hospital physio to come and see him?’


You’re glad that Gemma knows the answer. You are no expert in chest physiotherapy! You call the paediatric physiotherapist who comes down to CED to review Robin and suggests:

Robin’s blood tests come back and show evidence of infection. His chest x-ray shows right-sided consolidation but no evidence of effusion. The physiotherapist feels he should get twice daily physio reviews as an inpatient.

You explain to Gemma that Robin needs admission to the High Dependency Unit (HDU). The higher nurse-to-patient ratio on HDU is ideal as Robin will need closer monitoring of his vital functions, progress and risk of deterioration than is possible on a general medical ward.

The nurses in HDU have more experience with ventilators. They know how to change settings for an acutely unwell/recovering child and have more confidence in managing any complications. As Robin is currently dependent on his NIV, he is unlikely to be a suitable candidate for the general paediatric admissions ward and would benefit from HDU care.

The LTV Team

Children on long-term ventilation have complex and varying underlying medical conditions that need input from multiple teams. This may include neonatology, paediatric intensive care, respiratory, cardiology, ENT, spinal injury, neuromuscular or neuro-disability specialists, as well as access to palliative care.

All tracheostomy-dependent children start their journey in a critical care environment and have already had intensive medical input. These patients also need input from a multi-disciplinary team of nurses, speech and language therapists, physiotherapists, OTs and orthotists, and doctors and have an identified medical lead. They may also have access to community teams, i.e. Rapid Response Physios and education liaisons.

When admitting an LTV patient acutely, let their lead clinician/LTV consultant know if you can.

Fast forward a week

Robin is now on the general medical ward.

He spent five days on HDU receiving regular physiotherapy and antibiotics and did not require intubation. His oxygen requirement was slowly weaned.

Whilst an inpatient, he was seen regularly by the LTV physios and nurses. You emailed his LTV team when he came through ED, so they could review Robin and support the family while he was on the ward.

This inpatient stay is the ideal time for any planned investigations to take place. Robin’s emergency care plan/RESPECT form and ventilator settings should be reviewed and updated while he is in hospital too.

Once he is medically stable, with improving inflammatory markers, resolving radiological changes, and lessening secretions, plans will be made for discharge.

The LTV team will then arrange a community follow-up with Robin and Gemma to see how he is recovering
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References

Balancing the Pressures A review of the quality of care provided to children and young people aged 0-24 years who were receiving long-term ventilation.

Barker N, Sinha A, Jesson C, et al. Changes in UK paediatric long-term ventilation practice over 10 years. Archives of Disease in Childhood 2023;108:218-224 https://adc.bmj.com/content/108/3/218

Commissioner’s Guide to NCEPOD Report Children and Young People on Long-term Ventilation https://www.ncepod.org.uk/2020ltv/LTV%20Commissioners%20guide.pdf

Elaine Chan, Martin Samuels, Long Term Ventilation in Children, Encyclopedia of Respiratory Medicine (Second Edition), 2022, Pages 330-362

https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/01/e07-spec-paedi-long-ventilation.pdf

https://www.hqip.org.uk/wp-content/uploads/2020/03/REF115_CH_LTV-Full-Report_FINAL-10.02.2020.pdf

https://www.researchgate.net/publication/353023526_Long_Term_Ventilation_in_Children

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