Policy briefing

Long-term ventilation: best practice in caring for children and young people

Concerns about standards of care with long-term ventilation reviewed by National Confidential Enquiry into Patient Outcome and Death 
Picture of a newborn receiving ventilation

Concerns about standards of care with long-term ventilation reviewed by National Confidential Enquiry into Patient Outcome and Death

Essential information

Long-term ventilation (LTV) refers to various types of respiratory support provided every day for a period of at least three months.

Ventilation is delivered either via a tracheostomy tube, or non-invasively via a face mask or nasal cannula. The aim of LTV is to improve survival and quality of life in people with conditions that have led to respiratory failure.

Reasons for long-term ventilation

The LTV child population ranges from small, often premature, babies requiring support for lung, airway or central nervous system problems they were born with to older children and young people with failing respiratory or neuromuscular function.

While people on LTV often have multiple co-morbidities and/or life-limiting conditions, their overall survival has improved

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Concerns about standards of care with long-term ventilation reviewed by National Confidential Enquiry into Patient Outcome and Death 

Picture of a newborn receiving ventilation
Picture: SPL

Essential information

Long-term ventilation (LTV) refers to various types of respiratory support provided every day for a period of at least three months.

Ventilation is delivered either via a tracheostomy tube, or non-invasively via a face mask or nasal cannula. The aim of LTV is to improve survival and quality of life in people with conditions that have led to respiratory failure.

Reasons for long-term ventilation

The LTV child population ranges from small, often premature, babies requiring support for lung, airway or central nervous system problems they were born with to older children and young people with failing respiratory or neuromuscular function.

While people on LTV often have multiple co-morbidities and/or life-limiting conditions, their overall survival has improved and now more people transition from child to adult services and are living for many years. It is not known how many children are on LTV in the UK.

What’s new?

Improvements to tackle the lack of coordination and inconsistent standards of commissioned care experienced by families with a child on LTV have been identified in a report, Balancing the Pressures, from the National Confidential Enquiry into Patient Outcome and Death.

Balancing the Pressures calls for active discharge planning to start at the point of an admission, and says transition planning should improve the move from child to adult services.

It recommends families and the multidisciplinary team (MDT) should be involved in the decision-making process about LTV.

Recent studies have found problems with LTV for children in the community. For example, a study published in the Archives of Disease in Childhood in 2019 identified a range of problems relating to LTV in the community, some of which raise serious safety concerns.

A qualitative study published in Nursing Children & Young People in 2019 said poor discharge planning was reported to lead to insufficient community staffing and training. A 2017 Nursing Children & Young People literature review also found that parents experienced a lack of support, suffered financially, had limited access to respite care and felt socially isolated.

Implications for practice

  • Ensure efficient care planning and discharge by providing an MDT as part of an integrated care pathway. This team should work across community and hospital networks of care.
  • Undertake shared decision-making at the point of LTV initiation, particularly if LTV is likely to be a life-long therapy. This should include input at all stages from children and young people, parents, the MDT, the GP and, if appropriate, palliative care.
  • Ensure high-quality discharge arrangements for people established on LTV who are admitted to hospital. This should begin on admission and be clearly documented in case notes, and any changes to respiratory care should be documented.
  • Ensure good ventilation care for people on LTV admitted to hospital for any reason by undertaking a standard clinical and respiratory assessment, as well as routine vital signs monitoring. This should involve, at a minimum, monitoring of respiration rate and oxygen saturation; involving the usual LTV team if the patient was not admitted under their care; and identifying clinical leadership of ventilation care.

Expert comment

Picture of Mark WhitingMark Whiting is WellChild professor of children’s community nursing at the University of Hertfordshire, and a member of the Nursing Children and Young People's editorial advisory board

 ‘Caring at home for ventilated children is a complex and challenging area. When a child comes out of hospital it can place significant pressures on the family, particularly if the child is receiving ventilation through a tracheotomy.

‘It can also be a major challenge for the local NHS to find sufficient support for children on LTV at home, especially if they need round-the-clock care, which can involve a team of up to six full-time nurses or healthcare assistants.

'The Balancing the Pressures report makes a number of strong recommendations, for example in relation to the need to start discharge planning early. Arranging discharge can take as long as 18 months because it involves considerable planning, including for equipment, adaptions to the home, a care package and training for parents.

‘The group of children on LTV at home continues to grow and it will be an increasing challenge to meet their needs, especially with the current shortage of nurses.’

 

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