Children’s Long-Term Ventilation Pathways

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Our Story

Background
2006-2008
2008-2010
2010-2012
2012-2014
NETwork
2015-2016
Background

An emerging population

Medical advances have resulted in more children surviving premature birth or critical illness, which has led to a new group of children who are ‘survivors’ but who remain dependent upon medical technology.

Those children who need a tracheostomy (surgically placed breathing tube)  because they have become dependent on a ventilator (breathing machine) to survive, are spending many months in the intensive care unit, even after they are medically stable enough to go home.

While the ventilators have become more advanced and portable, the NHS has not changed to keep up with the needs of these children and their families, and ‘the system’ acts as a barrier to achieving safe and timely care closer to home.

2006-2008

The beginnings of a new regional service

Specialist commissioners for paediatric intensive care asked the Royal Brompton to develop an outreach service to identify the barriers to achieving a safe and timely discharge from hospital, to create a standardised process and to suggest solutions that would work across the region.

In these early days a nurse and consultant visited all centres in London and the South East to meet children on long-term ventilation, and their families, and to learn from both hospital and community staff about the common barriers within the hospital to home journey.

Between 2006-2008 outcomes were captured for 16 children who went home on long-term ventilation.  This revealed that the average length of stay in hospital was 21 months per patient. It was shocking to realise that for almost half of the time (10 months) children were medically fit to be discharged from hospital.

2008-2010

The idea for a web based pathway

Between 2008 and 2010 Dr Halley worked on developing a ‘hospital to home’ solution for children on long-term ventilation. The idea was described as a central web based pathway that would be patient centred and act as a central resource for the team around the child, whether they worked in the hospital or the community. This pathway would have a structured process with workflow that tracked the outcomes around each child, and automatic features to reduce the administrative burden on the clinical staff.

This web based pathway was a pipe dream for the future but in the meantime a “paper pathway” was created which allowed the process to be tested in the real world. The patient stories gathered over the previous 2 years allowed the key stages of the discharge process to be described in detail.

During this time outcomes were measured on another 17 children and this showed that the length of stay in hospital had come down to just over 13 months per patient, with an average of just under 7 months when the child was medically fit for discharge from hospital.

2010-2012

Creating a safe patient journey

Having described the ‘paper pathway’ and seen some benefits from applying it to patients in the real world, Dr Halley received a grant from NHS London Regional Innovation Fund to build an integrated care solution for children on long-term ventilation.  With this support the team grew to include expert clinicians with nursing and physiotherapy background, who could ensure that the patient journey was safe by providing an expanded service that included (1) highly specialised clinical support (2) outreach education and training and (3) discharge planning support.

The discharge pathway continued to develop and outcomes continued to improve. The number of referrals were increasing and were earlier in the patient journey.

During this period hospital length of stay was captured for 25 children who went home on long-term ventilation. This showed further reduction in hospital length of stay to an average of just under 11 months per patient, with an average of just under 5 months when a child was medically fit to go home.

2012-2014

A new ‘Hospital to Home’ service

During this period the LTV service grew in three key areas and was relaunched as the new ‘Hospital to Home’ Service:

  1. A growing team of unique people – to provide expert skills across a range of disciplines
  2. A clearly defined process – to identify and track the key tasks within the hospital to home journey
  3. A shared NHS platform – hosting our secure web based patient centred pathway

The combination of all three components is essential to ensuring safe and effective care. During this time the web based pathway was being used by the expanding London regional LTV service based at the Royal Brompton. Outcomes were captured for 24 children who went home on long-term ventilation. This showed further reduction in hospital length of stay with an average of just over 8 months per patient, with just under 3 months when the child was medically fit for discharge from hospital.

NETwork

Building a national ‘Hospital to Home’ network

Since 2013 via a National Engagement Team (NET) the Hospital to Home service has been delivering a national QIPP initiative (Quality, Improvement, Productivity and Prevention). This allows us to offer the ‘Hospital to Home’ service to any LTV team in NHS England free at the point of use. This has created a functional network of caring professionals who are dedicated to sharing best practice and improving the outcomes for LTV children and their families.

The service continues to grow, providing not only the web based pathway and ability to drive a more efficient discharge process, but additional support through a dedicated welfare and housing support team and a ‘solutions library’ where we can share and disseminate solutions to those difficult problems we all come across in the process of achieving safe and timely care closer to home.

2015-2016

Our Future

The Hospital to Home team are dedicated to delivering continuous improvement for patients and the NHS. We recognised that the principles of the LTV exemplar pathway, and the process of transfer between centres from hospital to home, could be applied to other clinical pathways, particularly where patients needed to be cared for across multiple organisations. A new pathway has been developed for adults patients with severe acute respiratory failure requiring extra-corporeal membrane oxygenation. Further pathways are currently in consideration.