The objectives of our LTV project are similar to those of the gastrostomy project, but it focuses on the care and safety of children cared for at home who are totally dependent on a mechanical aid to breathe ie have level 3 ventilation needs.
As healthcare techniques have improved, an increasing number of children who previously would never have had a life outside hospital are now able to be discharged home with the aid of specialist support packages, where they are cared for primarily by their parents and families. Many of these technologically dependent children will have multiple co-morbidities.
Our project aims to ensure that every child in the Thames Valley with LTV needs will spend no longer in hospital than medically necessary and will receive safe, quality care in the community.
This means all children will have:
- A manageable and effective pathway of care
- A personalised care plan
- Access to education and enrichment activities
- Care delivered by trained and skilled staff
- Fewer unnecessary admissions to hospital
In conjunction with the Thames Valley Children’s Palliative Care Network and other key stakeholders, this project has developed a regional evidence based best practice Pathway and Standards of Care document for this group of patients which was launched on 5 December 2018. An implementation phase is now underway.
The document is available to download here.
Documents
Towards developing an ethical framework for decision making in long-term ventilation in children
Ray et al, BMJ June 2018
Analysis of paediatric long-term ventilation incidents in the community
Nawaz et al, BMJ December 2019