Challenges in Managing Long-Term Ventilation in the UK
As more children and young people in the UK need long-term ventilation (LTV), healthcare providers are facing big challenges. The number of children needing LTV has more than doubled in the past ten years, putting pressure on medical resources and care systems.
Along with more patients, there are more very young children needing 24-hour ventilation, making it even harder for hospitals and families to manage.
Providers also deal with equipment problems, like broken ventilators and not having enough backup supplies, which can put patient safety at risk.
Table of contents
What is long term Ventilation?
Long term ventilation means using a machine to help someone breathe for weeks or months. It’s needed for patients with long-term breathing problems like:
- Neuromuscular disorders (e.g., ALS, muscular dystrophy)
- Chronic lung diseases (e.g., COPD, asthma)
- Lung or chest problems
- Brain or nervous system disorders affecting breathing
Ventilation can be done through a tube (tracheostomy) or a mask (like CPAP or BiPAP), depending on the patient’s needs.
The goal is to help the patient breathe better and improve their quality of life.
Long-term ventilation can be used in hospitals or at home, where patients can feel more independent. Regular checks and adjustments are important to give the best care.
Challenges in Meeting the Growing Demand for Long-Term Ventilation in the UK
As the number of children needing long-term ventilation (LTV) in the UK continues to grow, healthcare providers face many challenges in managing this complex care. Here’s an overview of some of the key issues:
1. Increasing Demand
- The number of children needing LTV more than doubled from 933 in 2008 to 2,093 in 2018.
- This sharp increase puts pressure on healthcare services, requiring more resources to keep up with the demand.
2. Changing Patient Demographics
- More children under two years old are starting LTV, growing from 26% to 39.2%.
- A larger number of children now need LTV due to conditions like breathing problems or brain and nerve issues.
3. Intensity of Care Required
- The number of children who need LTV 24 hours a day has roughly doubled, from 9.4% to 18.4%.
- This means more intensive care is needed, which puts extra strain on hospitals and healthcare staff.
4. Equipment Issues
- Faulty or damaged equipment is a common problem in pediatric LTV care.
- Ensuring all equipment is well-maintained and ready to use is a constant challenge.
5. Staff Training and Competency
- Many healthcare workers lack proper training to care for children on long-term ventilation.
- It’s also hard to make sure that all caregivers—whether family members, nurses, or school staff—are trained well enough.
6. Coordination of Care
- Caring for children on LTV requires teamwork between different healthcare services and professionals.
- Coordinating this care can be complicated, especially when different teams need to work together.
7. Support for Families
- Parents of children on LTV often face a lot of pressure and stress.
- It’s hard to provide enough support and resources to help families cope with the demands of caring for a child on LTV.
8. Transition from Hospital to Home
- Moving a child from hospital to home-based care is difficult and time-consuming.
- This transition requires careful planning to ensure the child’s safety and well-being at home.
9. Ethical Considerations
- Deciding when to start, continue, or stop LTV can be a tough decision for doctors and families, especially when it comes to end-of-life care or quality of life.
10. Resource Allocation
- The high cost and resource demands of LTV care make it challenging to provide ongoing support, especially with limited healthcare resources.
11. Emergency Management
- Caregivers need to be trained to handle emergencies like blocked airways or equipment failures, which can be life-threatening.
12. Long-Term Complications
- Children on LTV may face long-term issues such as slow growth, developmental delays, and frequent infections.
- Managing these health problems requires ongoing attention and care.
Common Equipment Failures and Issues in Pediatric Long-Term Ventilation
In addition to the challenges of managing LTV care, there are also common equipment issues that can affect safety and care quality. Some of the most frequent problems include:
1. Faulty or Damaged Equipment
- The most common issue reported is faulty or damaged equipment, with 54 incidents of this type.
2. Problems with Specific Equipment
- Suction machines often fail (14 incidents).
- Tracheostomy tubes can malfunction (9 incidents).
- Tracheostomy tapes sometimes cause issues (8 incidents).
3. Ventilator Failures
- Ventilators are estimated to fail about once every 1.25 years of continuous use.
4. Issues with Equipment Packaging and Instructions
- Sometimes, the packaging information does not match the item.
- Items may be packed in similar-looking packaging, leading to mistakes.
- Equipment instructions may not have all the necessary details.
5. Lack of Backup Equipment
- Some parents don’t have the backup equipment needed to replace tracheostomy tubes in emergencies.
6. Problems with Supplies
- It can be difficult for families to get the right equipment and supplies when they are needed.
7. Tracheostomy-Related Issues
- Tracheostomy tubes can come out or become dislodged (21 incidents).
- The wrong size tracheostomy tube may be fitted (12 incidents).
- Tracheostomy tubes can become blocked (3 incidents).
8. Ventilator Setting Errors
- Occasionally, ventilator settings may be incorrect (though this is rare, it can still happen).
9. Oxygen Supply Issues
- There have been instances where oxygen cylinders were found to be empty, putting patients at risk.
Importance of Proper Equipment Maintenance and Training
These issues highlight how important it is to maintain equipment properly, train caregivers, and ensure backup systems are in place.
Addressing these challenges can help improve care for children who need long-term ventilation.
Ventilation awareness training is important for anyone helping care for patients on long-term ventilation. This includes healthcare workers, family members, and school staff.
By learning about ventilation, emergency procedures, and how to look after the equipment, they can help avoid problems, react quickly in emergencies, and give the best care possible.
Other important training:
- Nebuliser Training
- Palliative Care Training
- Tracheostomy Training
- Oxygen Therapy Training
- Suction Training
- Respiratory Care Training
You can book these training by visiting our clinical course page or send us a mail: enquiries@caringforcare.co.uk. Our courses are Skills for Care Endorsed.
LTV FAQs
Some problems with long-term ventilation include:
Ventilator-associated pneumonia (VAP): A serious lung infection that can make patients very sick.
Barotrauma: Damage to the lungs from too much air pressure.
Muscle weakness: Not using breathing muscles for a long time can make them weak.
Heart problems: Ventilation can cause issues like low blood pressure or heart problems.
Skin damage: Staying in one position too long can cause skin sores.
Mental health issues: Long-term ventilation can lead to confusion, anxiety, and other mental health problems.
In the UK, long-term ventilation (LTV) means providing breathing support for more than 3 months.
This can include:
Invasive ventilation with a tracheostomy tube.
Non-invasive ventilation with a mask
LTV is needed for people with long-term breathing problems or other conditions that affect their ability to breathe on their own.
The goal is to help with breathing and improve quality of life. LTV is provided in hospitals, care homes, and sometimes at home with support from healthcare services.
Yes, being on a ventilator is considered life support. It helps patients breathe when they cannot do so on their own, keeping them alive.
The ventilator delivers air or oxygen to the lungs, helping maintain oxygen levels.
It’s often used in intensive care for patients with serious breathing problems, giving time for their condition to improve or for further treatment.
Two problems that can happen from too much ventilation are:
Ventilator-Associated Lung Injury (VILI): This occurs when the ventilator settings are too high, causing the lungs to stretch too much, leading to damage and inflammation.
Oxygen Toxicity: Breathing in too much oxygen for too long can damage the lungs and other organs, making it harder to breathe.
Both problems show the need to carefully monitor and adjust ventilator settings to avoid harming the patient.
Resources
Gov UK: https://www.gov.uk/government/news/update-on-the-ventilator-challenge
National Library of Medicine: https://pubmed.ncbi.nlm.nih.gov/37125802/
NHS Monthly Report October Stats: https://www.england.nhs.uk/long-read/monthly-operational-statistics-october-2024/
British Society for Paediatric Palliative Medicine: https://adc.bmj.com/content/96/Suppl_1/A80.3
National Library of Medicine: https://pmc.ncbi.nlm.nih.gov/articles/PMC7212935/
NHS Alderly Hey Children: https://www.alderhey.nhs.uk/services/long-term-ventiliation/
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