Neuro-disability and Home Mechanical Ventilation

Background

Around 2% of people in the UK have a learning disability. People with a learning disability are more likely to have other medical conditions and experience avoidable hospital admissions.  Common causes of admission to hospital are respiratory illnesses such as pneumonia.

People with learning disabilities and their families often describe a reduction in the quality of care following entering adulthood and it is important that where required, there is a clinical team able to co-ordinate care and manage often complex medical problems.

Why do neuro-disability patients require ventilation support?

A minority of people with a learning disability have significant respiratory disease and require specialist respiratory input.  This can present in many ways but includes:

  • Under breathing which is usually due to a scoliosis (a sideways curvature of the backbone)
  • Regular chest infections
  • Problems with secretion managemen

Ventilation Support

All home ventilation teams look after people with learning disabilities who under breathe and require support with their breathing, with extra air delivered during breathing by a non-invasive ventilator.  This is usually overnight and via a facemask but can be during the day and/or via a tracheostomy (breathing tube accessed through the neck).  Home ventilation teams will often be the main clinical team for these patients.

Cough Assist

Some people with learning disabilities will have a weak cough and difficulty clearing their chest which can lead to regular chest infections.  They may benefit from a cough assist machine following assessment by specialist teams.  Some home ventilation teams will supply these machines and look after patients with them but in some areas this treatment will be sourced and delivered by other clinical teams.

Secretion Management

When secretion management is a problem (for example sputum stuck on the chest or in the throat or saliva drooling), there are often several options for treatment which are detailed in the secretion management section of this website. https://hmvip.co.uk/secretion-management

Many home ventilation teams are not resourced to manage these problems, and other teams may be required.  However, in some regions, there is this expertise within home ventilation teams.  Your GP may know how this is managed locally.

Airway Clearance Plan

An airway clearance plan is important for patients with neuro-disability. They may have poor swallow, lots of oral secretions, and ineffective cough, which can lead to more chest infections. The airway clearance plan could be made by a hospital or community physiotherapy team. This could be taught to family, partners or care teams to ensure daily preventative chest clearance. It may include positioning, rolling and manual techniques depending on medical conditions. For some individuals oral suction can be beneficial to assist with clearing oral secretions (saliva and phlegm).

10-RHN-FS-Safe-Oral-Suctioning-in-Adults-with-a-Neuro-disability.pdf (hee.nhs.uk)

There may be a need to work with your GP, medical, nursing or therapy team to see if medication may be indicated for example mucolytics (thin phlegm) or hyoscine (dry out saliva) or nebulisers as prescribed. Other devices like mechanical insufflator: ex-sufflator (MI:E or often called a cough assist) could be helpful but jaw position, capacity for a person to synchronise with the device , for example if they have severe learning difficulties may mean this is not be effective. The cough assist may be sourced through a ventilation service in some cases, or via your community physiotherapy team, but it may require an individual funding request through the Intermediate care bureau (ICB).

The Vest High-Clearance Therapy

There are other devices that could be considered although there is limited research into their use for example, the Vest high frequency chest wall oscillation

The Vest for delivering high-frequency chest wall oscillation in people with complex neurological needs (nice.org.uk)

Vaccination

Liaising with your GP/ care provider is important to ensure all recommended vaccinations are up to date including yearly vaccinations to help protect against respiratory illness.

Good Oral Hygiene

It may be challenging to keep good oral health in patients with neuro-disability. This can be because they may have jaw clenching or the opposite with a mouth that is always open. Jaw clenching can make it hard to brush teeth or use flossing tools. There may be a strong bite reflex making it challenging to get to the teeth. There may be oral sensory issues that make touching the mouth area difficult or unpleasant to the patient. Lip biting may also be common.

Mouth Care Matters factsheets for people with neuro-disabilities available – Mouth Care Matters

It is important for ongoing good oral health and patient comfort that oral hygiene and access to dental care is prioritised in this group of patients.

Additionally, there is thought to be a link between poor oral health/poor teeth health and developing aspiration pneumonia (a severe infection caused by food particles or saliva dropping down into the lungs). However, there is a need for randomized controlled trials to look at this link in detail and assess what treatments/cleaning methods may decrease this perceived risk of infection.

Aspiration Pneumonia and Oral Health | Current Otorhinolaryngology Reports (springer.com)

Neuro-Disability Case Study

Whilst most patients with a neuro-disability may be under the care of a home ventilation team because they have continued ventilatory failure with high waste gas level of carbon dioxide with or without obstruction (floppiness) in their upper airway. There is a growing group of young adults being transitioned into adult services, who may have been given long-term ventilation because they have had many prolonged hospital admissions. These often included a stay on the PICU with acute ventilation breathing support.

As they get better with treatment, they are discharged home without ventilation/breathing support. However, constant re-admission to hospital because of infection and a high carbon dioxide level (breathed out waste gas) led to decision-making by paediatricians to prescribe home ventilation. In some patients, this has led to fewer infections and hospital admissions. However, this is a case-by-case assessment and may not be appropriate in all patients with neuro-disability or funded/supported by service referral criteria.

References