Recognising acute deterioration

Patients with acute physiological deterioration are identified early.

Coordinated and reasonably adjusted care for best health outcomes

To assist with early identification of physiological deterioration, update vital sign monitoring plans to include accurate documentation of any complex health conditions and reasonable adjustments. Ensure the flow of this information across the person’s health care. The coordination of care is important to decrease delays in the treatment of an illness.^20,49,54 For instance, people who are non-verbal or have genetic syndromes may need a specific plan.

Develop individually tailored monitoring plans

Consider monitoring a person’s vital signs using ‘soft signs’ – changes in their normal behaviour – to identify initial stages of acute physiological deterioration. Monitoring methods such as early warning scores – which measure and record physiological data including pulse rate, blood pressure, respiratory rate, oxygen saturation and conscious level – have been shown to be effective for people with intellectual disability, when combined with observed changes in a person’s normal behaviour, such as new confusion, sleep, appetite and mood.^[78],[79] A person’s family, supporters or guardian may be able to provide information about the person’s ‘soft signs’.

Maintain patient safety using reasonable adjustment

Implement systems for identifying people who require reasonable adjustments and put those reasonable adjustments in place to assist with monitoring and observations that may detect physical and psychological changes.^41,49

With the person’s permission, include their family, NDIS disability support worker, behaviour support specialist or guardian, to gain advice about the person’s care, communication requirements and what reassurance they might need. This enables early recognition of a change in the person’s condition. 

• The NSW Clinical Excellence Commission REACH program actively promotes partnership between patients, carers, family members and the treating team, in recognising and escalating deterioration. It encourages patients, carers and family members to initially engage with the nurse or medical team, to escalate concerns about worrying changes in a patient’s condition.
• The NSW Clinical Excellence Commission Between the Flags system is designed to assist clinicians to recognise when patients are deteriorating and respond appropriately.
• Ryan’s Rule is a three-step escalation process to support patients of any age, and their families and carers, to raise concerns if a patient’s health condition is getting worse or not improving as well as expected. Ryan’s Rule applies to all patients admitted to any Queensland public hospital, including the emergency department, and in some ‘hospital in the home’ services.
• Queensland Health has tailored Ryan’s Rule resources for consumers with disability in an Easy Read social script and video.

Adverse outcomes relating to acute deterioration in a person’s mental state are prevented through early recognition and effective response.

Understand what is usual for the person with intellectual disability and maintain two-way communication 

As mentioned in Action 5.10 (Screening of risk), it is important to know what is normal for the person, and their baseline indicators of wellbeing. Baseline information can assist in recognising deterioration or signs of new confusion in a person’s mental state.

Strategies to identify a person’s baseline and subsequent deterioration in mental state include:

• Educating staff that a change or escalation in behaviour may indicate a change in underlying health and wellbeing, particularly for people who do not communicate verbally. These changes should trigger clinical assessments to establish underlying drivers of behaviour (such as pain, infections, constipation, ulcers or hunger)
• Asking the person’s family, NDIS disability support worker or behaviour support specialist about what is usual for the person. They may be able to assist with information about the person’s:
• Usual skills and capacity when well 
• Ways of expressing pain and distress
• Usual mental state.
• Using alternative or augmentative communication (described under Action 2.08) to provide the clinician with a means of directly assessing the person. An acute deterioration in the person’s mental state may impact their ability to communicate. Knowing how the person usually communicates will assist in identifying deterioration
• Providing the person and their family, supporters or guardian with accessible information. 

The University of NSW Department of Developmental Disability Neuropsychiatry has developed the MySigns app to support mental health assessment for people with intellectual disability and significant communication difficulties.