How to Tell When Something is Wrong

Families of people with high support needs have shared that it can be difficult to tell when something is wrong and the person is in pain or feels sick. Sometimes people are unsure if people with high support needs are in pain, or if they feel pain, because they don’t always seem to communicate that they feel pain in the same ways as everyone else. Other times a person may just be very sleepy, or not interested in eating or drinking, and it can be hard to tell if its just an off day or if they are actually really sick and needing medical attention.

little girl with down syndrome using toy stethoscope on teddy

Behaviour when something is wrong

Firstly it is important to know that people with disability do feel pain, although they might not express pain in the ways we expect. Sometimes when people express pain very differently people might think that they have a high pain threshold. We need to be careful about saying this about a person unless we are very sure, because it can result in somebody not getting the pain medication they really do need. Researchers have found that people can express pain and illness through their behaviour, and that certain patterns of behaviour can be linked to specific conditions. According to Cerebra in the UK the following behaviours can all be linked with pain or illness:

  • Crying or screaming
  • Reduced interest in doing things the person normally likes
  • Hyper-activity, squirming, or shifting back and forth
  • Being less active than usual
  • Self injury or aggression
  • Property damage
  • Changes in appetite or sleep

The FLACC Pain Scale can be used with some people to help to work out if they may be in pain, and how much pain they are in. It is important to remember that when people have complex needs they won’t necessarily follow these patterns so the person may still be in pain even if they don’t show the signs on the FLACC scale. You can make your own version of the FLACC pain scale based on what you observe when the person is feeling well, in moderate pain or in a lot of pain.

The Cerebra booklet ‘Pain: A guide for parents’ explain in more detail the common causes of pain and illness for people with disability and the patterns of behaviour which can accompany them, and also has a copy of the FLACC pain scale.

Families have shared that there have been times when their family member with high support needs was sick, or becoming unwell, but they weren’t sure how to tell. It can be helpful to write down what you observe when the person is well, and what’s different when they are sick or in pain. People have behaviours, or patterns, when they are getting sick which it can be useful to notice, even if you aren’t sure what exactly is wrong. There is a range of ways that people behave when they are in pain or unwell, which includes aggression, shutting down, sleeping or eating less or just being less interested in the things they normally like. When we observe more closely sometimes we can notice more subtle signs that a person is getting sick, like moving their body more slowly, quickly or just differently. These can be recorded and shared with school or support staff too.

Research says that family members and other caregivers are able to spot the signs that a person with disability’s health is deteriorating accurately much earlier than clinical observations can. Spotting the signs something is wrong early can prevent unnecessary hospital admissions.

It can be important to tell your medical practitioner about how the person is when they are well, and the things they are doing to make you think they might be sick, to make sure they understand that its not the person’s disability causing them to appear unwell.

Some families find the Stop and Watch tool helpful. This tool highlights 12 signs that can most commonly indicate that somebody with a disability is unwell. You can download the Stop and Watch poster here.

Another way to tell if a person is sick is to observe their vital signs.These are measures like:

  • Temperature
  • Pulse rate
  • Breathing rate
  • Blood pressure
  • Oxygen saturation

These measures help us to know when something is wrong. If the person’s reading for any of these is out of the normal range, or going up, or down, over time, then they may be sick. You can ask your GP to help you to make a plan and decide which equipment you need at home to monitor the health of the person with high support needs, and which readings might indicate that they are unwell or need medical attention.

Families have also said that the more difficult it is to tell if a person is sick, the earlier we might need to seek medical attention. Even if you just have a hunch that the person you support is sick, its ok to ask for help. Especially when a person cannot tell you they are sick or in pain, it might be better to ‘err on the side of caution’ and ask for medical attention.


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How to Tell When Something is Wrong

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Communication for Health

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Advocacy for Health

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Delivering Better Health Outcomes Report

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