People with a learning disability do not always know when they are ill or need to see a doctor.
They may not be able to tell people that they feel unwell or different and therefore they are often reliant on those around them to notice changes or deterioration in their health. Support staff and families who know a person well will often notice things such as changes in behaviour or nonverbal cues, which may be indicators that they are feeling unwell and communicating pain or distress.
Diagnostic overshadowing is an ongoing barrier to people with a learning disability accessing appropriate care in a timely manner. It is important then that everyone being cared for has personalised tools to support carers in identifying signs of change in relation to that individual’s normal baseline.
Resources such as RESTORE2 are highly recommended as a physical deterioration and escalation tool for care/nursing homes based on nationally recognised methodologies including early recognition (Soft Signs), the national early warning score (NEWS2) and structured communications (SBARD).
Some signs and symptoms which may warrant investigation are below:
- Swellings or lumps.
- Changes in eating habits.
- Tiredness or lethargy.
- Weight loss or gain.
- Personality changes.
- Changes in toilet habits.
- Generally feeling unwell.
- Changes in behaviour.
- Asking for pain relief more often than usual.
- Clothes not fitting properly due to changes in body shape.
All those providing support, the health professionals, the families, the carers paid and unpaid all need to work together to improve early recognition of changes and in turn earlier recognition that a person may be nearing the end of their life.