Adult Social Care Glossary, v 0.6

Judging 'substantial difficulty' in being involved
7.10 Local authorities must consider for each person, whether they would have substantial difficulty in engaging with the local authority care and support processes. The Care Act defines 4 areas in any one of which a substantial difficulty might be found, which are set out below.

Understanding relevant information
7.11 The first area to consider is understanding relevant information. Many people can be supported to understand relevant information, if it is presented appropriately and if time is taken to explain it. Some people, however, will not be able to understand relevant information, for example if they have mid-stage or advanced dementia.

Retaining information
7.12 The second area to consider is retaining information. If a person is unable to retain information long enough to be able to weigh up options and make decisions, then they are likely to have substantial difficulty in engaging and being involved in the process.

Using or weighing the information as part of engaging
7.13 The third area is using or weighing the information as part of the process of being involved. A person must be able to weigh up information, in order to participate fully and express preferences for or choose between options. For example, they need to be able to weigh up the advantages and disadvantages of moving into a care home or terminating an undermining relationship. If they are unable to do this, they will have substantial difficulty in engaging and being involved in the process.

Communicating their views, wishes and feelings
7.14 The fourth area involves communicating their views, wishes and feelings. A person must be able to communicate their views, wishes and feelings whether by talking, writing, signing or any other means, to aid the decision process and to make priorities clear. If they are unable to do this, they will have substantial difficulty in engaging and being involved in the process.

7.15 For example, a person with mid-stage or advanced dementia, significant learning disabilities, a brain injury or mental ill health may be considered to have substantial difficulty in communicating their views, wishes and feelings. But equally a person with Asperger's may be considered, as may a frail older person who does not have any diagnosis but is confused as a result of an infection, or a person who is near the end of their life and appears disengaged from involvement and decision-making. Within this context, it is the person's ability to communicate their views, wishes and feelings which is fundamental to their involvement rather than the diagnosis or specific condition.

7.16 Both the Care Act and the Mental Capacity Act recognise the same areas of difficulty, and both require a person with these difficulties to be supported and represented, either by family or friends, or by an advocate in order to communicate their views, wishes and feelings.