Estimating the impact of the new definition of terminal illness for disability assistance in Scotland: research

Executive Summary

This paper provides estimates of the number of people who will receive Disability Assistance because they are terminally ill. It gives the estimated additional number of people applying for and being awarded each disability benefit and the total number of people receiving the assistance at any one time under the new guidance for Child Disability Payment (CDP), Adult Disability Payment (ADP) and Pension Age Disability Payment (PADP).

Social Security Scotland will have a different definition of terminal illness to that currently used for DWP disability benefits. Under the DWP system someone meets the definition if they have a progressive disease where death as a consequence of that disease can reasonably be expected within 6 months. The definition in Scotland will be that the progressive disease can reasonably be expected to cause the individual's death, with no expectation of the timeframe, but the disease should lead to an increased need for additional care and support.

We carried out a Delphi exercise with medical professionals who have experience of the current system under DS1500 rules. Delphi is a method for reaching consensus through a series of iterative surveys with experts on a subject. We shared the new guidance with the medical professionals, which details the change to the definition of terminal illness, and we asked how they thought this would affect the number of people eligible because they are terminally ill. They completed three surveys and between each one they were shown anonymised responses from the other panellists and asked if they wished to alter their response. This led to increasingly similar responses across the panel. The results of these surveys were used to estimate the impact of the new guidance on how many people of different ages with different conditions will apply because they are terminally ill.

There are a number of caveats to consider when interpreting these results. The assumptions provided through the Delphi exercise is the opinion of one group of medical professionals and there were variations in opinion between these experts. Another group of experts may have reached a different conclusion.

There is also uncertainty and judgements made when modelling the information from the Delphi panel. Central estimates have been produced using the average answers given by the panel but the actual figures could be higher or lower.

We estimate that the number of people who would be successful in their application for Disability Assistance because they are terminally ill might increase by around 90%. The number of people receiving Disability Assistance at any one time because they are terminally ill could triple.

The increase is driven by ADP and PADP and is a mixture of people who would have applied under DS1500 rules receiving the assistance earlier and people applying and receiving one of the benefits who wouldn't have under the DS1500 system. This could be because they weren't eligible, or could be a result of an increased awareness because of the change in definition.