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

Comparing to other data on terminal illness

To validate these results we can compare the estimated number of successful applications from applying the Delphi output to the limited available data on the number of people with health conditions and deaths. This can help us decide how likely these estimates are a reasonable expectation of what might happen. This is mostly focussed on malignant disease since it is such a large driver of the results.

The estimated number of people successfully applying suggest that there would be around 4,200 deaths per year of people who were receiving ADP because they were terminally ill with malignant disease.

Statistics are available on the number of deaths in Scotland where the cause of death is malignant neoplasms. The number of people with this cause of death in 2019, between the ages of 15 and 64, was around 3,400 and there were a further 4,400 deaths from people aged 65-74.^[2]

PIP special rules clients are mostly people aged 16-64, but around 18% are 65 and over.^[3]

This suggests the estimated number of successful applications to ADP each month by people who are terminally ill with malignant disease is plausible, if the number of people who stop receiving the assistance on their death includes a number of people over 65. The number of deaths in 2019 due to malignant disease for people under 65 infers that at least 800 of the deaths each year from people receiving ADP because they are terminally ill are people aged 65 and over. There would be an estimated 1,500 people aged 65+ receiving ADP due to terminal illness, so this number of deaths each year is possible, but implies that this age group receive ADP because they are terminally ill for a smaller amount of time on average than younger individuals.

For PADP we are estimating that around 4,300 clients receiving the assistance because they are terminally ill with any condition will die each year. For people aged 65 and over there were over 45,000 deaths in 2019^[2] . Not all of these will have been due to a terminal illness, but our estimate is well within the total number of deaths in people age 65 and over. There were around 13,000 deaths in this age group from malignant disease alone in 2019.

Similarly, there were 67 deaths in children aged 1-14 in 2019^[2] which did not have an external cause, such as accidents, which is above our estimate for the number of people receiving CDP because they are terminally ill who would die each year (around 40 children).

We can also compare the estimated number of successful applications made by people with malignant disease and the number of people with a cancer diagnosis each year. Currently there are around 4,100 people with malignant disease who start receiving PIP in Scotland each year. Just over half of these are people successfully apply due to terminal illness. Some of these people applying under special rules for terminal illness might not actually be new to receiving ADP because they are already receiving it through the general rules.

The Delphi results suggest there would be an additional 2,000 successful applications made by people terminally ill with malignant disease each year under BASRiS. However some of them may be people who, without the introduction of BASRiS, would have applied under the general rules, so reaching an overall figure for the new recipients of ADP with malignant disease each year is difficult. A possible high estimate would be around 6,100 people, but this may double count some people who successfully applied under the general rules in the same year.

In 2019 in Scotland around 12,000 people aged 15-64 and 5,000 people aged 65-69 were diagnosed with cancer.^[4] The estimate of around 6,100 new clients seems plausible in this context of the number of people with a diagnosis each year.

We can't make the same comparison for PADP or CDP since there is no information available on the conditions of the people receiving assistance because they're terminally ill for AA or child DLA.

We can consider the total number of people receiving Disability Assistance who have malignant disease and how this relates to cancer prevalence in the population.

The Delphi estimates suggest the number of people who will receive ADP because they're terminally ill with malignant disease will increase to around 8,200 clients. Around 2,000 of these people would be individuals who would have otherwise received assistance under the general rules, but are either applying through the BASRiS rules earlier than they would have under DS1500 rules, or are applying under BASRiS where they wouldn't have under DS1500 rules.

Totals may not sum due to rounding.

Estimates up to 31 December 2019 give the number of people in the population who are living with cancer as 76,000 for people aged up to 65, and 127,000 aged 65 and over.^[4] Not all of these people would be considered terminally ill under the CMO guidance, but the Delphi estimates for terminally ill clients are well within these values.