Devolved disability benefits evaluation: Special Rules for Terminal Illness (SRTI) - commissioned research report – annex A

Introduction

Background and policy context

Where a child or adult living in Scotland has been diagnosed with a terminal illness, they may be eligible to receive disability benefits under Special Rules for Terminal Illness (SRTI). Special rules apply to Child Disability Payment (CDP), Adult Disability Payment (ADP) and Pension Age Disability Payment (PADP). Applications made this way require to be accompanied by a Benefits Assessment under Special Rules in Scotland (BASRiS) form for the patient, completed by a registered medical practitioner or registered nurse.

The Scottish definition of terminal illness, for the above purposes, is “a progressive disease that can reasonably be expected to cause the individual’s death”. This definition removes the 12 month life expectancy timescale currently used by the Department for Work and Pensions (DWP). Instead, the judgement as to whether a person should be considered terminally ill for the purposes of determining eligibility for disability benefits is made by clinicians involved in an individual’s diagnosis or care, based on guidance prepared by the Chief Medical Officer (CMO).

The Scottish Government commissioned independent research to gather feedback on how changes to Special Rules for Terminal Illness (SRTI) in the context of the devolved disability benefits have been experienced to date and to explore their relevant impacts. This report presents the findings from that work.

Methodology

A mixed method approach was used to gather feedback from key populations impacted by the changes. This included an online survey of registered medical practitioners (RMPs) and nurses, alongside semi-structured interviews with a sample of 15 clinicians, 13 applicants and their carers/representatives and 20 support workers who had experience of supporting people to make applications. The research was underpinned by a logic model and was built around the policy principles of SRTI and their anticipated short-, medium-, and long-term outcomes (attached as Annex 1, Appendix A).

Research caveats

As with all qualitative work, where the numbers of participants are relatively small and where participation is on a self-selection basis, there will be inherent bias in the findings presented below. While attempts were made in the recruitment process to sample a wide range of different views from professionals and those living with terminal illnesses in different geographical areas, with different demographics and different life circumstances, the findings are nonetheless not fully representative. This should be borne in mind when interpreting the findings below, and caution should be taken not to generalise the findings too far. Further caveats are listed in the Main Report attached as Annex 1. These do not, however, diminish the considerable value and importance of the feedback that was shared.