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

Awareness of SRTI in Scotland

Awareness and understanding of the terminal illness definition

Among clinicians, awareness and understanding of the new terminal illness definition was mixed. Just under two thirds of clinician survey respondents indicated that the definition was either clear or very clear, however, just under one third felt it was not. Interview data suggested that nurses were clearer overall compared to RMPs. Even where the definition was understood, some were supportive of the change, and some were not. Those who supported the definition felt that it provided additional flexibility for practitioners in assessing eligibility:

“I think it’s been left - maybe that’s the wrong word - but I think it’s been left open enough, so you can interpret as you need to interpret it. I think it’s a better way of doing it.” (GP)

Others noted that they found the definition vague or difficult to understand:

“And their desperate attempts to try and avoid excluding anybody who might possibly benefit from it just left it incredibly vague and is still vague, you know.” (GP)

There were mixed views on the removal of the 12-month life expectancy timeframe - several clinicians felt that this added unnecessary confusion to a system that had previously worked well, while others felt this gave the flexibility required to accommodate a fuller range of illnesses/conditions. Specific challenges included:

• the absence of clear guidance around what kinds of conditions the definition may relate to;
• the fact that new treatments were becoming available on a regular basis which may prolong life/make some conditions highly unpredictable; and
• certain neurodegenerative conditions being hard to diagnose.

Differences in awareness among populations of interest

In comparison to clinicians, support workers were well versed on the new definition, most likely as a consequence of their more regular interaction with the benefits system. They were also more likely to welcome removal of the 12-month rule, as this opened up accessibility to a wider group (especially those living with long term non-curative conditions). Specialist nurses working with specific populations of terminally ill adults on a regular basis appeared to have greatest awareness overall. Clients were also generally supportive of the removal of the 12-month life expectancy criteria. Overall, however, interviews with clients and feedback from support workers suggest that the terminal illness definition was not well understood by the wider public.

Understanding and awareness of the benefits system

Clients generally had a poor awareness and understanding of the SRTI process, and indeed the benefit system as a whole. Many lacked awareness of the difference between Social Security Scotland and DWP and often named the two interchangeably in discussions when referring to just one organisation.

Eligibility under Special Rules

Clinicians reported that most patients were unaware of their eligibility at the time of their diagnosis or in the period before they became unwell. There were also very mixed experiences with regards to the timing and source of signposting.

Further, there was a clear difference between the referral routes noted for those living with conditions that undisputedly met the special rules criteria (e.g. terminal cancer and MND) and those where there was more ambiguity (e.g. Alzheimer’s, Parkinson’s or heart conditions). For conditions with a less clear prognosis, the referral routes were also less clear with fewer formal processes in place.

There were reservations, especially among GPs and nurses, about who would/should be eligible where conditions were non-curative but where a patient might be expected to live for longer periods, as well as cases where there was a long ante-ceding period before diagnosis and/or for fluctuating conditions.

A key misconception for some clients had been whether they were eligible based on their financial situation, with many perceiving that if they were financially sound, this would preclude them from receiving either ADP or PADP:

“I’d never been on benefits before and having no experience of the system, I didn’t know or didn’t think…I obviously wasn’t working cos I was off sick, but I was receiving a wage and I just assumed that they would be means-tested. I just didn’t know. It didn’t occur to me, to be honest with you, for that year and a half that I might have been entitled to something, some help.” (Client, Special Rules)

The main issues linked to understanding eligibility among clients were the absence of being signposted early on/at relevant junctures by professionals, a lack of understanding around which conditions/illnesses may be in scope, and misconceptions that assistance under special rules was means tested. Participants encouraged more proactive guidance/advice in all respects.

Understanding and communicating the process

When reflecting on the BASRiS process as a whole (including the BASRiS form and CMO’s guidance), just under half of clinicians said the overall process was either clear or very clear, while a third said it was either unclear or very unclear. Clinicians’ levels of confidence were also mixed with regards to both: talking to patients (or their representatives) about the financial support that they are entitled to under special rules; and signposting terminally ill individuals (or their representatives) to Social Security Scotland. Slightly less than half of clinicians who were surveyed were either very or fairly confident that they were correctly following the BASRiS process, while just over a third were either only slightly confident or were not confident at all.

Key takeaways

Overall, based on both survey and interview feedback, the terminal illness definition (including removal of the 12-month life expectancy time frame), the BASRiS form and submission process, and eligibility (particularly for certain conditions) do not appear to be well understood by either RMPs or clients. There is, however, better understanding and confidence among specialist nurses and those working in support roles, especially in organisations where patient eligibility for SRTI is more clear cut. This may, of course, be a consequence of those in the latter roles having greater exposure to people who may be eligible, and having more experience or responsibility for benefits advice and supporting applications, but the findings nonetheless point towards there being scope for more awareness raising and confidence building among some groups. The need for clearer messaging regarding the non-means tested nature of benefits assistance under special rules also seems key, as this may be a current barrier to some eligible patients applying. Similarly, raising awareness of the full range of conditions, illnesses and diseases which fall within the scope of the new terminal illness definition may be required across all populations of interest (including, for example, more complex conditions such as neurodegenerative conditions and those which can progress more slowly but are still considered terminal).