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

Impacts and outcomes of SRTI

Impacts for applicants and recipients

The main positive impacts reported by clients were:

• a general increase in their household income, which in turn supported their wider wellbeing;
• a reduction in financial stress or pressure, with several clients reporting an increase in their peace of mind; and
• feeling “grateful” for the financial support received which was helping to maintain or improve quality of life:

“I just think, to have that bit peace of mind, it’s one less worry. That’s probably the best way I could put it - it’s one less worry.” (Client, Special Rules)

“I suppose supported’s maybe not the word I would use. I am very grateful, you know, for the money that they are giving to me…the extra money that I get is very valuable, you know, and does help me to, you know, to maintain a sort of quality of life.” (Client, Normal Rules, Transferred)

Support workers also agreed that removing the need for lengthy normal rules applications, and allowing BASRiS forms to be submitted by support agencies on someone’s behalf helped massively to reduce the emotional and practical burdens experienced by families at a very difficult time:

“They’re already trying to make decisions about Wills, Power of Attorneys, what they’re going to do life wise and what are they going to do treatment wise and how this going to impact them in so many ways. So, it’s just one thing that’s taken away from them and it just makes life so much easier for them.” (Support Worker)

On a practical level, several respondents also mentioned that a successful application for ADP/PADP under special rules had acted as a passport to allow them to access additional support in the community (including making household adaptations, getting community alarms, accessing Blue Badges and mobility aids.)

Impacts for clinicians

BASRiS form completion was not adding significantly to the workloads of clinical staff, mainly because they were not needing to complete them on a regular basis/complete a high number. Comments were also made, however, that if they had to complete the forms more often or for a larger number of patients, this would indeed have negative consequences for workloads. Most clinical respondents spoke of feeling that any marginal increase in workload was also mitigated and justified by the potential benefits for those they were assisting.

While there were few complaints regarding workloads, there was nonetheless also some reflection that the system could perhaps be even more streamlined. This included suggestions that the system could be automated in cases where people receive a diagnosis confirming that they are living with certain eligible conditions.

For clinicians, perhaps the main impact had been an increase in autonomy when determining eligibility, but this came with what many described as an increase in responsibility and accountability which was not always comfortable or welcomed:

“I don’t think it’s [the BASRiS process] confusing. I think it’s made it quite clear. The problem now is that we are having to justify our position much more…I don’t know who is making the final decision but that sounds like you’re trying to convince someone of your final decision and that was not the experience of the DS1500, I would say.” (GP)

There was mixed feedback on whether SRTI policy was positively or negatively impacting clinicians’ relationships with patients and their families. Some felt that the removal of the 12 month life expectancy had helped to improve their communications with patients, while others felt that the new flexibility it afforded had made relationships strained in some cases (i.e. where the clinician shared a different view around eligibility compared to the patients and their loved ones).

Impacts for support workers

For support workers, one of the biggest impacts was on the discussions that they were now having with applicants/patients regarding their eligibility. Most felt that the removal of the 12-month life expectancy in Scotland made conversations easier with patients compared to the legacy DWP rules:

“It was harder because you had to recognise them [the patient] as being in the last year of life. Whereas this, it’s been easier to sort of explain to the patients “Obviously we don’t know when your last days are going to be, but you will benefit from this for however long you have left and it will boost your quality of life essentially”, in the fact that you will get enhanced payments. But also, that they’re not having the worry of being reassessed and things like that as well when they’ve got so much else to juggle.” (Nurse Specialist)

Support workers also reported needing to provide more information, support and clarification to their clinical colleagues since the new rules had been introduced.

Impacts on perceptions of Social Security Scotland

While most support workers and many nurses felt that positive client/patient experiences had resulted in greater trust of Social Security Scotland and the benefits system, there was also evidence of:

• a weakening of trust (for some clinicians) who felt that the current system was more obscure than legacy systems;
• some negative perceptions linked to unsuccessful applications or lengthy/protracted normal rules applications (which preceded a successful award under special rules); and
• some applicants perceiving that they might not be believed by Social Security Scotland when making applications/feeling a need to justify their eligibility.

While there was consensus that the new rules were assisting both in reaching more patients and benefitting them more quickly, the absence of earlier signposting had some negative impacts on some people’s trust in the system as a whole:

“Not knowing about it sooner and not doing anything about it sooner…It needs to be made clear to people who receive a terminal diagnosis that they may be entitled to things.” (Client, Special Rules)

There were some concerns among clinicians and support workers that (given the reliance on nurse specialists and support organisations for helping people with their applications), only those who sought financial or other support would be picked up:

“They don’t see themselves as disabled even though the condition that they’ve got is actually only going to progress and progress and progress and, because they’re not ill at this point in time, they haven’t approached any services.” (Support Worker)

Several support workers also commented that they disliked the language of ‘terminal’ being used in communications from Social Security Scotland and argued for alternatives (e.g. ‘non-curative’, ‘non-treatable’ or ‘treatable but incurable’). Use of the term ‘special rules’ was also discouraged for being potentially confusing.

Key takeaways

A number of key impacts were reported across the research. For clients, greater financial support was important, which in turn was leading to both practical gains (in terms of access to wider supports and entitlements) and emotional gains (especially peace of mind, improved independence, feelings of being in control and ensuring/maintaining quality of life). For clinicians, there was a view that the BASRiS form completion did not significantly impact on workload (especially for those working with small numbers of terminally ill patients), however, this was not always the case. Among clinicians there does, however, appear to be a significant impact on feelings of increased autonomy, responsibility and accountability linked to the new SRTI process, which not all clinicians were comfortable with or felt prepared for. Among support organisation staff, the changes to the SRTI process were seen as largely positive in enabling them to facilitate easier and quicker access to financial support for more clients. However, there were views that there was still scope to reach even more eligible adults, especially those who do not regularly or proactively engage with community services (including those living with long term, neurodegenerative and/or life limiting conditions). Ensuring awareness among adults already receiving lower levels of disability payments before the SRTI rules were introduced and who may be eligible for recategorisation under SRTI was also raised as a concern.