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

The application process and outcomes

The BASRiS form

Among survey respondents, when asked specifically about the BASRiS form:

• two thirds agreed that they knew where to access the BASRiS forms;
• just over half agreed that they knew where/who to submit the BASRiS form to on completion;
• the most popular method for return was to digitally complete the form via the editable pdf and email it to Social Security Scotland;
• there was a relatively even split between the proportions who agreed and disagreed that they were familiar with the different formats/methods of returning the BASRiS forms; and
• more than half disagreed that they understood what to do when a terminally ill patient requires both a BASRiS form and an SR1/DS1500 form.

In interviews, there was also some negative feedback from clinicians on the BASRiS form in general, including comments linked to how unwieldy it was perceived to be and how long it took to complete (although this was not unanimous):

“If the form was more straightforward to use I might actually use it more. The work the form produces I would expect makes GPs avoid suggesting it and therefore completing it. It would not surprise me if there were less forms being done compared to the DS1500 as a result of the changes.” (GP)

While some clinicians expressed a preference for the legacy DS1500 and SR1 forms used by DWP (because they perceived they were simpler to fill in) other practitioners (especially nurse specialists) said that they preferred the BASRiS because it allowed them to provide more information/context regarding the patient.

Most medical practitioners expressed a preference for online or editable PDF copies of the BASRiS form over paper copies (because they were accessible, easy to locate, and easier to share compared to paper copies). Support workers also commented that they welcomed electronic copies being available for sharing as this meant that that could also submit a BASRiS on behalf of the clinician and client.

Some support workers suggested the need for more options on the special rules application form regarding how a BASRiS could/would be submitted (as current options were too restrictive/limited). Organisations that were not on the ‘allow list’^[1] also noted that not being able to submit a BASRiS directly could prolong the process in some cases.

The SR1, DS1500 and legacy forms from DWP

There were clear differences across interviewees and survey respondents with regards to the BASRiS, SR1 and DS1500 medical forms, and understanding the differences between them and when one or the other would be needed:

“It is really not clear to me when to use BASRiS or SR1. I am relying on practice manager or someone else to tell me. I phoned for advice but received two different replies. Different areas of Scotland so different things. Having the phased roll out was confusing. It's not clear what to do in event of e.g. universal credit.” (RMP, Clinician Survey)

“I think medical staff, in my opinion, seem to be a bit more certain about filling in an SR1. A BASRiS, they’re always saying to me, “Is there not a time limit on that?” It’s actually in a way backfired. It’s actually, in my opinion, it causes a bit of confusion for medical people, I think.” (Support Worker)

While clinicians were mainly using the SR1 and/or DS1500 in cases where they were required by DWP, just over a quarter were doing so because they were more familiar/experienced with these forms, and just under a quarter said these forms were easier/more convenient to complete.

There was also a notable lack of clarity among clients regarding medical forms, including the BASRiS, SR1 and DS1500. Almost all reported that these were unfamiliar terms for them. Support workers confirmed that patients would be unlikely to know and understand the differences, especially where the application process was managed by others:

“I think probably they don’t even realise half of what gets done…if I get a BASRiS and I do the application and they get the money, I always get an email or a phone call or a wee pop in later on to thank me. They can’t believe I’ve done it all for them…Once I’ve got the form over, but it’s minimal information that’s needed and it just makes things so much easier. But they don’t know that. They think I’m still probably filling in a great big form…” (Support Worker)

Overall, while support workers had good awareness, clinician understanding was mixed, and clients had very little understanding of the different forms.

Support (and absence of support) for applications

Those who had received support from either nurse specialists or organisations that had dedicated benefits advice workers tended to find the application process the easiest. Those who had made use of the assistance offered by Social Security Scotland also reported positive experiences, particularly around providing evidence in relation to their disabilities/change in capacity and how that may manifest itself in daily life. Importantly, however, not everyone was aware that Social Security Scotland was available to help with their applications, and this is something that would have been welcomed for some applicants who had attempted to apply themselves, including those whose applications had been unsuccessful.

Those who had attempted to apply for benefits assistance by themselves (either under normal or special rules), explained that they found the process very challenging and time consuming, especially the application form. The single biggest issue for normal rules applications was length/complexity of the application form.

Application routes, formats and questions asked

Across the research, views were sought on why some people may submit a normal rules application, even where special rules would be relevant. The main reasons that were suggested (based on a combination of participant experience and/or speculation) were a lack of understanding/awareness of different routes among the general public and some people simply not perceiving themselves as terminal.

Several clients had completed paper-based forms and others had submitted digital forms with assistance from support workers. The main feedback in relation to application forms, however, came from those who had submitted normal rules applications rather than special rules applications (because in most cases almost all paperwork and administration for special rules cases had been handled by support workers with very minimal input required by clients themselves). Where feedback on special rules applications was given by clients, they were mainly impressed by how quick the process had been, the positive outcome/decision, and the speed of receipt of their first payments.

Timescales for applications and receipt of benefits

There were very mixed views from clients on the length of time taken for applications to be processed. This was related to the application route taken (i.e. those who went through the SRTI route tended to report that it had been quicker than those using the normal route), and whether the individual had been supported.

For those working with benefits advisors in services such as Macmillan, Marie Curie or Maggie’s the process was typically efficient, quick and non-problematic:

“The BASRiS team definitely seem to be on the ball for both ADP and PADP. I mean, literally it’s within - I would say within 10 days most people have got their first payment into their bank account, which is just brilliant.” (Support Worker)

“Honestly, when it’s a Special Rules straightforward brand new claim, and I’ve done however many in the last 16 or so months, and I’ve not - never had to go back and chase anything up. It’s 100% fool proof.” (Support Worker)

For those working with more generic and non-medical focussed charities, including those that worked with minority groups to offer wider community-based support, there were reports that the process for SRTI had been lengthier.

Transfers, recategorisations and changes in circumstances

Among applicants and their representatives who were interviewed, some were unsure of whether their cases had been transferred from DWP or recategorised following their terminal illness diagnosis, and often conflated DWP and Social Security Scotland, viewing them as the same organisation.

Most clinicians and support workers noted that there were no issues with recategorisations or reporting changes in circumstances (i.e. alerting Social Security Scotland that someone’s condition was now being classified as ‘terminal’). Some support workers perceived that transfers and recategorisations could result in it taking slightly longer for patients to receive the full entitlements compared to ‘new’ BASRiS applications, however, this was largely anecdotal.

Backdated payments and receiving maximum amounts

None of the clients interviewed had experienced any challenges with receiving backdated payments - all were satisfied that they had been paid quickly and appropriately. While some clinicians and support workers had doubts about which date was being used for the clinical judgement and if this was always the most relevant or appropriate date, there were no apparent complications with payments being made up to the maximum of 26 weeks before the application date (with only a couple of support workers noting instances of inconsistent practices regarding backdating beyond what the guidance dictates).

All but two of the clients who took part reported that they were in receipt of the highest rates, and there were no issues in that regard. Support workers did also note, however, that many clients were often unaware of the level of payment that they could receive or were entitled to.

Future reviews and appeals

The principle of no future reviews was welcomed by all who were aware of it, although not everyone was clear that this was the case in their own circumstance. The main reservation raised mainly by clinicians was what would happen in cases where someone awarded ADP, CDP or PADP made significant unexpected improvements in their health, or a new treatment became available to change their prognosis. Clinicians queried who would have responsibility for reporting a positive change in circumstances, i.e. the patient themselves, the clinician who signed the BASRiS, or the support worker who completed the application form. There was no substantive feedback given regarding appeals in special rules cases.

Barriers to applying for eligible benefits

Barriers reported by clients to applying for benefits assistance included wishing to retain independence/not being reliant on state support, as well as misconceptions that people would be ineligible if they remained in employment. Stigma was cited as something that may act as a particular deterrent to some older people in applying for benefits:

“It’s still a bit of a stigma with a lot of older people who have prided themselves in working all their adult life.” (Client Representative, Special Rules)

Clients also expressed concern around how accessing benefits may impact on their family/loved ones after their death (including needing to notify Social Security Scotland of the death and any ‘wrongful’ awards needing to be paid back).

Some clinicians also highlighted reluctance to apply based on perceptions that the process would be lengthy, arduous and require answering a lot of personal health-related and financial questions. There were also reports that patients who were financially stable or considered themselves to be “well off” (including those with pensions) often declined to pursue disability assistance.

Key takeaways

Overall, there was mixed feedback on the medical forms required to assist benefits applications and while some clinicians were familiar and comfortable with the BASRiS form, others were not. The editable PDF version of the BASRiS was particularly welcomed as being accessible and was the preferred format among clinicians (with support workers also noting that online and PDF versions were easier to share among professionals). There was also some confusion (notably but not unanimously among RMPs compared to RNs) regarding when the BASRiS and/or SR1/DS1500 would be required. Clients too had very poor understanding of the different forms and sources of evidence that had been required to facilitate their applications, but some of this seems to have been accounted for by the fact that most had been assisted in their applications by third parties who oversaw much of the administration. Those who received support with their applications were more likely to have had a positive experience and were also more likely to have gone through the special rules route (with interview feedback suggesting, however, that not everyone was aware of the range of support available to them either from Social Security Scotland or more widely in the community). Client confusion was also compounded in many cases by people trying to navigate the system at a time when they/their family members were unwell. For clients who had pursued normal rules applications and had been either transferred or recategorised, there was some negative feedback on the length and complexity of the normal rules application process. Although based on a small sample for the current research, the fact that several clients had been transferred/recategorised who could/should have applied through special rules also suggests that further clarification and awareness raising around eligibility for the special rules route may be required. The timescales for those using the special rules approach appeared to be fast and there were no reported problems with either people being awarded the highest rates available, receiving their payments on time or receiving accurate back payments. The principle of no future reviews for those awarded benefits under special rules was also praised by both clients and supporters. The main perceived barriers to clients applying for benefits under special rules appear to be misconceptions that these benefits are means tested, as well as some confusion around eligibility based on diagnosis and the point someone is at in their terminal illness journey.