Disability benefits evaluation: Special Rules for Terminal Illness in the context of the devolved disability benefits

Findings

This chapter explores evidence from the data sources described in the methodology chapter to evaluate progress towards the short-, medium- and long-term policy outcomes. Where there is overlap between different outcomes, to avoid duplication of evidence, signposting will be used to direct readers to appropriate sections of the report, rather than repeating the information.

Short-Term Process Outcomes

Is guidance (including signposting) for clients clear and easily understood?

The most recent statistics on ADP applications, in Table 1 below, show that of the cases eligible under the special rules, 6,340 (83%) were received with a Special Rules for Terminal Illness application form or a part 1 form only, and 1,340 (17%) were received with both a part 1 and part 2 form. This means that 17% of SRTI applications came in under standard rules.

Table 1: ADP SRTI applications

Processing time by month	Total applications processed	Median average processing time in working days
Total	7,675	2
SRTI Application form or Part 1 only	6,340	2
With Part 2	1,340	45
Percentage of Total Applications Processed	2%	n/a
SRTI Application form or Part 1 only percentage	83%	n/a
With Part 2 percentage	17%	n/a

Generally, most Client Satisfaction Survey 2024-25 respondents who applied for ADP or CDP were positive about the information on the Social Security Scotland and mygov.scot websites:

• 68% agreed or strongly agreed that it was easy to navigate the website(s)
• 70% agreed or strongly agreed that the information was easy to understand
• 61% agreed or strongly agreed that the information made it clear whether I was eligible or not

In the qualitative research, clients did not speak about the guidance directly, but rather about issues they faced through their experiences. In most cases almost all paperwork and administration for SRTI cases had been handled by support workers with very minimal input required by clients themselves. Nonetheless, these findings provide an insight into areas of guidance that would be most helpful to have or improve.

The main issues linked to understanding eligibility among clients were the absence of being signposted early on by professionals (including RMPs), 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 guidance being proactively offered by Social Security Scotland in all three respects. It is therefore difficult to assess how clear or easily understood the existing public-facing guidance is by clients.

Is the application form clear and easily understood?

The majority of clients who took part in the research received help with the application from support organisations, so had no direct experience of the form.

Client Satisfaction Survey respondents who applied for ADP or CDP were asked the extent to which they agreed that the application process was clear and, overall, 70% of clients (68% of ADP clients, 91% CDP clients) agreed or strongly agreed. Those who had had a successful outcome were doubly more likely than those who had had an unsuccessful outcome to agree or agree strongly (85% vs. 42%).

The main feedback from the qualitative research in relation to application forms came from those who had submitted standard rules applications rather than SRTI applications. As with the guidance, this is because in most cases almost all paperwork and administration for SRTI cases had been handled by support workers with very minimal input required by clients themselves. Many of the clients who participated in the research and had applied through special rules did so with help from dedicated support staff who are much more likely to be familiar with the forms and be able to easily complete them.

Although not directly related to the outcomes for the SRTI application form, it is worth noting that the standard rules application form was not well understood by clients taking part in the research: it was perceived to be lengthy and intrusive.

Where feedback on SRTI applications was given by clients, this mainly included comments that they were impressed by how quick the process had been, and about the positive outcome/decision and the speed of receipt of their first payments.

However, in some cases, even some who had been supported in their applications had found it challenging, but this was reported mainly by those for whom English was not their first language (and where they had not used Social Security Scotland’s dedicated alternative language options). As one respondent, who was supported by a community-based charity worker, explained:

“So, there is a lot of questions. It’s not easy like…She ask for like a lot of evidence. And she - like they ask her like for many times, not once…lots of different evidence, she needed lots of questions.”

(Client, Special Rules)

A small number of support workers who were often working with both terminally ill patients under special rules and non-terminally ill patients under standard rules commented that they also preferred electronic forms for standard applications:

“If I’ve got a BASRiS, I tend to do the online ADP or the online PADP forms. I just find them so easy and so quick and, you know, you can download a copy of it afterwards and everything, so they’re great…and if it’s a long form, if it’s the sort of standard form, I’ve got the electronic copies that they’ve supplied, so I tend to complete them and I just type them out and then print them off and send them away.”

(Support Worker)

Application format

There was some evidence across the sample that paper-based forms were preferred by those applying directly, mainly because it was felt this allowed the opportunity to reflect on questions and answers slowly and to easily share the form or show it to others to ask for their feedback, comments and suggestions for how the form could/should be completed. Some support services also commented that older adults preferred to use paper forms either because of digital literacy/IT access issues or because they were mistrusting of telephone/online formats and the need to share personal data in what they perceived was an unsecure way:

“We’re finding that especially older people for PADP are really, really reluctant to give us their bank details over the phone, which is understandable. So, what we tend to do is we phone up and we’ll say, well we can send a letter out to you or we can offer you a home visit or if you’re coming in to clinic or we’ll send you an email and that way that kind of reassures them that we are who we say we are. But it’s holding up a lot. So, the only way round that is for us to tick, don’t have a bank account. And at that point then, the local delivery team get in contact and quite often that warrants a home visit, so it’s just a protracted thing.”

(Support Worker)

A small number of support workers also commented that they advised clients against applying by telephone, and also did not do so themselves, due to the waiting times that they were likely to encounter:

“We tend to avoid asking anybody to make phone claims now because of the waiting times for the call to be answered. We would never direct anybody to make a Special Rules claim because there isn’t a dedicated Special Rules option, so you can have somebody waiting on a phone for an hour and a half before they actually speak to somebody to do a Special Rules claim.”

(Support Worker)

“Myself and the team feel that the Special Rules application for ADP is relatively straightforward online. Trying to get through on the phone is an entirely different matter but we generally don’t even try to get through.”

(Support Worker)

Are advisors aware of and understand SRTI process, and do they communicate this to terminally ill individuals (or their representatives)?

Advisors working with those living with conditions such as terminal cancer, MND and other obviously life-limiting non-curative conditions appear to be aware of and understand the SRTI process and are communicating this clearly to individuals and their representatives.

Challenges faced with recruitment for the commissioned research suggest that advisors working in more generic capacities and/or those working with conditions (and often longer-term conditions) where SRTI eligibility is less obvious, appear to be confused about the Scottish terminal illness definition and criteria for eligibility, and may not therefore be advising people appropriately.

This was especially true for support organisations and medical professionals working with adults with long term, neurodegenerative and/or life limiting conditions where there were misconceptions around whether SRTI may apply. This meant that some support organisations who were approached by KSO to take part in the commissioned work, and who were asked to share the research invitation with their service users or members, did not engage because they wrongly perceived that they were out of scope. Many charities approached were also UK wide and, when contacted by the contractor, showed little or no awareness of the Scottish legislation on SRTI.

The qualitative interviews showed that 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). Indeed, where nurse specialists were in post to support specific conditions or illnesses, they often acted as a direct referral mechanism to support services or benefits advisors. For conditions with a less clear prognosis, and where consultants, GPs or other medical professionals were the main points of contact, the referral routes were less clear and sometimes non-existent.

Similarly, charities and organisations who directly employ benefits advice workers were likely to be able to ensure that eligible patients can access the benefits they are entitled to. Many organisations that support individuals living with terminal or life limiting conditions reported during recruitment efforts that they did not have people working in such roles and as such could provide signposting only (with signposting usually being directly to Social Security Scotland or services such as Citizens Advice).

There was some evidence from RMPs that a reluctance to fill in forms may mean that not all eligible patients were being appropriately signposted:

“I would say the direct effect on GP workload is not good. It takes us away from other roles where we could be, I think, using our skills much more effectively…if we were to suggest the form to every patient that we have that will be eligible, we would be absolutely hammered with workload. We would be talking hundreds of these forms and there would be - I think that would be a great waste of resources and would include a massive number of patients in this, but it is probably not for primary care to do or we’d get nothing else done.”

(GP)

This self-reported reluctance corroborated views from support workers who perceived that some RMPs were reluctant to complete the necessary paperwork and that this may be one reason why not all eligible patients were being signposted to or made aware of their entitlements at the earliest point possible in their terminal illness journey.

GPs reported they were less likely than nurses to make people aware of their eligibility under special rules and often only completed a BASRiS form if a patient had been advised to ask their GP to provide it:

“More often than not, we’re not the people who start this…we’re sometimes often not asked directly by the hospital, but patients are told to ask their GP to fill it in because, if asked directly, that might be routine. So, often patients are told, see your GP about getting the DS1500 or BASRiS done.”

(GP)

Among those interviewed, only one client had been made aware of their possible eligibility through a GP or RMP, all others had been advised either by a nurse specialist, a benefits advisor, charity/third sector support organisation worker or by family/friends/colleagues.

One client explained that, despite having repeated contact with the NHS over a long period of time due to the nature of their condition, the support service was the first to alert them to their potential eligibility for disability benefits:

“...it was my case worker who told me and introduced the Social Security of Scotland, and I was referred from [them] and they filled in the forms for me…No one from NHS has told me anything about such a service and such a benefit.”

(Client, Special Rules)

Another client who had also been in contact with numerous medical professionals over a period of over 12 months explained that her queries regarding financial support had also not been met with useful responses:

“I did mention it to one of my doctors and he kind of shrugged it off.”

(Client, Special Rules)

As part of the clinician survey, respondents were asked about their level of confidence in communicating SRTI to patients or their representatives.

Table 2: Clinician confidence in communicating SRTI (clinician survey)

Question	Very Confident	Fairly Confident	Somewhat Confident	Slightly Confident	Not Confident At All	Total
a) Talking to patients (or their representatives) about the financial support that they are entitled to under special rules?	14%	22%	21%	15%	28%	94
b) Signposting terminally ill individuals (or their representatives) to Social Security Scotland?	21%	21%	19%	17%	21%	94

Levels of confidence were largely mixed, with a third 36% (n=34) of respondents either very or fairly confident in talking to patients about financial support they may be eligible for under SRTI, and 43% (n=40) slightly confident or not at all confident in this regard. Similarly, 42% (n=40) of respondents were very or fairly confident in signposting terminally ill individuals to Social Security Scotland, while 38% (n=36) were only slightly confident or not confident at all.

Do eligible applications come in through the SRTI route?

The statistics (shown in Table 1 above) show that while 83% applications are clearly made via the SRTI route this is not always the case, with some applications still coming in through the standard rules route.

Reasons for applications through standard rules

To further explore the reasons behind the number of SRTI eligible applications that are submitted under standard rules, views were sought on why some people may submit a standard rules application, even where a special rules case 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 terminally ill:

“My own opinion would be it might just be lack of understanding of their diagnosis…the way the news is delivered, so you might have like a haematology patient who they’ll never - it will be non-curative but the aim is to manage for a durable remission. So, they might be saying, “Oh but I’m going to be getting chemotherapy, immunotherapy” and so they might go down the different route thinking, “I’m on treatment, we’re managing this”. I would think just a misunderstanding of their diagnosis and prognosis maybe.”

(Support Worker)

Support workers who had direct experience of this confirmed that those most likely to apply under standard rules, where a special rules application would have been appropriate, were those who approached the process alone, suggesting that there was a lack of awareness and signposting for these clients. Several support workers who had come into contact with adults very late in their terminal illness journeys noted that people had gone through with a standard ADP application early in their illness, not knowing that the SRTI route was available.

Are applications which do not come in through the SRTI route identified and actioned quickly?

There was some evidence in the qualitative research to suggest that not all applications from terminally ill people submitted via standard routes are quickly identified and actioned by Social Security Scotland as being relevant to SRTI. However, it is not possible to ascertain what was included in the applications in these instances.

There were some concerns that for those already living with long term conditions, especially neurodegenerative conditions, many may already be “in the system” and in receipt of lower levels of ADP. However, if they are not in contact with support services, they may be unaware that their status could be recategorised under special rules after receiving a terminal diagnosis. Even where individuals are in contact with support services, staff are required to remember or develop their own systems for checking whether retrospective applications can be updated, meaning some eligible individuals may fall through the gaps:

“It’s the worry that you then lose track of those people…Just checking that they are getting the maximum and, if they’re not, thinking, “Oh I need to do a BASRiS form for them actually”. They’re ones where, historically, we know they’ve got [a terminal condition] but that was before the BASRiS form came in and they didn’t qualify under the special rules previously to do a form for. So, there are some that are going to be retrospective that you sort of think, “Oh my God, actually, I don’t think that I’ve ever caught up with them as to whether they’re getting what they should be getting at that point”. So, I do worry there are people that are, you know, are falling through the net who might be eligible because they’re already in the system as it were.”

(Nurse Specialist)

Are payments and processing times in line with policy commitments for applications through the SRTI route?

Since March 2022, 7,675 SRTI applications for ADP have been processed. The median average processing times for applications made for clients eligible under the special rules since the launch of the Adult Disability Payment pilot in March 2022 is 2 working days^[5].

Since the launch of PADP in October 2024, there have been 1,920 applications by SRTI, and the median average processing time is 2 working days.^[6]

Client Satisfaction Survey respondents who applied for ADP or CDP were asked to what extent they agreed that their application(s) was/ (were) handled within a reasonable time frame. Overall, 64% of respondents agreed or strongly agreed.

The majority of support workers who applied on behalf of clients through the SRTI route reported that the process had been quicker than those using the standard route.

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)

All but two of the clients who took part reported that they were in receipt of the highest rates they were eligible for, and there were no issues identified by clients 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.

There were also no issues raised across the qualitative research in relation to frequency of payments, with clients reporting that these were prompt and support workers noting that many welcomed the weekly as opposed to monthly payments under BASRiS. Some additional work was often required from support workers to explain to clients the reasons why payments were now made weekly instead of monthly, as this was described as sometimes being unclear for recipients. Overall, however, weekly payments were welcomed.

None of the clients interviewed had experienced any challenges with receiving backdated payments - all were satisfied that they had been paid appropriately. However, some were unclear of the difference between the ‘date of clinical judgement’ and the ‘date of their application’ and could not be 100% sure which date had been used in calculating their backdated entitlements.

One respondent, who typified others’ general experiences, described how they had received a letter to confirm that they would receive the payments, and was given the date when the payments would be made to their account, and the money was paid within a few days:

“I received the letter on the Wednesday one week, and the money was paid into my account the following Monday.”

(Client, Special Rules)

Is the SRTI process clear and easy for clinicians?

Below the evidence is presented on several different aspects: definition, eligibility, CMO guidance, legal obligations, information sharing and consent, workload, BASRiS format, contact, and suggestions for streamlining.

Definition

Clinical survey respondents were asked the extent to which they were clear on the terminal illness definition in Scotland. Most respondents (61%, n=57) indicated that the definition was either clear or very clear. Conversely, 28% (n=27) felt the definition was either unclear or very unclear.

There were differing opinions on the change to the definition. Those who supported the definition felt that it provided additional flexibility for practitioners in assessing eligibility and gave the flexibility required to accommodate a fuller range of illnesses/conditions.

“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)

However, several clinicians felt that this added unnecessary confusion to a system that had previously worked well, with specific challenges including:

• 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
• certain neurodegenerative conditions being hard to diagnose

Eligibility

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.

CMO guidance

Overall, there were mixed views in relation to how accessible the CMO’s guidance was, as well as some clinicians simply not knowing that updated guidance was available. Further, the guidance does not appear to be well utilised (or used regularly) and this is linked mainly to perceptions that it is too lengthy and/or not necessary to help guide decisions (with some practitioners preferring to rely on their own professional expertise and experience to guide decisions instead of referring to what was seen as sometimes confusing or ambiguous advice given in the guidance).

All respondents to the clinicians’ survey were asked if they knew where to access the most up to date version of the CMO’s guidance (before taking part in the survey). Over a third (39%, n=37) said that they did, while around half (49%, n=46) said they did not. The remaining respondents (12%, n=11) were unsure.

Survey respondents were also asked if they had personally referred to the CMO’s guidance since it was updated in December 2023. Responses were relatively evenly split between those who had (45%, n=42) and those who had not (47%, n=44). The remaining eight respondents (8%) were unsure.

Around three quarters of the survey respondents (76%, n=32) felt that the CMO’s guidance was either clear or very clear, while 14% (n=6) felt it was unclear (four of whom were RMPs). Similarly, just over three quarters of survey respondents (77.5%, n=31) said the CMO’s guidance was either helpful or very helpful in assisting clinical judgments for terminally ill patients, compared to just two respondents (5%) who said it was unhelpful.

Legal obligations

Respondents to the clinician survey were also asked to rate their level of agreement in relation to how clear and actionable the legal obligations were.

Table 3: Legal obligations are clear and actionable (clinician survey)

Question	Strongly Agree	Agree	Neither	Disagree	Strongly Disagree	Total
a) To promptly complete a physical BASRiS form (either via paper, online, or editable pdf)?	19%	43%	12%	16%	10%	89
b) To apply the Scottish definition of terminal illness when making a clinical assessment?	28%	46%	8%	9%	9%	89
c) To keep a copy of the BASRiS form for the patient record?	24%	35%	14%	15%	12%	86
d) How a patient gives consent for Social Security Scotland to contact clinicians?	19%	29%	19%	25%	8%	84

Across all four legal obligations, the issue with the highest level of agreement in terms of being clear and actionable was “the need to apply the Scottish definition of terminal illness when making a clinical assessment” (where 74% (n=66) agreed compared to 18% (n=16) who disagreed). The issue with the lowest level of agreement (although still recording higher levels of agreement compared to disagreement) was “how a patient gives consent for Social Security Scotland to contact clinicians” (where 48% (n=40) agreed compared to 33% (n=28) that disagreed).

Few practitioners who took part in interviews were explicitly aware of their legal obligations under the CMO’s guidance, although most perceived that these were unlikely to differ significantly from what their standard professional practice or professional code of conduct would require of them (but were not sure):

“The question is, am I behaving professionally, which is a much higher standard.”

(GP)

“I would know that I would operate within the Code, you know, that all doctors would in terms of their professionalism and probity, etc. But other than that, I’m not clear on what other legal obligation would be.”

(Consultant)

Some also perceived that their legal obligations were restricted mainly to making accurate and honest decisions about the nature of someone’s condition and whether it met the CMO’s guidelines:

“I think it’s quite clear, you know. You’re making decisions on someone’s health, and I do follow the guidelines. I was asked to fill out a BASRiS form for someone else by the benefits lady who I’d referred for like the lower level of disability payment and she phoned me and said, can you do a BASRiS for this lady? And I said, no I can’t because, actually, she’s actually doing very well, she doesn’t need home care and she’s not as the guidelines say and I sort of quoted.”

(Nurse Specialist)

Information sharing and consent

All respondents to the clinician survey were asked to what extent the SRTI processes were clear with regards to a series of issues specifically related to information sharing and consent.

Table 4: Clarity of the SRTI process (clinician survey)

Question	Very Clear	Clear	Neither	Unclear	Very Unclear	Total
a) Who patient information can be shared with (including who within Social Security Scotland can access information)?	10%	30%	22%	28%	10%	82
b) When and in what circumstances information about a patient should be shared with Social Security Scotland?	11%	33%	22%	27%	8%	83
c) How information should be shared with Social Security Scotland (including digital and verbal information)?	11%	29%	23%	27%	11%	83
d) How a patient gives consent for Social Security Scotland to contact clinicians?	10%	24%	27%	30%	9%	82

Across each of the four issues, responses were split between those who felt the processes were clear or very clear and those who felt they were unclear or very unclear, as follows:

• Who patient information can be shared with: 40% (n=33) said this was clear while 38% (n=31) said it was unclear.
• When and in what circumstances information about a patient should be shared with Social Security Scotland: 43% (n=36) said this was clear while 35% (n=29) said it was unclear.
• How information should be shared with Social Security Scotland (including digital and verbal information): 40% (n=33) said this was clear while 37% (n=31) said it was unclear.
• How a patient gives consent for Social Security Scotland to contact clinicians: 34% (n=28) said this was clear while 39% (n=32) said it was unclear.

In contrast, when prompted in interviews, clinicians reported that they had few/no major concerns regarding data sharing. This difference may be accounted for by the different profiles and experiences of the overall interviewee sample compared to the survey sample but also may be due to the questions asked - while the survey asked about specific data sharing issues, interviewees were asked about data sharing in more general terms and respondents were free to highlight issues (if any) of greatest note to them. Most interviewees indicated that gaining consent from patients to share information as part of the BASRiS process was relatively straightforward and academic:

“I’ll say to them that I’m going to fill out this form for them and I ask for their consent to do that and to share it with different people. I tell them that when I fill out the form, it will get sent to Social Security Scotland and to the benefits person and to the GP practice and I’ll make sure that their information is confidential.”

(Nurse Specialist)

Several clinicians who were interviewed (both RMPs and RNs) stressed the importance of seeking consent as a means of providing context for award letters that patients may receive:

“Mostly, it’s fairly rare that I need to do one without their consent. I always try and get their consent and have that conversation, so that it puts it into context and it doesn’t come unexpectedly to them or they read something that they think, “Oh I didn’t realise…and does that mean [I will] just drop dead?”

(Nurse Specialist)

Several GPs in particular raised concerns around not wanting to complete BASRiS forms without the consent of the patient and without knowing that they had additional support in place to help them process any decision made by Social Security Scotland:

“You’re terrified that the patient’s going to get a letter from Social Security saying, we understand you’re now palliative, here is some money, which would obviously be horrific thing to happen to anybody…So, we always want to just check with the patient that they know what’s going on and they understand, you know, this is not, you know, it’s not a death sentence.”

(GP)

Clinicians indicated that only in very rare cases were BASRiS or SR1 forms completed without someone’s consent. In some cases, consent was sometimes taken as being implied rather than given directly, but this was only expressed in a minority of cases:

“If the patient has specifically said, don’t share my information with Social Security Scotland, one would not do that. The assumption is that if someone is asking for a fit note or a palliative care note, that they agree to share the information and I suppose it’s not signed for [i.e. written consent] but the assumption is that they’re agreeing, I suppose. Are there any issues about sharing it? I think best interest would say, you will share it, you won’t necessarily get permission…I think once someone is thought to be palliative and needs that form, the best interest is to get on and do it.”

(GP)

Overall, practitioners were confident that information shared between health, social security and local authority systems would always be secure and felt that information sharing protocols were clearly established and well tested.

Workload

For clinicians, there was a view that the BASRiS form completion did not notably impact on workload (especially for those working with small numbers of terminally ill patients), however, this was not always the case.

Respondents to the clinician survey who had completed a medical form (such as a BASRiS or SR1) or who had provided information to colleagues to support an application (n=90) were asked to what extent, if any, the requirement to complete BASRiS forms as per the CMO’s guidance had affected their workload (including, for example, the time taken to complete the BASRiS form, time spent liaising with others involved in the patient’s care, time spent liaising with Social Security Scotland). Just over half (53%, n=47) said this had increased their workload, while slightly less than half (45%, n=40) said there had been no change. Only two respondents (2%) said this had decreased their workload, and one respondent did not answer the question.

Table 5: Reported impact of BASRiS on clinician workloads (clinician survey)

Question	Number	Percentage
Increased Workload	47	53%
No Change	40	45%
Decreased Workload	2	2%
Total	89	100%

In interviews, most clinicians reported that the BASRiS form completion was not adding notably to the workloads of 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.

Some (but not all) perceived that the legacy forms (DS1500/SR1) took longer to complete than the BASRiS form:

“It’s much easier than the old version, you know, the kind of DS1500. It is much easier to complete and fill in. It’s not as time consuming. I think, before, there was lots of additional information that used to take ages to fill in. So, I would say that it’s been fairly speedy and I’m being honest - I have been more inclined to do it…I’ve been more inclined to prioritise it knowing it’s a quick job.”

(Consultant)

Some also felt that they would prefer to complete a BASRiS instead of having to provide more detailed written information or notes to support a standard rules application for terminally ill people. This reflects a misconception that terminally ill people have to use the standard rules application form, but highlights a further preference of the BASRiS.

Although some duplication of effort was mentioned in cases where people required both a BASRiS and an SR1, most still felt that this was manageable.

Most clinical respondents spoke of feeling that any marginal increase in workload was also mitigated and justified by the potential benefits to those they were assisting:

“It’s manageable and I think it’s critical to what we do. Our job is to just try and make the journey with [terminal illness] as manageable as possible for folk and pick up the things we can so that they don’t have to be burdened by them. And if that’s what it needs to be done to make that happen, then we’ll do it. As I say, I’d much rather do a BASRiS form than an ADP form.”

(Nurse Specialist)

Those most likely to note that the BASRiS process was adding to workloads were GPs and those working in non-specialist teams, for whom the lack of familiarity with someone’s specific history or circumstances meant that the task could be more onerous:

“You’re doing a formal assessment of a patient’s notes. Some of that is very complicated…you end up with a patient who’s had breast cancer, has had chemotherapy, has had surgery, had another round of chemotherapy, has had radiotherapy, maybe more surgery and you feel like you are trawling through oncology letters and treatment letters and breast letters trying to get all this information in. We never had to do that before.”

(GP)

Format of BASRiS

Respondents to the clinicians’ survey who reported that they had used the BASRiS in the last 12 months, were asked which methods they had used to complete it.

Table 6: Method of BASRiS completion (clinician survey)

Question	Number	Percentage
Digitally using the editable pdf and emailing it to Social Security Scotland	43	59%
Verbally (over the phone with Social Security Scotland staff)	20	27%
On paper and posting it to Social Security Scotland	19	26%
Online via the Scottish Wide Area Network (SWAN)	14	19%
Other	8	11%
Don’t know/unsure	2	3%
Total	73	100%

Among survey respondents, the most popular method was to digitally complete the form via the editable pdf and email it to Social Security Scotland (59%; n=43). Just over a quarter of respondents also had experience of completing the form verbally over the phone (27%, n=20) and/or completing the paper version and posting it to Social Security Scotland (26%, n=19). Those who indicated ‘other’ methods mainly said that they completed the editable PDF but sent it to other support services who were dealing with the application (e.g. benefits teams, etc.).

In interviews, most clinicians had also used email or digital systems to submit BASRiS or other medical forms. Most medical practitioners expressed a preference for online or editable PDF copies of the BASRiS form over paper copies. The online and PDF versions were perceived as accessible, easy to locate and easier to share compared to paper copies:

“I tend to use the editable PDF because then it’s easier for me to, as I said, attach the completed PDF and send it from the NHS Scotland email to the Social Security Scotland email. So there’s a sort of electronic track record. And actually, they’re pretty good at saying that they acknowledge safe receipt, so they get back to us fairly quickly.”

(Consultant)

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’^[7] also noted that not being able to submit a BASRiS directly could prolong the process in some cases.

BASRiS

All survey respondents (n=94) were asked to rate their level of agreement with a series of statements about the BASRiS form. The results are outlined in the table below.

Table 7: Agreement with statements about BASRiS (clinician survey)

Question	Strongly Agree	Agree	Neither	Disagree	Strongly Disagree	Total
a) I know where to access the BASRiS form(s)	36%	30%	7%	13%	14%	91
b) I am familiar with the different formats/methods of returning the BASRiS forms (e.g. paper, editable PDF, telephone and online webform)	19%	30%	8%	24%	20%	91
c) I know where/who to submit BASRiS forms to on completion	28%	30%	9%	17%	16%	89
d) I understand what to do when a terminally ill patient requires both a BASRiS form (for Social Security Scotland) and an SR1/DS1500 form (for Department for Work and Pensions)	12%	19%	9%	36%	24%	90

Overall, two thirds (66%, n=60) agreed that they knew where to access the BASRiS forms. However, just over a quarter (27%, n=25) disagreed, suggesting they did not.

Just over half of the respondents (58%, n=52) agreed that they knew where/who to submit the BASRiS form to on completion. Again however, a sizable proportion (33%, n=29) disagreed.

There was a relatively even split between the proportion of respondents who agreed (48%, n=44) and disagreed (44%, n=40) that they were familiar with the different formats/methods of returning the BASRiS forms.

At the last statement, 60% (n=54) of respondents disagreed that they understood what to do when a terminally ill patient requires both a BASRiS form and an SR1/DS1500 form. In this instance, just under one third (31%, n=28) agreed that they understood what to do in such circumstances.

Across the clinician interview sample, there was also some negative feedback given on the BASRiS form in general including comments linked to how unwieldy it was perceived to be and how long it took to complete:

“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)

“The BASRiS is a car crash. The DS1500, which we do on a fairly regular basis, is usually requested by other people or by the patient.”

(GP)

Some clinicians expressed a preference for the DS1500 and SR1 because they perceived they were simpler forms to fill in and that they did not have time in their capacity as medical professionals to source the information needed for a BASRiS:

“The DS1500 and the SR1 form is literally just a name and their NHS number and, what do you call it, your national insurance number. And then it asks for simple what’s the prognosis and we just put in CJD, prognosis 12 months or less and that’s it. But with the Scottish one, it was a bit more in-depth requirements, which is not huge. It’s just me being NHS staff and thinking, I’ve not got time…I’m sure if this was being completed by - I don’t know - a social worker or whoever’s job it is to do these things, it might not be that bad. We just don’t have time to refer to benefits and get them to do it cos it’s lengthy to get all that stuff, even as a fast-track.”

(Nurse Specialist)

This feedback was not unanimous, however, and other practitioners (especially nurse specialists) said that they preferred the BASRiS because it allowed them to provide more information/context regarding the patient:

“I like how it gives you instructions with the BASRiS that makes you think about what you’re writing in about how the illness has impacted on their lives. I probably put more information on the form now than I did on a DS1500 cos the box on the DS1500 was just like one or two questions and there was only a tiny little box. It was always a paper one, so there wasn’t much room for putting a lot of information on.”

(Nurse Specialist)

“I think when it first came out, we were a bit lost cos we used to do DS1500 which were fairly straightforward. BASRiS obviously, when they first came out, there was a lot more information needed and so that took us a wee while to kind of get our heads round. But now, we’ve been doing it that long and we do so many, that it’s not a problem.”

(Nurse Specialist)

Communication with Social Security Scotland

Respondents who completed the clinician survey were asked if they had been contacted directly by Social Security Scotland in the last 12 months for information required on a BASRiS. Just over half (53%, n=50) said they had, while just under half (44%, n=41) said they had not. The remaining three respondents could not remember.

Those respondents who had been contacted by Social Security Scotland were asked how often they had followed up this contact by submitting a physical BASRiS form directly to Social Security Scotland.

Table 8: Followed up by submitting a BASRiS (clinician survey)

Question	Number	Percentage
In all cases	10	20%
In most cases	3	6%
In some cases	7	14%
In very few cases	10	20%
Never	16	32%
Other	2	4%
Don’t know/unsure	2	4%
Total	50	100%

Just over half of these respondents (52%, n=26) indicated that they had either never followed up this contact by submitting a BASRiS form or had done so only in a very few cases. Around a quarter (26%, n=13) had followed up by submitting a BASRiS in all or most cases. Those who indicated ‘other’ responses stated that the contact had been to confirm information already submitted on applications (such as dates) or noted that they provided BASRiS forms to other support organisations to assist with applications rather than submitting them directly to Social Security Scotland.

All survey respondents were also asked how they would prefer to be contacted by Social Security Scotland in relation to the BASRiS process (respondents were able to select more than one option). While preferences were mixed, most respondents (78%, n=73) said they would prefer to be contacted by email, over a quarter (29%, n=27) would prefer telephone, and 17% (n=16) would prefer letter. A few respondents (6%, n=6) said that they did not know.

Table 9: Preferred method of contact (clinician survey)

Question	Number	Percentage
Email	73	78%
Telephone	27	29%
Letter	16	17%
Don’t know/unsure	6	6%
Total	94	100%

Among interviewees, where contact with Social Security Scotland had been made by telephone, this was typically described in positive terms (i.e. staff had always been “professional”, “friendly” and “helpful”). Comments were made, however, that it could be difficult to get through to Social Security Scotland with generic queries. One GP who had tried to seek advice from Social Security Scotland in relation to the BASRiS process explained that this was not an easy task:

“I sat on the phone for 23 minutes and no one answered…that is the only number I could find to get any advice on that. And, again, I’m not even sure it’s manned, you know. It’s the same phone number they give to claimants, by the way. So, claimants - I mean, my patients often complain that they spend like 3 or 4 hours on the phone. If you want an advice line for us, give us the number and a different number for general claimants.”

(GP)

Where people had been contacted by Social Security Scotland regarding queries linked to the date of clinician judgement, some clinicians explained that they felt uneasy and a need to defend their position - this was typically because the date of diagnosis was unclear or the diagnosis complex:

“A couple of times when I’ve done a form and then actually Social Services [Security] Scotland has contacted me and said, it sounds like this person’s had this condition for longer, you’ve only just put the form in, why is that? And then I’m either having to say, well it’s because I’ve only just become aware of them and then they say nobody else had done it for them and they’re not getting their full rate. Or that, actually, their diagnosis wasn’t clear because it’s a difficult condition to diagnose”

(Nurse Specialist)

There was also some evidence among nurses in particular that they felt anxious about who they were speaking with when contacted by telephone by Social Security Scotland:

“We had a while when the disability people [Social Security Scotland] kept ringing up asking about patients that were diagnosed and it was like they were wanting information over the phone and, you know, it was really awkward for a while, you know, I’m not speaking to you on the phone about this patient, you know, I don’t even know who you are.”

(Nurse Specialist)

One survey respondent specifically raised concerns over telephone BASRiS completion methods and the security of telephone as means of doing so:

“Verbal over the phone is totally insecure as it could be anyone on the phone. We don't have the time to be interrupted by Social Security Scotland staff phone when it is convenient for them. It should be linked to NHS systems so that patient demographics/identifiers are automatically entered into form and that minimal work is then need by clinicians to complete it.”

(RMP, Clinician Survey)

Overall, however, respondents commented positively that contact with clinicians from Social Security Scotland regarding points of clarification was less frequent than previous contact with DWP for PIP payments, which was welcomed:

“I haven’t had an awful lot of contact. Occasionally, someone’s phoned me. Probably only once since I’ve completed the BASRiS. I used to get phoned more about the DS1500 actually.”

(Nurse Specialist)

“I can still remember the old days of DS1500 getting phone calls from the benefits agency telling me that they’d spoken to somebody about getting them back to work when they were actually sitting in a wheelchair at home waiting to die. That sort of conversation I haven’t had for a long time, so maybe the left hand and the right hand are working better together on it.”

(GP)

Streamlining

Calls were made for a more succinct form of CMO guidance and survey and interview respondents also provided comments or suggestions in relation to what could be done to make the guidance clearer, easier to understand and/or more helpful. The main suggestions were:

• making it shorter or more condensed
• including a flowchart or simple visual aid to assist with decisions
• being clearer on when the different forms should be used (to avoid duplication of effort where only one form was required for a patient):

“There needs to be much more clarity on when to use each form. Most health care professionals have no knowledge of all the different benefits, and it was much easier just doing one DS1500 for all the terminally ill rather than different forms for different ages in different parts of Scotland for different types of benefits.”

(RMP, Clinician Survey)

“Guidance on when SR1 or BASRiS is applicable. We often need to duplicate when we're told we've completed the wrong form which then results in delay for the patient receiving their payments. This then puts patients at a disadvantage as they are still paying out for travel, help at home, equipment etc. but their benefits have been delayed.”

(RN, Clinician Survey)

Is the process correctly followed by clinicians?

CMO guidance

In the qualitative research, comments were made that people had printed copies on their desks “for reference” or kept copies on computers “if needed”, which could potentially result in them not accessing the latest guidance. Contrastingly, others said that although they did not have a copy to hand (and could not remember being sent/having seen a copy), they would simply search for the guidance online if and when needed:

“I just search up on the website. So, you know, I assume the website’s kept up to date. Hopefully that will remain up to date.”

(Consultant)

“I do often just go back and read it again and think, “Am I right in this? Is this what I’m meant to be doing?” I think it’s good to have it there and I have got it saved on my computer and…before I fill in a form, I always do a quick scan.”

(Nurse Specialist)

The CMO’s guidance was last updated in December 2023, and while some RMPs and RNs were confident that they had the most up-to-date guidance, others were not:

“I think I’ve probably been sent it in an email…and I do have it on my computer. And I suppose if I was wanting to see if there was updates, I would probably go on the Scottish Government website and have a look.”

(Nurse Specialist)

There was also some evidence from GPs in particular that the guidance was not being used as intended:

“The CMO tried putting out guidance about it but it’s still very vague. I think, honestly, people are still basically using the same guidance they did for the DS1500.”

(GP)

Date of clinical judgement

Respondents to the clinicians’ survey were asked if they knew (before taking part in the survey) that the BASRiS must explicitly capture the date of clinical judgement of terminal illness. Just under two thirds (63%, n=59) said they did know this, while around a quarter (24%, n=23) did not. The remaining respondents (13%, n=12) were unsure.

Survey respondents who had either directly completed the medical forms or provided information to colleagues to support applications were asked if they had ever experienced difficulties in knowing which date to use on the BASRiS to reflect the date of clinical judgement of terminal illness. Around half (53%, n=48) said they had not, while a third (33%, n=30) said they had. The remaining respondents (13%, n=12) were unsure.

Those survey respondents who had experienced difficulties (n=30) were asked to provide comments about this, with 19 doing so. Most highlighted the difficulty of pinpointing an exact date in certain circumstances as outlined below:

• For certain conditions, e.g. degenerative conditions which worsen over time or where patients can retain a relatively high quality of life for some time, it is difficult to identify the exact time when they would be considered ‘terminal’ and move into eligibility for terminal illness benefits:

“The patient can receive a medical diagnosis but remain stable for a period of time. The disease progression can be insidious, and it can be difficult to pinpoint the exact time of disease worsening.”

(RN, Clinical Survey)

“The term "terminal illness" is very problematic from my point of view - though the definition used is more helpful. I…would tend to apply it when there is evidence of recurrence after initial curative treatment, or evidence of spread of cancer, but this does not correlate fully to being unable to work/having additional needs, and some people may live a relatively normal life with metastatic cancer for a long time before their health really does start to decline because of the condition.”

(RMP, Clinician Survey)

• Where secondary care clinicians make the diagnosis but request for BASRiS goes to primary care clinicians - it was noted that the date of clinical judgement is not always communicated by the secondary care clinicians, that hospital letters do not always contain this information or make it clear, and that the time taken to communicate diagnosis between sectors can introduce delays:

“The diagnosis is usually made by secondary care, and they don't necessarily communicate the date of clinical judgement with us.”

(RMP, Clinician Survey)

• The potential for different interpretations and different dates to be used, e.g. when a patient accesses specific services or seeks medical help; the dates of specific diagnostic tests or scans; when the patient is told of their diagnosis; the point at which curative treatments have been exhausted/stop working and/or when non-curative treatment is pursued, etc.; and
• Challenges with looking back over multiple areas of clinical records to define a date, and/or cases which may require discussion with others involved in their care/diagnosis.

In interviews, there was also no clear pattern to the dates that were reportedly being used by practitioners as the date of clinical judgement, with some reporting that this would vary on a case-by-case basis and depending on what evidence was available to them:

“It would be either from the correspondence I’ve got from the hospital about where somebody is in their illness or my own judgement from my own consultations with them.”

(GP)

As well as there being differences within individual practice, there was a clear discrepancy in the dates being used between practitioners. Some would use historic dates from patient files based on when they first became unwell, were admitted to hospital or received scan/test results. Meanwhile, others used the date of their own assessment of the individual or the date that they completed the BASRiS form:

“I generally put the day that I’m filling the form in cos that’s probably the day that I’ve discussed with people and we’ve made that decision. Have I used another date? I don’t think so. I think there was one person who queried the date with me because they’d been quite unwell for several months…I think it was the benefits lady that phoned me up and said, “Oh you’ve put such and such a date on this form but the lady was actually really unwell”, but she was in hospital for some of that time, so I said, “Well - that’s the day I’ve made my clinical decision.”

(Nurse Specialist)

The SR1 and DS1500 legacy forms

The SR1 form is the replacement for the DS1500, and the Social Security Scotland website offers guidance on when to complete a BASRiS, SR1 or DS1500 form. Clinician understanding the differences between them and when one or the other would be needed was mixed.

Some clinicians had good awareness (typically nurses and those working with cancer patients):

“So, we don’t use the DS1500 now…Up until April, for the under pension age, we would send in an SR1 and a BASRiS to MacMillan, so that if patients were applying for other benefits like Universal Credit and things, they could use the SR1 for that. And I understand that we need to do an SR1 as well as the BASRiS for the over pension age now cos we were just doing SR1s for over Pension age because the BASRiS will cover the disability benefit. But I think if they’re applying for Pension Credit and things like that, they need the SR1.”

(Nurse Specialist)

Other nurses were very confused regarding which forms were needed and when. They said that they reverted to either sending an SR1 or BASRiS only on the assumption that Social Security Scotland and DWP would undertake any necessary onward administrative adjustments:

“I literally just use the BASRiS…And if they’re already claiming any other benefits - as I understood it - Social Services Scotland will then marry that up. So, if they’re already claiming something like Universal Credit or ASA, and then subsequently, you know, if they’ve already been on that and then I subsequently send in a BASRiS, my understanding was that they married them up at that point.”

(Nurse Specialist)

Short-Term Outcomes

Are terminally ill individuals (or their representatives) aware of, and understand, the SRTI process?

As outlined above, the most recent statistics on ADP applications show that, of the cases eligible under the special rules, 6,340 (83%) were received with an SRTI application form or a part 1 form only, and 1,340 (17%) were received with both a part 1 and part 2 form. This means that 17% of SRTI applications came in under standard rules.

Clients generally had a poor awareness and understanding of the SRTI process, and indeed the benefit system as a whole. This was evident at even the most fundamental level with several clients being unable to confidently identify if they had applied for disability assistance under standard or special rules, several confusing Social Security Scotland with the DWP (or others), and several being unclear on the absence of the need for future reviews for SRTI awards. It is likely that some of this lack of awareness may be linked to the fact that most people’s successful special rules applications had been largely directed, led or facilitated for them by support workers or benefits advisors. The confusion was also compounded in many cases by people trying to navigate the system at a time when they/their family members were unwell and were focussed on other issues in addition to financial concerns.

“When I applied for it, I didn’t know what it was, I didn’t know it existed. As I said, I’ve worked since I was 16 years old, I’ve never once been on benefits. So, I had no clue what I was doing.”

(Client, Standard Rules, Recategorised)

Some of the evidence around guidance and signposting is explored under the outcome ‘Guidance (including signposting) for clients is clear and easily understood’, while other evidence is considered below.

Definition

Interviews with clients and feedback from support workers suggest that the terminal illness definition was not well understood by the wider public - most clients who were interviewed were not aware of the difference in terminal illness definitions between DWP and Social Security Scotland.

“People are usually quite shocked when I say to them, “I think because you have got a progressive or a non-curative condition you can claim”. And they’re like, “Oh but, I’m not terminally ill!” So, I don’t think people understand that there’s two different systems and they have slightly different rules.”

(Support Worker)

The benefit system

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. Some also referred to the organisation they had interacted with as HMRC or Social Services and in these cases, prompting of specific case details was the only way to ascertain which organisation they had been in touch with. Some who legitimately had been or were still in contact with both Social Security Scotland and DWP also expressed confusion about which organisation was handling different benefits or entitlements that they/their loved ones received. Some had also had contact with DWP to initiate their historic applications and appeared unaware that these had been transferred to Social Security Scotland:

“I mean, I know that things have been changing hands and changing names recently, but I don’t understand or think anything has changed in relation to me. I think, you know, whether it’s DWP or Social Work or whatever it is now…it’s changed hands or whatever, but I don’t think anything for me has changed.”

(Client Representative, Standard Rules, Transferred)

Another applicant, who had been successful, remained unsure if they were paid by DWP or Social Security Scotland, and even seemed unsure of the exact benefit that they received (although on further prompting were able to confirm that it was ADP):

“Well, it was actually a friend that suggested that, because I was struggling a little bit, that I had to reduce my hours and stuff at work due to physical ability really. And tiredness. So, she suggested that I contact the Department of Work and Pensions to see if I was entitled to anything, you know, any disability, Adult Disability Allowance. So, that was the reason I contacted them…It was actually - I think it was actually Social Security Scotland. It’s Adult Disability Allowance I get.”

(Client, Special Rules)

Eligibility

Another key misconception for some clients had been whether they were eligible based on their financial situation, with many perceiving 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)

Clinicians typically felt that most patients were unaware of their eligibility for disability assistance at the time of their diagnosis or in the period before they became unwell:

“None of our patients ever know that because they’ve got a terminal illness, they’re entitled to additional benefits and fast track of benefits. I have to say 100% across the board, it’s always news to them.”

(Nurse Specialist)

Are terminally ill individuals (or their representatives) not worried about applying for disability benefits?

Clients who had been through the SRTI process reported positive outcomes which included a reduction in worries around money related stress including:

• more easily meeting existing financial demands/commitments (including paying bills)
• paying for equipment and adaptations to support daily living
• paying for additional care or interventions (including therapeutic interventions) to improve their physical and emotional wellbeing
• reducing the time spent working to help with their physical and mental health

The additional financial support had also been used in one case to help fund additional end-of-life care and support at home, which again was described as incredibly valuable for assisting the individual to maintain a degree of choice and control over their personal circumstances:

“She would prefer at this stage not to have NHS carers. She prefers to use the money to pay for somebody to come in to help her and I think that’s quite a big thing because it makes her feel she’s still in control of her life…The quick response is allowing her to immediately get private paid help. This helps her maintain a degree of independence and dignity.”

(Client Representative, Special Rules)

The financial impacts were positive not only for clients but also for their carers who, in some cases, were juggling work and support for their loved ones:

“My partner, he’s been able to go down to part-time working to be able to assist me a lot more in the house and be here with me and take me to hospital appointments…The main thing is that it allows my partner to be able to - he doesn’t claim Carer’s Allowance or anything cos he still earns too much money but at least he’s about to help me a bit more…we wouldn’t have been able to afford for him to go down to reduced hours to be able to help me out if we didn’t have the money.”

(Client, Special Rules)

Support workers also explicitly mentioned that some families set aside special rules payments to help with funeral planning and to ease the worries of their families/loved ones in relation to paying for funeral care:

“I would say a lot of patients who are closer to the end of their life have been relieved to get it and more so because they’ve got the cost of a funeral ahead of them and they don’t want to leave that to their family. So, knowing that they’re going to have some money coming in for this short period of life that they’ve got left, that perhaps can be used to support their family to pay for the funeral, that gives peace of mind.”

(Support Worker)

A reduction in financial stress or pressure also had a secondary impact of reducing anxiety overall, with several recipients reporting an increase in their peace of mind per se:

“I’ve been able to reduce my hours at work and also just basically given me peace of mind.”

(Client, Special Rules)

“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)

However, a number of barriers were cited, particularly among support workers and clients around people being fearful or reluctant to apply for assistance. These included concerns linked to: wanting to remain financially independent; social stigma; impacts on families having to deal with financial matters after their loved one’s death; concerns or misconceptions about means testing; worry that they were not eligible or that the severity of their ill-health may not warrant an award under special rules (i.e. not perceiving themselves as being ‘terminal’); and previous rejections of applications. These are explored below.

Not needing support and wanting to remain financially independent

Across the client sample, even though all those interviewed had eventually applied for assistance, there was evidence of a reluctance to do so for some. This was mainly linked to a wish to retain independence for as long as possible and not be reliant on state support. Indeed, some wrongly perceived that they would be ineligible to receive benefits under special rules if they remained in employment. As one applicant living with Stage 4 cancer explained:

“It wasn’t straight away [that I applied] as I had still tried to work…But then when I went back to my doctor, I got probably quite a firm row from the GP…They understood why I was still working because still working’s not going to take away what’s going on. But then that’s when they found out that my sort of cancer had deteriorated - well, deteriorate is probably the wrong word - spread. So, then I had to speak to them [Social Security Scotland].”

(Client, Special Rules)

Indeed, some support workers reported that clients often asked about how they could pause benefits in periods when they felt well, as they felt they did not want to be a burden on the social security system. This feedback possibly reflects a need for outcomes linked to wider support that enables people to feel independent alongside feeling financially supported.

Social stigma

Some nurses and doctors also highlighted that some families were reluctant to apply for benefits, primarily due to stigma and/or perceptions that the process would be lengthy, arduous and require answering a lot of personal health-related and financial questions. Even where the simplicity of the fast-track SRTI process was explained by support staff, some still declined to have a BASRiS or SR1 completed.

Stigma was cited as something that may act as a particular deterrent to some older people in applying for benefits and this was seen as something to be mindful of with the then roll-out of PADP:

“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)

Impacts on families having to deal with financial matters after their loved one’s death

Other reasons cited why clients may not apply was concern around how accessing benefits may impact on their family/loved ones after their death. There were comments that some patients feared leaving family members with “a mess to clean up” and that handling benefits (including needing to notify Social Security Scotland of a loved one’s death) was another task that they did not want to burden their family with. There were also some concerns that any ‘wrongful’ awards or mistakes that had been made in awards might be something that would cause trouble to families in the future, and result in them having to pay back the money.

Concerns or misconceptions about means testing

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)

Some support workers in particular mentioned that older people were also less likely to apply on the basis that they had savings and were fearful that any application may interfere with that, again not understanding that the benefits were not means tested:

“I would say at least maybe a couple of times a week, I’m probably the first person that’s having the conversation trying to explain to them that ADP and PADP are not means-tested, they are based on your abilities, or they’re based on your circumstances. But especially the older folk [who think] that if you’ve got any sort of savings, then you’re not going to be able to qualify for benefits. So, it is sometimes teasing it out of them to make them realise that it’s awarded depending on your abilities and not on your actual savings.”

(Support Worker)

Worry that they were not eligible or that the severity of their ill-health may not warrant an award under special rules (i.e. not perceiving themselves as being ‘terminal’)

Consistent with feedback from support workers and clinicians, clients who were living with illnesses/conditions other than cancer were more likely to report problems with their applications, including initial failed applications. One participant living with early Parkinson's explained that due to a previous unsuccessful application to the DWP (which could not be verified as actually being made to DWP instead of to Social Security Scotland), they were reluctant to apply again, even under special rules, for fear they might again have an application rejected:

“And they turned round and said it wasn’t successful. They didn’t see it as being life changing because, at the time, I was still working. Well, that’s my thinking of it. I’d seen and read on things on the internet saying that it [PIP or ADP] was available, so I tried but they’ve turned round and declined it. That was last year. But my health’s declined since actually applying for it last year.”

(Client, Unsuccessful Standard Rules Application)

Do terminally ill individuals feel they have been treated with dignity, fairness and respect?

Client Satisfaction Survey respondents who applied for ADP or CDP were asked the extent to which they agreed that they were treated fairly and respectfully throughout the application process. Overall, 73% of respondents agreed or strongly agreed (71% ADP clients and 93% CDP clients). This was higher for those who had had a successful application than for those who had had an unsuccessful application (92% vs 35%).

In the qualitative research, few clients mentioned feeling that they had been treated with dignity, fairness or respect by Social Security Scotland spontaneously, however, when prompted, some confirmed that their experiences had been positive and had reflected these principles.

Specific feedback included that Social Security Scotland had taken time to understand people’s conditions/illnesses and to engage in discussions regarding the wider daily challenges that they faced:

“They are supportive and caring and know like, they wanted to understand what happen to me before they start giving me the benefit. I know it’s not much, but it’s helping me a lot…I’ve been treated well from them, yeah, treated very excellent.”

(Client, Special Rules)

The one client who had received online support to complete the application again stressed how helpful Social Security Scotland had been. Specifically, they had helped to demonstrate the dangers of ‘normalising’ or accepting daily challenges, and had also been reassuring and given the individual greater clarity and confidence with their application:

“Like, they said, you know, “You’ve normalised things, you’ve lived with it for so long that you don’t realise you’re actually struggling”, you know. So, for them saying that to me, I think to myself, that I realised it. I find it really hard to ask people for help, so, you know, internally, I’m struggling myself but it’s getting that realisation of, you know, that enough is enough, I need to slow down and start taking it easy.”

(Client, Special Rules)

Fairness was also mentioned by some in the context of awards being made quickly and the change to weekly instead of monthly payments under special rules.

The payments received helped to bolster people’s sense of independence, dignity and choice. Respondents spoke of feeling “grateful” for the financial support they received and indicated that this was helping to maintain or improve their quality of life:

“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, Standard Rules, Transferred)

“It makes life a wee bit easier. We probably go out for a cup of coffee more often now. It helps to live every day to the full…Now we can put the heating on when we need it.”

(Client, Special Rules)

Several respondents working in support roles also noted that their clients often used the benefits immediately to help with improvements to their daily lives:

“I think removing that time frame and giving them the help from the day that they get the diagnosis has been really, really beneficial because a lot of people make lifestyle changes as soon as they get that diagnosis. That’s what I’ve noticed. They’ll go on to part-time, they’ll go to early retirement, they’ll do whatever, you know, they’ll start making those lifestyle changes and putting their life admin in order. So, this money gives them the chance to be able to do that.”

(Support Worker)

However, some of the language used in communications was still seen by support staff as potentially too blunt and they thought that this could undermine feelings of respect to a small degree. Some support workers who had concerns about cases where a BASRiS was sent to Social Security Scotland by clinicians before a full application had been made and/or before a delicate conversation had been had with the patient, or before they had time to digest and fully understand their diagnosis:

“If a BASRiS is sent to Social Security Scotland and it’s not accompanied quickly by an application, what happens? [Social Security Scotland] said that they would be in contact with the claimant as soon as possible. And I said, well, how soon is that? And they said, within a day, it was basically in a day. I understand you want to do the best for the customer etc. and that but you can’t be phoning them when potentially that conversation hasn’t been had properly yet or, you know, if you’re going to mention any Special Rules to them or anything, you know…you need to give them the time.

(Support Worker)

One support worker gave an example of where this had happened and explained the negative consequences for the client:

“I made an application for a woman who was terminally ill - her form had been submitted by the nurse, and I followed it up with an application and then a day or two later, she got a form in the post that was in bold black and white ‘terminal illness’. And as much as she was aware of her prognosis, she was devastated by this bold black and white statement that was in front of her.”

(Support Worker)

Are terminally ill individuals provided with the support they are entitled to, when they need it?

Getting support through SRTI appears to depend on the individual’s condition, medical team, level of contact with support organisations and how informed their support networks are. There was evidence that some clinicians do applications quickly while others do not. Some adults get help quickly from support services, but others do not. Some who try to apply themselves (often via standard routes) only get help after a long wait. People with certain conditions may not apply at all, either because their clinicians/relevant support organisations do not know/consider them to be eligible (even where they may be), or because they have no post-diagnostic contact with agencies.

There were some concerns among clinicians and support workers that since the process had been introduced (and given the reliance on nurse specialists and support organisations for helping people with their applications), some people who would be eligible may be getting missed and therefore not supported to receive what they were entitled to. Only those who sought support, whether regarding financial or other concerns, would potentially be picked up by the system:

“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)

Feedback from the qualitative research does, however, suggest that more people are being reached under special rules than may have previously been. There was consensus (especially among support workers) that the new Scottish rules were assisting both in reaching more patients and benefitting them more quickly:

“Obviously under the wider scope of the UK benefits, an SR1 is a 12-month prognosis or less but obviously under the Chief Medical Officer’s guidance, BASRiS has actually opened it up to far more of our client group, so they’re getting the money earlier in their cancer journey, which is a real positive.”

(Support Worker)

“Certainly for Special Rules, it’s been really, really, really positive and, you know, I do feel the Scottish Government have done the right thing by that, and I’m really proud that they’ve done that because we see it on a daily basis the difference that that money can make to people at what is the worst time of their lives, you know, following diagnosis.”

(Support Worker)

The most recent statistics show that the median processing time for SRTI ADP applications is 2 days. Within the sample interviewed, the processing times experienced also seemed to be fast for SRTI cases. There also appear to be no issues related to successful applicants receiving the highest possible payments, weekly in advance payments, and correct receipt of backdated payments.

However, in terms of the policy of SRTI and the changes that have been made, support workers also agreed that removing the need for lengthier standard 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 through the submission of an SR1 or BASRiS had acted as a passport to allow them to access additional support in the community. This included making household adaptations, getting community alarms, Blue Badges and mobility aids:

“One of my cancer nurses said to me, because of us moving to the secondary treatment, I’m going to get you a BASRiS form down…So, I’m like, what’s that? And then she explained to me, that means you can go for a car, you can apply for dental treatment, you can apply for reduced Council Tax, things like that. And, again, it’s something I’ve not had a clue about.”

(Client, Special Rules)

“I didn’t know it until my friend told me. Once I qualified for the Adult Disability Payment, that I could go and get a free bus…I think that’s a good thing.”

(Client, Special Rules)

These additional practical supports include access to mobility vehicles for some:

“I would say it’s helpful in a few ways. More so as well, one of the things for me is like I’ve got my car…I didn’t know that, because I qualify for maximum Adult Disability Payment, I can get a Mobility car…having that peace of mind that I can get a newer car, I can get a new car and I’m going to say it’s not going to affect me financially.”

(Client, Special Rules)

“Well, one of the things is that I’m able to have is a Motability car. So, that’s huge for me…I didn’t drive for 4 years because I didn’t realise I could [get a mobility car]. But…I was able to purchase an adapted old Motability car…So, you know, having that money to do that is very useful.”

(Client, Special Rules)

Support workers also suggested that an award under special rules assisted clients with accessing other supports in the community. One word of caution was raised however, that the award letters for special rules contained a lot of information, including information linked to wider support that they may be entitled to. It was felt, however, that this additional information was sometimes missed or lost by patients because it may not be seen as a key message in the award letter. Rather, separate follow-up letters detailing such entitlements were seen as possibly more appropriate/more helpful to ensure that people were aware of these types of additional supports, rather than including such information in the initial award letter.

Medium-Term Outcomes

Have barriers to applying for disability benefits been reduced?

Client Satisfaction Survey respondents who applied for ADP and CDP were asked about whether they had faced any barriers getting help from Social Security Scotland. Overall, 29% said they had faced barriers. Of those respondents:

• 30% said they could not communicate with Social Security Scotland how they wanted to
• 26% said they could not get the information or updates they needed
• And 28% said they could not communicate with Social Security Scotland when they wanted to

Client Satisfaction Survey respondents who applied for ADP or CDP were also asked the extent to which they agreed with statements around communication:

• 72% agreed or strongly agreed they had enough choice about how they communicated with Social Security Scotland
• 72% agreed or strongly agreed they had enough choice about how Social Security Scotland communicated with them

Qualitative evidence on the removal of barriers for individuals around, guidance, application forms, signposting, awareness, worry and stigma have been covered in findings for individual outcomes above. While these findings will not be repeated in full here, overall, and taken with the Client Satisfaction Survey findings above, they present a mixed picture.

On the one hand, the research shows that there has been progress in reducing barriers to applying for disability benefits, such as:

• the time taken for applications to be processed
• the application form being simplified
• no requirement for a fixed life expectancy
• backdating of payments

On the other hand, other barriers are still apparent, such as:

• lack of early and consistent signposting following diagnosis in all eligible cases
• reluctance on behalf of some clinicians to complete the BASRiS form
• ambiguity and lack of awareness around eligibility among some clinicians and support organisations/charities
• misunderstanding around the non-means tested nature of disability benefits among potential applicants
• social stigma and fear attached to awards made in error/implications of payments for families after death
• lack of understanding or acceptance of terminal diagnoses for some patients
• lack of engagement with services for more hidden populations (such as those with long term degenerative conditions that do not require regular post-diagnostic support) and therefore lack of referral routes into receiving disability benefits through the SRTI process

Has trust in Social Security Scotland increased?

There are some early indications that the speed with which SRTI applications are processed is creating a sense of confidence in Social Security Scotland and their efficiency. People welcome updates on the progress of their application (a service offered for standard rules applications).

Specific feedback included that Social Security Scotland had taken time to understand people’s conditions/illnesses and to engage in discussions regarding the wider daily challenges that they faced:

“They are supportive and caring and know like, they wanted to understand what happen to me before they start giving me the benefit. I know it’s not much, but it’s helping me a lot…I’ve been treated well from them, yeah, treated very excellent.”

(Client, Special Rules)

The one client who had received online support to complete the application also stressed how helpful Social Security Scotland had been. Specifically, the staff member had helped to demonstrate the dangers of ‘normalising’ or accepting daily challenges, and had also been reassuring, giving the individual greater clarity and confidence with their application:

“Like, they said, you know, “You’ve normalised things, you’ve lived with it for so long that you don’t realise you’re actually struggling”, you know. So, for them saying that to me, I think to myself, that I realised it. I find it really hard to ask people for help, so, you know, internally, I’m struggling myself but it’s getting that realisation of, you know, that enough is enough, I need to slow down and start taking it easy.”

(Client, Special Rules)

However, 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 new system was more obscure than legacy systems
• limited accessibility to Social Security Scotland for those wishing to discuss initial or outstanding standard rules applications perhaps negatively affecting perceptions
• some negative perceptions linked to unsuccessful applications or lengthy/protracted standard rules applications (which preceded a successful award under special rules)
• 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 beneficial in reaching more patients and benefitting them 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)

Further, the use of direct or potentially insensitive language in letters sent from Social Security Scotland (and specifically those that make reference to ‘special rules’ or ‘terminal illness’) may also undermine perceptions of it being person-centred, trauma-informed and appropriately sensitive in special rules cases. More inclusive communication from Social Security Scotland was suggested for those with terminal illness.^[8]

Are there reduced money-related stress and reduced pressure on household finances?

Overall, there was positive evidence for these outcomes, with the main positive impact being a general increase in household income for clients in the qualitative research. They reflected that this also supported their current wellbeing. This allowed people to:

• more easily meet existing financial demands/commitments (including paying bills)
• pay for equipment and adaptations to support daily living
• pay for additional care or interventions (including therapeutic interventions) to improve their physical and emotional wellbeing
• reduce the time spent working/reduce their hours of paid employment to help with their physical and mental health

As above, clients typically considered that the high level payments were adequate and several clients mentioned that they had been able to buy additional equipment or other items that helped with managing their conditions:

“I’ve got lymphoedema, so getting extra lymphoedema sleeves, I have somebody that comes in and helps me clean now because I can’t do a lot of the tasks myself. I am very careful about using the money for wigs cos I don’t have any hair and stuff like that. So, yeah, I do find it really positive.”

(Client, Special Rules)

The additional financial support had also been used in one case to help fund additional end-of-life care and support at home, which again was described as incredibly valuable for assisting the individual to maintain a degree of choice and control over their personal circumstances:

“She would prefer at this stage not to have NHS carers. She prefers to use the money to pay for somebody to come in to help her and I think that’s quite a big thing because it makes her feel she’s still in control of her life…The quick response is allowing her to immediately get private paid help. This helps her maintain a degree of independence and dignity.”

(Client Representative, Special Rules)

The financial impacts were positive not only for clients but also for their carers who, in some cases, were juggling work and support for their loved ones:

“My partner, he’s been able to go down to part-time working to be able to assist me a lot more in the house and be here with me and take me to hospital appointments…The main thing is that it allows my partner to be able to - he doesn’t claim Carer’s Allowance or anything cos he still earns too much money but at least he’s about to help me a bit more…we wouldn’t have been able to afford for him to go down to reduced hours to be able to help me out if we didn’t have the money.”

(Client, Special Rules)

Support workers also explicitly mentioned that some families set aside payments through special rules to help with funeral planning and to ease the worries of their families/loved ones in relation to paying for funeral care:

“I would say a lot of patients who are closer to the end of their life have been relieved to get it and more so because they’ve got the cost of a funeral ahead of them and they don’t want to leave that to their family. So, knowing that they’re going to have some money coming in for this short period of life that they’ve got left, that perhaps can be used to support their family to pay for the funeral, that gives peace of mind.”

(Support Worker)

Access to wider support and entitlements

On a practical level, several respondents also mentioned that a successful application for ADP/PADP under special rules through the submission of an SR1 or BASRiS had acted as a passport to allow them to access additional support in the community. This included making household adaptations, getting community alarms, Blue Badges, Accessible Vehicles, and mobility aids:

“One of my cancer nurses said to me, because of us moving to the secondary treatment, I’m going to get you a BASRiS form down…So, I’m like, what’s that? And then she explained to me, that means you can go for a car, you can apply for dental treatment, you can apply for reduced Council Tax, things like that. And, again, it’s something I’ve not had a clue about.”

(Client, Special Rules)

“I would say it’s helpful in a few ways. More so as well, one of the things for me is like I’ve got my car…I didn’t know that, because I qualify for maximum Adult Disability Payment, I can get a Mobility car…having that peace of mind that I can get a newer car, I can get a new car and I’m going to say it’s not going to affect me financially.”

(Client, Special Rules)

Long-Term Outcomes

The long-term outcomes identified are:

• Human rights are respected and protected
• The take up of benefits is maximised
• Poverty is reduced

As discussed in the limitations, changes to support the implementation of the SRTI policy will play an important role in contributing towards these long-term outcomes. However, it will not play an exclusive role. For example, continuous improvement, other changes to the social security system, and policies relevant to the delivery of disability benefits will also have an impact, as well as wider efforts on poverty, human rights and disabled people.

These outcomes therefore relate to the wider impacts of policy changes made to date in the delivery of disability benefits in Scotland, and require more data gathering and long-term data. An evaluation of these outcomes therefore needs to be explored in combination with the full suite of policy changes.