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

The application process and outcomes

The BASRiS form

Those who responded to the clinicians’ survey were asked how many times in the last 12 months they had been directly involved in completing a medical form for either a terminally ill adult or child (either BASRiS or the DWP equivalent, SR1/DS1500). Just 7% (n=7) had never been involved, 64% (n=60) been involved fewer than 10 times, 25% (n=23) had been involved more than 10 times but less than 50 times, and 4% (n=4) had been involved more than 50 times.

Those who had been involved in completing a medical form were then asked to identify which forms they had experience of completing in the last 12 months.

Table 7: Type of medical form completed in last 12 months (clinician survey)

Response options	Number	Percentage
BASRiS	73	84%
SR1	49	56%
DS1500	29	33%
Total	87	100%

Completion of the BASRiS form was reported more than either the SR1 or DS1500, however, over half and one third of the sample reported completing each of these forms respectively in the last 12 months.

BASRiS formats

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 8: Method of BASRiS completion (clinician survey)

Response options	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 competing 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. No-one who took part in an interview reported having completed a BASRiS by telephone, despite this sometimes being employed by Social Security Scotland as a means of gathering relevant patient information quickly to expedite clients’ applications (a completed BASRiS form still, however, being a requirement). One respondent noted that they had been unaware of this function before taking part in the research, and was keen to pursue this a route going forwards to “save time”.

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)

Support workers also commented that they welcomed electronic copies being available for sharing as this meant that that could also submit a BASRiS on behalf of the clinician and client, and more easily act as a ‘middle-man’:

“What I’ve found is although the guidance tells the clinicians, complete this BASRiS and send it to Scottish Social Security, I ask them to send it to me and I’ll do the application and upload at the same time to reduce any further phone calls required to the patient…If they were to follow the guidance, send us the information, the patient then has to get numerous calls from Scottish Social Security and I just feel it’s a slicker, smoother process - give it to me and I’ll send both away together and they never have to contact them.” (Support Worker)

Support workers also noted that this approach was more likely to prevent cases where Social Security Scotland would contact the patient directly and discuss the terminal nature of their illness, and/or send an outcome letter to a patient without them already being fully aware of their terminal condition. By support workers handling all communication with the patient/client and having honest discussions with them about their eligibility at the start, there was less risk of “shock” at a later date:

“Psychologically, even though they know their diagnosis and prognosis and the clinician’s ticked that, people have their own way of responding to that information.” (Support Worker)

Some support workers did also suggest the need for more options on the special rules application form regarding how a BASRiS could/would be submitted as the current options were too restrictive and did not cover all processes being used:

“There’s just a couple of things about when you are doing the online claim, it says, are you uploading the BASRiS now or will you post it - I feel there should be an option of we will upload it later, you know, because you either upload it or you post it or would you go and get it for us? But quite often we’ve done the claim and we’re just waiting on the BASRiS. We’re not going to post it but we’re going to upload it later.” (Support Worker)

Other support organisations, that were not on the ‘allow list’ also commented that them not being able to submit a BASRiS directly could be frustrating and prolong the process in some cases^[6]. Comments were also made that digital formats may encourage people to write more and provide more detail (compared to written forms) which was positive to support people’s applications. Medical staff were also able to send digital BASRiS through their NHS email accounts, which was perceived as safe and efficient.

A small number of support workers who were often working with both terminally ill patients under special rules and non-terminally ill patients under normal 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)

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 9: Agreement with statements about BASRiS (clinician survey)

Response options	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)

One GP who said he found the BASRiS forms “unworkable” reported that they always submitted a DS1500 when asked for a medical form to support a benefits application and this had never been queried or returned. On this basis, he continued to use them instead of the SR1 or BASRiS as he was more familiar with their content and more comfortable with the terminal illness definition that applied.

Other 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)

Those who were filling in BASRiS or SR1 forms on a regular basis felt that there was no need to refer back to the CMO’s guidance in this regard:

“I think, you know, it’s one of these things you read it at the time and then you kind of…we fill them out so frequently that you just go straight to the form and fill it out…I think a lot of the CNSs they do get phone calls through to ask about what they put on it [the BASRiS]. Whereas I don’t feel we get a lot of phone calls because I think it is clear for our [cancer] patients.” (Nurse Specialist)

The SR1, DS1500 and legacy forms from DWP

The Social Security Scotland website offers guidance on when to complete a BASRiS, SR1 or DS1500 form. There were clear differences across interviewees with regards to the BASRiS, SR1 and DS1500 medical forms and understanding the differences between them and when one or the other would be needed. While support workers had good awareness, clinician understanding was mixed, and clients had very little understanding of the different forms.

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 ESA, 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)

Some who were unsure explained that they defaulted to the BASRiS and waited for further instructions from welfare colleagues if alternative forms were needed:

“I think the only thing that gets confusing is for some of our patients is that a lot of our patients are below retirement age, so it’s knowing which form they actually need because I understand it can be different depending what benefits they’re already on…So, sometimes, we’ll think, OK they’re below retirement age, it’s BASRiS, we’ll fill that out and then Welfare Rights come back to us and say, actually, they need an SR1 because they’re on X, Y, Z, you know, they’re on benefits already. So, I think that’s where we get confused. We often don’t know which one to do.” (Nurse Specialist)

Support workers confirmed that there seemed to be some apparent confusion among clinicians regarding different medical forms:

“We need to make them [clinicians] understand that that SR1 isn’t going to go away. There’s been so much confusion over the last few years - they don’t fully understand what BASRiS is and what it’s about. There’s a lot of back and forth with GPs sometimes, especially the GPs regarding what form to fill [in], what it means, you know, what it’s about for the patient, etc…it will take us a while to make them understand that SR1 is not gone, it still needs to be completed on occasions for patients if we’re doing a benefit that would be at the UK government rather than the Scottish government. But yes, there’s a lot of confusion around. A lot of confusion.” (Support Worker)

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

Reasons for using legacy forms

The 64 survey respondents that stated they had completed the SR1 and/or the DS1500 within the last 12 months were asked to identify what the typical reason was for doing so.

Table 10: Typical reasons for using the SR1 and/or DS1500 (clinician survey)

Response options	Number	Percentage
I do it in cases where it is required by the Department for Work and Pensions	19	30%
I am more familiar/experienced with SR1/DS1500	18	28%
It is easier/more convenient to complete SR1/DS1500	14	22%
I had no awareness of BASRiS before now	5	8%
Other	23	36%
Don’t know/unsure	5	8%
Total	64	100%

Just under a third of the respondents (30%, n=19) indicated that they typically use the SR1 and/or DS1500 in cases where they are required by DWP. Just over a quarter (28%, n=18) said they use them because they are more familiar/experienced with these forms, and just under a quarter (22%, n=14) said these forms were easier/more convenient to complete. Just five respondents (8%) said they had no awareness of the BASRiS before taking part in the survey.

Of those who indicated ‘other’ reasons, many said they completed these forms as they had been requested, typically by other support services who were completing the application. A few noted that they had completed both the BASRiS and either an SR1 or DS1500, while a few others indicated that completion of these forms was more historic and that they had largely switched to using the BASRiS now. However, some unique practices were apparent, with respondents interpreting the different forms being relevant to different conditions or age groups (despite this not being the case):

“SR1 completed for those patients with incurable cancer with <12 months prognosis. BASRiS completed for those under pension age with incurable cancer.” (RN, Clinician Survey)

“Complete both if under pension age as may be eligible for other benefits via DWP as well as disability benefits in Scotland.” (RN, Clinician Survey)

“My understanding was that over 65s needed an SR1 and under 65s BASRiS.” (RN, Clinician Survey)

Consistent with interview feedback, a few survey respondents also flagged a lack of clarity around which form needed to be done, for whom, and in what circumstances. One respondent suggested that it was not obvious when both forms (BASRiS and SR1/DS1500) were needed. Another felt that the guidance was “very confusing”, while another indicated that they had received conflicting advice:

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

One survey respondent also queried the need for the change. They felt that the DS1500 form was straightforward and well known, and therefore, a new form was perhaps not necessary. Others simply expressed a preference for the DS1500 form:

“The questions between the BASRiS and SR1/DS1500 are similar, but the BASRiS is more time consuming to complete that the DS1500. More history is required (and needs specialist input), the paper form is less user friendly with no lines in the boxes to write in.” (RMP, Clinician Survey)

Understanding of medical forms among applicants

There was also a notable lack of clarity among clients regarding medical forms, including the BASRiS, SR1 and DS1500. Almost all reported that these were unfamiliar terms for them.

People discussed providing support workers/nurses and/or Social Security Scotland with supporting information, such as doctors’ letters, letters from the hospital, copies of/details of prescriptions, a note of hospital appointments attended, etc. However, they did not know if/what was really needed and how the paperwork or forms differed from one another. It is possible, in fact, that for those who applied under special rules, the reference to “doctors’ letters” may have referred to the BASRiS form itself, however, this was not possible to ascertain:

“I keep all of my letters anyway, so I did take in to [the support organisation] you know, things like my list of prescription medication, I did take in all my hospital letters, appointments, diagnosis and all that kind of stuff. I had all of that anyway…I can’t remember exactly what she used as supporting evidence. But certainly some of it - things like my prescribed medication and stuff like that, she definitely used that kind of stuff. But I don’t know - she just kind of picked out what she wanted out of everything.” (Client, Special Rules)

Another client representative commented that they had learned throughout the process to keep copies of all paperwork, something that they perhaps had been unaware of before applying:

“I mean, now I know to keep everything but finding diagnosis letters and all these things, you need to know to keep all of these because most people ask for that. So, that was a thing.” (Client, Normal Rules, Recategorised)

While some clients may have been given or received a copy of the BASRiS paperwork, most were not aware of this specifically. Only four respondents referred to medical forms specifically by name - one of whom had been directly handed an SR1 by their GP, and three who had been given or had been made aware that a BASRiS had been completed by a medical professional/nurse. One recipient explained their understanding of the BASRiS form as follows:

“Basically, they completed the BASRiS 1 form. So, what that means for me is, because I’ve had to go and get secondary treatment because my condition has deteriorated, it automatically, through medical - acknowledgement is maybe the right word - moves me right up to the maximum Adult Disability Payment. Does that make sense?” (Client, Special Rules)

One successful applicant reported that they had been advised by Social Security Scotland to provide as much information as possible to support their application, which they framed as being necessary to help ‘prove’ their eligibility:

“They just said, you know…the more evidence you can supply, the better it would be for you. That was basically all they said…I had letters for appointments and stuff, just to basically prove that I’m not telling lies, you know.” (Client, Special Rules)

A different respondent explained that in all documentation they had received regarding their illness prior to speaking with Social Security Scotland, none stated that their condition was terminal. While the nurse practitioner had verbally told them it was non-curative and terminal, this was not ever put in writing so he had no formal written documentation which confirmed this. This made discussions with Social Security Scotland more challenging/confusing than they perhaps needed to be. The respondent reflected that the absence of clear written confirmation had made the process “daunting” and perceived that there were unnecessary challenges introduced to the process by “doctors’ refusal to state you are dying” on letters/written documents provided to the patient. The same respondent reported that they had in fact, been advised that doctors used to include reference to individuals being ‘terminal’ on their diagnosis letters to patients, but had stopped doing so to avoid the negative impact it had on patients and their families.

A different applicant explained that they had experienced challenges in accessing the medical forms they required, because of what they perceived as gatekeeping issues with speaking to a GP at their local surgery, i.e. receptionists not understanding their queries or making it difficult for them to speak with their GP to ask for a BASRiS form. The participant recognised that this challenge was not exclusive to benefits assistance applications or special rules cases, and was more indicative of challenges in accessing GPs per se. However, it highlighted some of the associated challenges and delays that may add to the overall application burden for individuals who approach the BASRiS system alone.

Support workers confirmed that clients/patients would be unlikely to know and understand the differences, especially where the BASRiS process was followed for them, by others:

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

Support (and absence of support) for applications

Those who had found the application the easiest were those who had received support from either nurse specialists (such as Macmillan and Marie Curie nurses) or via organisations that had dedicated benefits advice workers (like Maggie’s or MND Scotland). As one client who had an award under special rules processed quickly observed:

“I got diagnosed with the secondary cancer so, at that point, my medical team had filled out - there was a form that could get filled out to say that I had secondary cancer and it was now terminal or non-curative. So, my breast cancer nurse had sent that with the permission of the oncologist, who then forwarded it to DWP [Social Security Scotland] and then, as a result of that, I got the benefit and I got it backdated about 3 weeks later.” (Client, Special Rules)

Support workers confirmed that the process of supporting others with their applications was smooth, especially where a third-party mandate was in place and/or they were authorised by the individual to proceed on their behalf:

“I’ll go through the required questions before I do the online claim. We’ll get their bank information. I’ll try and get everything at the one time and I’ll upload the BASRiS or SR1 on the online claim and then I will then tell the person, once I submit they will get an acknowledgement text and then they will get the decision notice, the determination and it’s a nice smooth easy process and they don’t have to come in and see me. So, if they’re quite poorly, not able to come in, that system allows an adviser to make the application on their behalf and it works really well.” (Support Worker)

Those who had made use of the assistance offered by Social Security Scotland also reported positive experiences, particularly around providing evidence in relation to their disabilities/change in capacity and how that may manifest itself in daily life:

“I made it [the application] myself and they [Social Security Scotland] gave you the option, which is what was really good, that you could ask for someone to help you online to actually fill out the application form…So, we did a face-to-face over Zoom… It was very, very easy and very relaxed. It was very helpful because you get so used to normalising things, that you don’t realise that you’re actually struggling. You know, the fact of lifting a kettle used to be great with one hand, but now you’ve got to use two and things like that, you know. That kind of thing.” (Client, Special Rules)

This client explained that they had also found sending information to Social Security Scotland to support their application easy, and that there was a “dedicated file” to do so, e.g. a copy of the letter they had received from the hospital including their diagnosis.

Another respondent who experienced challenges with written and spoken English had received in-home support from “a lady” who they thought (but were not sure) was from Social Security Scotland in completing their application which they described as “very helpful”:

“I fill it online [the application form], so I couldn’t finish everything, so it says on the form online, if you need help, you can phone and they would send someone to come and help you to fill it…It was Social Security Scotland…she came to the flat to interview me with her laptop…She saw everything anyway, she saw everything, my [disability], everything, she saw it…I wasn’t able to fill in the form everything, so it helped a lot because she came down to the flat and sit with me and go through everything with me, so it was very helpful.” (Client, Special Rules)

Importantly, not everyone was aware that help was available from Social Security Scotland to help with their applications, and this is something that would have been welcomed for some applicants who had attempted to apply themselves, including those whose applications had been unsuccessful:

“It was never indicated or suggested to me that there was people there to help with it. I mean, my writing isn’t the best, so maybe they’ve taken a look at that and they’ve not understood it…I never thought of getting anyone else to fill it out, you know.” (Client, Unsuccessful Normal Rules Application)

Those who had attempted to apply for benefits either under normal rules or special rules by themselves explained that they found the application process very challenging and time consuming, especially the application form. As one recipient living with Stage 4 cancer who applied using ‘normal rules’ explained:

“I did it myself. [Support Organisation] advised me, like, where to go to be able to apply and things like that but they didn’t help me with the form. There wasn’t that support available at the time. So, I did it online and my way to describe it is long. Filling in the form, I mean, it’s broken down into 17 sections. So, it’s very difficult and it’s difficult because you’re having to give an answer and then you’re having to give an example. So, you know, you’re finding it hard to process to start with what’s going on as it is, without then having to tell a stranger, if that makes sense.” (Client, Normal Rules, Recategorised)

The single biggest issue raised in relation to applications using normal rules was length and complexity of the application form which had been challenging for many:

“I did my form myself. So that maybe wasn’t the best way of doing it, cos I’m no good at form filling or anything like that. And it was a big paper booklet they sent through…. I mean, because I struggle with forms, I think it took me about a fortnight. I’d do so much each night when I was capable of doing it and then obviously speaking to my GP and getting things sent from them, you know. So, it would be at least a fortnight since from when the envelope landed till it went away again.” (Client, Unsuccessful Normal Rules Application)

“It was huge, it was like a book, and quite an undertaking to complete…It would put people off applying.” (Client Representative, Recategorised)

Application routes

Across the research, views were sought on why some people may submit a normal 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 terminal:

“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 normal rules, where a special rules application would have been more appropriate, were those who approached the process alone. Several support workers who had come into contact with adults very late in their journeys noted that people had struggled through with a standard ADP application early in their illness, not knowing that the BASRiS route was available.

One respondent, who had applied for ADP under normal rules before receiving a terminal diagnosis (which meant they were then eligible to apply for and had received the payment under special rules) was able to compare the two different experiences:

“Completely chalk and cheese. So, I did the original application, which was long, that’s the only way I can describe that as long. Then, it took a while for us to get the decision. So, I waited maybe about 10 to 12 weeks for that decision. So, and then, I spoke to my cancer nurse on the Tuesday, she completed the BASRiS form on the Tuesday. MacMillan phoned me on the Wednesday and then I received my payment the following week...So, that’s what I mean, chalk and cheese. Going from a very, very long, slow process to fast and rapid, if that makes sense.” (Client, Special Rules)

One client who had originally applied for ADP themselves under ‘normal rules’ explained that their original application had been rejected, and it was only on appeal, and with support from a local Advice Shop, that their application had been successful. The applicant (who spoke only partial English) had been unaware of the fast-track special rules option at the time that they applied via the normal route, and explained that they had sent supporting information with their original application in the form of what they described as a “doctor’s letter”. They were also unfamiliar with any of the medical forms described in interview:

“At first, I uploaded the doctor’s letter and sent this up with the form. Four to roughly five months later, they rejected the claim and then we appealed for that and for the second time, it was accepted.” (Client, Special Rules)

In both cases, applications under special rules with assistance from a support worker had resulted in a speedy and much more efficient response than individuals’ attempts to apply on their own.

Application formats and the questions asked

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

In such 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 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)

Another who had received face-to-face support also noted:

“I think the booklet was quite overwhelming, to be honest with you, it was so long. But with [organisations] help, I was able to fill it out...I think if it would just be me and I didn’t have support, I would have found it quite difficult to answer some of the questions just because it was like 70 odd pages.” (Client, Special Rules)

The main reported challenges with the normal rules application forms for ADP and PADP were linked to the level of detail required for the application and the nature of questions that were asked, although clients recognised that these were necessary. One client who had experience of both an earlier normal rules application and had a later successful special rules award noted:

“The information required is quite invasive. You know, it’s very personal. I’m not saying I’m not a private person, I am, I like my privacy. But obviously, you know, there’s some things that you’ve got to admit to yourself, you know, like to give you a wee example - bladder weakness obviously when you’re coughing, that kind of thing. That is a bit personal. So, those kinds of things you have to answer. I think it’s just embarrassment more than anything.” (Client, Special Rules)

A different applicant explained that some of the questions, in particular, felt quite personal and the level of disclosure required made them uncomfortable:

“I’m one of these people; I’m a very open book. If you ask me a question, I’ll tell you the answer and things like that. But if I don’t know you, I’m a bit like, why are you asking me that? Do you know what I mean? I can be a bit like that. So, the fact that, like, some of my nearest and dearest didn’t know exactly how much I was struggling but I’m having to tell a stranger who doesn’t know me. If that makes sense. I did find that really, really difficult.” (Client, Normal Rules, Recategorised)

Others also commented that they felt the questions in the ADP application form were repetitive and perceived that this was perhaps intentional as a ‘fact checking’ exercise:

“I would probably say possibly having had some assistance would have helped because some of the questions are very vague and I also think some of the questions are very repetitive…I feel that you’re giving the same answer. I would probably say in a way they’re maybe trying to trip you up and I know that sounds a bit harsh, but they’ve maybe just worded a question a bit different to see if you’re going to give a different answer...” (Client, Normal Rules, Recategorised)

Other issues linked to question wording were raised by those who completed forms on other’s behalf included having to answer in the third person, which was sometimes challenging. One respondent also reflected that they were not sure if they were supposed to have completed the form in this way:

“It was pretty straightforward. It’s just getting all your ducks in a row and being able to speak for the person, you know, because - there was not a cat in hell’s chance even at that stage he could have filled in any of the form himself. Because the questions are to the person, you know, “Are you able to make yourself your tea?” or whatever. So, I answered all those questions on his behalf, whether I was supposed to or not which was, you know, the nature of the thing is that he couldn’t have done that himself - no chance he could have done that himself.” (Client Representative, Normal Rules, Recategorised)

The one respondent who had assisted their friend with their application explained that they felt it necessary to be blunt on the application in order to reiterate the seriousness of their friend’s condition. They reflected, however, that others (including families of those with terminal illnesses) may be less willing to use the language required in an application to make their point clearly:

“Although it seemed quite right saying, you know, she has a terminal illness, she’s receiving end of life care, she told me straight up, she said, “I don’t want any of my family seeing this.” They knew that she was applying for it and had encouraged her, but I just don’t think they would have liked the bluntness that I’d put in it. But at the end of the day, you’ve got to be blunt and state what the facts are.” (Client Representative, Special Rules)

The respondent noted that this perhaps highlighted the importance of having someone more independent to assist adults with their applications, i.e. someone who may find it less emotionally challenging to explain someone’s terminal condition in unfiltered terms.

One respondent reflected on problems linked to their status as a carer/appointee and the added complications this had contributed to the process of having their partner’s application for ADP recategorised:

“I phoned the number and said, these things have changed markedly. And he said, “Are you an appointee?” And I said I was, being a wife, and he said, “No, no, you’re not an appointee”, so now I had 4000 hoops to jump through, so that was a huge process. Somebody had to come out to the house to establish who I was. So, that was a bit of a process that took quite a long time but that did get put through and, now obviously, I’m able to phone up and do things on his behalf and all the rest of it.” (Client Representative, Normal Rules, Recategorised)

Finally, 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)

More general issues linked to telephone wait times are discussed below.

Timescales for applications and receipt of benefits

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

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. One applicant who had received support from a charity organisation reported receiving an award letter within one week telling them that they would be receiving the highest level of PADP. Another applicant had received a response within two weeks of their application. Support workers confirmed that this was in line with their own experiences too:

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

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

For those working with more generic and non-medical focussed charities, including those that worked with minority groups to offer wider community-based support, there were reports that the process for SRTI had been lengthier, with one quoting a period of five months, and another four months from the start of the application process to the receipt of benefits. This difference was mainly due to some of the non-specialist charities taking longer to arrange initial meetings with clients (based on part time staff/volunteer availability and client availability, especially for community based services with wide geographical coverage). It was also due to necessary time spent persuading clients to apply (and offering wider reassurances around what the process entailed), time required to gather necessary consents, chase up the BASRiS form from the appropriate clinician and get patient/carer sign off. Charities with specialist nurses attached (especially those operating ‘full time’ and in hospital or other care settings) were able to achieve these things much more quickly.

Another respondent (who confused Social Security Scotland with DWP) explained that although their application had been ‘slightly slower’ they had received satisfactory explanations as to why:

“I was told that I would get an answer - like it was a 14 day turnaround and I didn’t actually hear anything in the 14 days…I can’t remember exactly how longer after it was, it wasn’t that long, it was maybe about 4 weeks by the time all in. So, I ended up phoning DWP [Social Security Scotland] just to kind of find out what was happening and the gentleman was very helpful and he basically said that it was just at the time of final ratification kind of rubber stamp stage and that I would get a letter. So, it wasn’t the 14 days, but it wasn’t a huge amount of time much later than that, that I got the benefit and I received it backdated to the initial claim date…” (Client, Special Rules)

Where people had made successful applications, all reported that payment had been prompt following confirmation of their eligibility. In only one case had the individual encountered problems with receiving initial payments, and this was due to an error with the individual’s bank account being temporarily frozen rather than anything linked to payment by Social Security Scotland.

All who had received payments reflected positively on the promptness of receipt. This necessity of prompt payment was also highlighted by the carer who spoke on behalf of their friend who had died very soon after their application:

“She [the recipient] deteriorated very quickly and died within 4 weeks of receiving a response that she was to receive this benefit. This perhaps serves to highlights the importance of a speedy processing of applications…Individuals lose much control of their life when on end of life care…A simple thing like ease of form filling and quick response does bring back an element of control and independent which can be so important when the rest of your life is falling apart and the individual feel they have no control.” (Client Representative, Special Rules)

The main issue that was raised in relation to speed of processing came from 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)

Transfers, recategorisations and changes in circumstances

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

In two cases where the applicants were very clear that their cases had been transferred, this was described as a smooth process for both:

“I was transferred from PIP to the ADP just, you know, after that all started. I don’t think too long ago, maybe about a year or two but my memory’s not good. Again, it was a very simple process for me and I’m aware that I’m actually - I feel very lucky actually in how I’ve been dealt with and so when it was transferred over.” (Client, Normal Rules, Transferred)

“There was no paperwork involved. It transferred automatically and I didn’t have to do anything, which was quite good that I didn’t have to do anything, that it changed over automatically.” (Client, Normal Rules, Transferred)

One respondent also queried what the process was for movement from ADP to PADP and if this was an automated process:

“I had wondered whether, when he [client] reaches pension age, do we then still get the benefit? I wasn’t quite sure about that and I said about this pension age disability. I don’t know what that is or whether we’ll switch to that or whether it’ll stay the same or what. I don’t know.” (Client Representative)

Most clinicians and support workers noted that there were no issues with recategorisations or reporting changes in circumstances (i.e. alerting Social Security Scotland that someone’s condition was now being classified as ‘terminal’). It was noted, however, that deciding whether to apply under normal rules and wait for a recategorisation or whether to wait and submit a special rules as the initial application could make a difference to the work involved in the application:

“Sometimes, you’ll go back to the medical team and they’ll go, it’s not BASRiS yet but we’ve got another scan coming up in such and such a period of time…even just last week, one lovely gentleman, he has had his chemo and he just didn’t tolerate it at all and now they’ve turned round and they’ve said this isn’t going to work. It could have been curative if he’d had the chemo but he can’t tolerate it. So, actually, they’ve just had to pull the plug on that…but I’d already spent weeks, the claim was in, it’s just waiting to be processed. But I just, you know, bunged the BASRiS straight in as soon as I got it and did it that way…So, things can change and it’s just keeping ahead of that as well.” (Support Worker)

Several medical practitioners and support workers noted that things often changed very quickly, and the most straightforward and efficient cases were by far those where a BASRiS would be used straight away.

Some support workers perceived that transfers and recategorisations could result in it taking slightly longer for patients to receive the full entitlements compared to ‘new’ BASRiS applications, however, this was largely anecdotal.

Receiving maximum amounts

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

Although the research did not seek views on the adequacy of the payments, a small number of participants did spontaneously reflect on this aspect. Two clients who were in receipt of the highest amount indicated that they felt the value of the highest rate payments was “too low” or “insufficient” for their own needs. One of these respondents described needing to use the money to pay for basic living costs such as heating, gas and electricity and the other described how the money was used for food and daily living but did not extend to help them meet the needs of the medical expenses associated with their condition (although this was exacerbated by the support that they needed not being available to them on the NHS).

Some support workers also spontaneously volunteered that most patients/clients were satisfied with this amount and perceived it as adequate:

“They often come back saying, “I can’t believe that I get £280, my goodness, that’s a lot”, you know. So, yeah, they’re really quite surprised at the level that they get but what a difference it makes to them.” (Support Worker)

There were also no issues raised across the 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.

Backdated payments

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)

This initial payment included both the PADP payment plus the backdated payment and, consistent with what others reported, the backdated payment was clearly explained.

As above, some clinicians and support workers had doubts about which date was being used for the clinical judgement and if this was always the most relevant or appropriate date, but there were no apparent complications with payments being made up the maximum of 26 weeks before the application date. A couple of support workers did, however, talk about instances of inconsistent practices regarding backdating whereby this was sometimes done for more than 26 weeks before the application date but, other times, the 26 week rule applied.

Future reviews

The principle of no future reviews was welcomed by all who were aware of it, although not everyone was clear that this was the case in their own circumstance. Some individuals who had applied under special rules and were living with long term conditions were under the impression that they would indeed face future reviews but were not sure when or how frequently. On the whole, however, people supported the principle of no reviews, as this would reduce the burden on clients in the future:

“I think it should be the doctor [that] makes the decision on the person being terminally ill or not terminally ill. Once that decision’s been made, we shouldn’t have to jump back through hoops to turn round and get that person re-assessed as being terminally ill.” (Client, Application Route Unknown)

Again, one adult living with terminal cancer whose case had been transferred from DWP to Social Security Scotland/PIP to ADP) explained that they had welcomed the news of there being no future reviews:

“It seems that I don’t have an end date which is quite unusual and I’m actually - I’m actually very pleased. It’s very sad sometimes to hear the stories of people that are living with cancer that are having to fight and fight and fight for this money, you know, and they’re having to appeal things and what have you. I feel so blessed because I was transferred over and really no hiccups at all.” (Client, Normal Rules, Transferred)

The same respondent explained that the difference in the review process between DWP and Social Security Scotland with the special rules award had directly reduced their worry:

“Obviously, from my point of view, I’m delighted with that…because at review times, it’s a worrying time, you know, and there is a lot of worry behind, “Will they award it again? Will they not?” you know. So, for me, to see that takes away the stress of thinking about, “Oh a review date coming up!” (Client, Normal Rules, Transferred)

Among clinicians and support workers the principle of no reviews was also welcomed. The main reservation raised mainly by clinicians was what would happen in cases where someone awarded ADP, CDP or PADP made significant unexpected improvements in their health, or a new treatment became available to change their prognosis. Clinicians queried who would have responsibility for reporting a positive change in circumstances, i.e. the patient themselves, the clinician who signed the BASRiS, or the support worker who completed the application form.

A very unique issue linked to children in receipt of CDP was also raised. Support workers indicated a preference for them to apply for CDP under special rules where appropriate, as this can help to avoid complications when transitioning from child to adult benefits. For children who had applied under normal rules, it was suggested that there may be an issue of future reviews which could be daunting. It was also noted that payments would not be interrupted due to hospital stays, etc. Having a CDP special rules application meant that this process was much smoother, and also prevented families from having to apply for special rules ADP at a later date:

“It means that their Child Disability Payment, if they have a BASRiS form, will be paid until they die, so they could be 40 and still on Child Disability Payment because they will not get moved onto the adult version. And the main benefits - to help you understand - is that a Child Disability benefit, if a child goes into hospital or a person who’s on Child Disability Payment, if they go into hospital for more than 28 days, their benefit doesn’t stop. The adult version does.” (Support Worker)

An additional benefit to this approach was that, when a person on CDP passes away, the family receive an 8-week lump sum payment. Support workers reported that this was something that families often used towards the costs of funerals. This again was cited as a reason for wanting to ensure that all eligible children applied via SRTI where possible.

Appeals

The one participant who had successfully appealed an earlier failed application (the previous one having been submitted directly by them, and the appeal supported by a third sector organisation) explained that they had found the process lengthy and difficult:

“Well, to be honest…I filled in the form and the process lasted for roughly five months. It was really difficult. The first time it was rejected, and it was accepted the second time with a lot of difficulty.” (Client, Special Rules)

Another who had a failed application and was living with early stage Parkinson’s explained that they felt an appeal was futile. They also had concerns that it may act as a negative marker against them if they made a new/fresh application in the future:

“I thought there was no point [in appealing], you know. They’ve made their mind up and if you’re appealing against them, then you’re just going to rattle their backs up sort of style thing. So, I thought, well there’s no point.” (Client, Unsuccessful Normal Rules Application)

Clinicians gave no feedback on appeals and indeed some commented that this would be beyond the scope of their involvement with the process. Some support workers noted that most appeals that they had been involved with had resulted in decisions being overturned. In most cases, incorrect information had been submitted by the applicant themselves and this accounted for misunderstandings around their condition and its severity and/or how it impacted on their daily lives. Some support workers who worked with non-special rules cases also commented that the appeals process for those living with terminal conditions was typically more straightforward and easy - any issues were usually reconciled once a BASRiS or SR1 was made available with the correct date of clinical judgement.

Barriers to applying for eligible benefits

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)

Another adult living with early-stage atypical Parkinson’s also explained that they would prefer to keep working and apply again at a later date, for fear that the application could take a long time or not be prioritised under special rules:

“Along with everybody else in the country, I have other financial commitments that I need to keep. So, I’d rather try and keep going [working] as long as I could because I know the process can take up to 8 weeks if it’s not one of the illnesses that they class as immediate.” (Client, Unsuccessful Normal Rules Application)

One adult living with a long-term congenital condition also queried if access to benefits under special rules perhaps made it less likely that they would be able to find employment to supplement their income at times when they felt able/well enough to work:

“The thing that is really important for me is that £290 is not enough. It doesn’t cover the life expenses. I can’t afford anything and it is not possible for me to have a good life…Although I don’t expect anything from anyone, I know that I need to have a job and to work in order to be able to afford my life but, to be honest…I haven’t received any support regarding this need.” (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.

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)

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)

Some nurses and doctors also commented that patients who were financially stable or considered themselves to be “well off” often declined to pursue a BASRiS or SR1/DS1500, as well as those who had pensions:

“Quite recently actually, several people have said to me, “Oh no, I’m not going to bother applying for that cos I don’t need it.”” (Nurse Specialist)

Encouraging people to apply on the basis that their financial situation may change as their illness progressed was something that nurses and support workers felt was commonplace:

“They think they’ve got savings, so they won’t be able to qualify. Or they are terminally ill but they’re still working because they’re not ill-ill at the moment, but they have got a condition that’s going to progress. And they’re thinking, “Well I’m working, so I’m not going to get anything either.”” (Support Worker)

An example was given by one support worker of using the strategy of explaining to patients that they were unlikely to reach state pension age (given their diagnosis) and that, therefore, they should apply for state entitlements while still alive. The worker described this as a “black humour” approach, but one which often resonated with people and spurred them on to apply.

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.

Again, the very mixed practice in relation to signposting eligible adults at point of diagnosis was also noted as a barrier to applications for some (i.e. on the basis that some people simply were not made aware of eligibility). Support workers, (including specialist benefits advisors) in particular, highlighted that while some good relationships existed with some medical teams in hospitals, for example, others were less well established. While they were confident that there were direct referral pathways set up to benefits assistance or wider support in some wards/departments, this was missing in others.

Indeed, across the research there was no apparent ‘standard’ route by which people were made aware of eligibility and no ‘typical’ time in a person’s journey when this would occur.

Key takeaways

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