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

Contact with Social Security Scotland

Contact between clinicians and 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.

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.

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)

Contact with Social Security Scotland was also described in more favourable terms overall compared to contact with DWP:

“Scottish Social Security seems to be a lot more person-centred, and we seem to be able to get more information on the phone or be able to get hold of them on the phone a wee bit easier and they’ve got the Webchat that DWP never had either. So, there’s sort of little bits that make it a bit easier to deal with them than it did to deal with DWP.” (Support Worker)

A small number of support workers commented that speaking to people at Social Security Scotland ‘in person’ by phone was preferred over the WebChat function (which many found slower and less helpful).

More widely, among the clinician interview sample, there was also some negative feedback regarding the digital systems used by Social Security Scotland and their incompatibility with local systems being interpreted by GPs, for example:

“This is part of a much wider thing with Social Security where they tend to implement online stuff but entirely lose interest in actually making sure it’s accessible to people who need to be using it.” (GP)

A small number of clinicians (and support workers) mentioned that they would like to be informed by Social Security Scotland of the outcomes of applications where they had provided assistance, to support them in their onward contact with the patient and/or their family:

“Sometimes it would be nice to know, you know, like that the forms have been received - because it just goes and you’re just like, “Has it been received? Has anybody looked into it? How do we know?” Nobody’s contacted the family. The family are like, “What’s going on?” And then suddenly payments just appear.” (Nurse Specialist)

Similarly, a small number said that knowing the outcome would let them know if they were completing forms correctly and/or including too much or too little information (which would help them adjust/refine their approach to future forms):

“I don’t ever get contacted from them [Social Security Scotland] or by them because I fill in the right form. But I’m not sure, you know, I’m trying to follow their guidance. I certainly haven’t had anyone return to me but maybe that’s because I’m putting too much information on the forms…Ultimately, you never know.” (GP)

“I think what is difficult if I’m being honest is we don’t hear back, so we don’t get feedback. And so, I think what I’ve filled in is accurate and I think it’s clear and it meets that definition, but we don’t have any feedback.” (Consultant)

The latter respondent explained that they had concerns about whether the gravity of people’s conditions was always sufficiently well understood by those making decisions at Social Security Scotland (and who were, it was presumed, non-medically trained) based on the limited information that could be provided in one form. This was especially true, they suggested, for cases involving children.

Contact between clients and Social Security Scotland

Among clients and patients, where people had received help directly from Social Security Scotland in completing their applications (either at home, or via telephone/Teams) this had been very well received:

“I really appreciated it [help with the application from Social Security Scotland] because, otherwise, you know, sometimes if you fill in the forms wrong, it gets sent back and then you’re back and forth, back and forth. So, it was really helpful to have someone that helps people from Social Security. That’s what they do, they give people a hand to fill out these forms that are quite difficult.” (Client, Special Rules)

The same respondent who had received help from Social Security Scotland also explained that the accompanying information that had been sent to them ahead of their scheduled appointment had also been helpful and informative:

“The first part of the application form, they sent it through and it had a lot of explanations on it, you know, what the actual Adult Disability Payment was about, it wasn’t like means-tested or anything like that. So yeah, it just explained about it and how they would go about it, you know, whether it was a low, medium or high rate. Everything was sent through and then they said, once you’ve thingmied it [read it], we’ll arrange a day for you, you know, that suits you to do a Zoom call and help you fill out the actual application. I found it very, very informative and very helpful. Some things you didn’t even know, you know, odd wee things you would be reading and you’d think, “Oh I didn’t know that!” There’s not a lot of information out there and I feel that people are unaware of what they’re actually entitled to.” (Client, Special Rules)

Other positive feedback included comments that the “update” or “application progress” text messages from Social Security Scotland that they had received regarding the progress of their normal route applications had been welcomed:

“One other thing that I did think was really positive was getting the text message updates with your application…I thought that was good, as much as I thought it was a long process, and I will emphasise the long, I did think it was good getting the text message update.” (Client, Normal Rules, Recategorised)

The one client who was in receipt of PADP explained that they had made initial contact with Social Security Scotland after a friend suggested that they may be entitled to some assistance. This initial interview was described as “very good”, and the Social Security Scotland representative described as “very friendly, helpful and encouraging.” The Social Security Scotland representative had explained that the benefits were not means tested, and that the participant would be eligible for the new PADP benefit, which was only available in certain areas of Scotland at that time, but was being rolled out slowly.

While much contact with Social Security Scotland had been positive, several respondents cited barriers to them making proactive contact with Social Security Scotland in the context of checking progress with applications, or making appeals, etc. These included perceptions that the follow-up process was lengthy/protracted, and feeling judged if appealing decisions or chasing progress information:

“I don’t like to call them because, you know, I’m not patient enough to call them, to be honest, to follow up the process.” (Client, Special Rules)

There were also suggestions that it could be very time consuming and frustrating to try and contact Social Security Scotland with any queries related to ADP/PADP by telephone:

“Sometimes it can take forever because you phone up and you can be on the phone for about half an hour or 45 minutes at a time. It takes far too long for them to answer the phone. I think they need to have a better service and maybe able to get to the calls quicker or have an engaged tone if all the operators are busy. Because then, that way, you’re not listening to the boring music all the time and if they gave you an engaged tone when the operators were busy, then you would know to hang up the phone and phone back at another time...And then also you get to talk to someone and you tell them all your details but then they can’t help you and they’ve got to transfer you to somebody else and then you’ve got to go all over your details all over again. And I feel that is a complete waste of time as well.” (Client, Normal Rules, Transferred)

“It stresses you out as well. Well, it stresses me out the amount of times that you phone up and you get transferred to somebody else and you’ve got to go through all the security questions all over again and I just feel, this is awful the way that they do it.” (Client, Normal Rules, Transferred)

There were also indications among some clients that some staff within both DWP and Social Security Scotland perhaps lacked the empathy required when speaking with terminally ill patients, however, it was also recognised that this was difficult to achieve:

“Anybody that’s not had a condition like a life limiting illness doesn’t know, you know. They don’t know that the most simple things like fatigue…fatigue with a life limiting illness is a totally different fatigue from any other. And only the people that really know it, that suffer, get it. So, the people on the phone, as much as, you know, they’re doing their job and probably mostly respectful and whatever, they don’t totally understand.” (Client, Normal Rules, Transferred)

The main suggestion made by clients for improvements regarding contact with Social Security Scotland staff and information shared by them was to make clearer or more obvious the various supports that were available to help people with their applications, especially where literacy or other language barriers may exist:

“For them to obviously say that there is help out there for people that’s no good at filling out the forms - because there is people there like myself, you know, that struggles to read and write, you know, and understand the questions fully.” (Client, Unsuccessful Normal Rules Application)

One adult with a learning disability also commented that written communication could be clearer:

“When they [letters] come from Social Security or DWP, they should be a lot more easy read, they should take it into consideration that you’ve got a learning disability, they should know how the letters should be.” (Client, Normal Rules, Transferred)

The same client also suggested that they would prefer email communication from Social Security Scotland in some cases, instead of written communication as they found this quicker and easier to work with. They gave an example of where they had requested a copy of information from their file and had been advised that this must be posted (and would therefore take longer to arrive) than if emailed:

“There was one time I was needing a copy of what rate that I was on for something and I’d asked for them to send it to me by email, so I could get it quickly. And they turned around and said that they don’t have the authority to email you your documents over, which I feel would be a lot better as well if they did have the authority to be able to do that. Because then at least that way they could email you and it would also save on postage as well if people had an email address that they were happy to receive the emails, because then at least that way you’ve got the email and you can print if off yourself or you can save it, so you’ve always got it.” (Client, Normal Rules, Transferred)

This same respondent explained that they preferred to live in a ‘paperless’ environment and so discarded any written communications from Social Security Scotland. They felt that Social Security Scotland should be able to provide electronic communications wherever requested.

Contact between support services and Social Security Scotland

Support workers tended to have more regular contact with Social Security Scotland in relation to queries for individual applications, or following up on earlier applications, with most telephone contact described in positive terms. However, the main issue again was waiting times to reach the right person within Social Security Scotland to speak with.

Support workers did also reflect that waiting times for some of their clients were too long (for both normal and special rules cases, especially if applications had any kind of administrative error or gaps contained within them which needed clarification), and possibly getting longer as Social Security Scotland became responsible for more devolved benefits:

“When they first started, you were getting through really quickly. But, I would say it’s probably about 45 to 50 minutes [now]…But, you know, I’m fit and well, I can’t imagine somebody who’s ill coming to spend that length of time on the phone, maybe just ask for a claim form or just to give them a piece of information like they’ve gone into hospital. That will be really difficult. So, yeah - the call waiting times are getting longer and longer.” (Support Worker)

“A lot of families are telling us they just can’t bear phoning up Social Security…because they’re in such high demand. I always say to somebody if they’re having issues phoning Social Security Scotland to phone Welfare Rights because they do act on their behalf and they help them out. Social Security Scotland are good, are very good, it’s just getting through to them that’s probably one of the most difficult challenges for people.” (Support Worker)

Support workers also reflected that it was very challenging to try and get through to Social Security Scotland when sitting with a client (in their office or at home) and this underscored the importance of having a third-party mandate in place as soon as possible for special rules cases:

“If you’re with somebody and trying to phone them while you’re with somebody, that’s really difficult, which is why the mandate is probably quite good. I try and get that done right at the beginning and send that in…so that it’s me that’s got the call…I came in early this morning and I phoned about half past 8 and it took till 5 to 9 to get the phone answered…so I was able to just put the phone on speaker phone, do a couple of emails and do some other stuff this morning until that phone call got answered.” (Support Worker)

As with clients, support workers noted that Social Security Scotland were very good at providing updates with regards to applications. Some also commented that this was markedly better than contact from DWP on the same issues:

“Scottish Social Security are good at writing out and telling people, “We’ve got your information, we’re going to be in touch” - their messaging’s very good at each step of the way. DWP side of it? I’m not sure how good they are at saying, “We’ve been updating this, therefore we’re passing things over.” From experience, I’ve seen better messaging from Scottish Social Security than I have from DWP on that one.” (Support Worker)

Suggestions for dedicated Special Rules contact routes

Across all respondent samples (clinicians, clients and support workers) there were suggestions for a dedicated Social Security Scotland telephone number or helpline specifically for special rules cases. All SRTI applications (or normal rules applications identified as SRTI) are already handled by a dedicated team (as well as cases where a change of circumstances is reported by someone with a terminal illness diagnosis), however, this did not appear to be widely known. A dedicated team and/or phoneline was seen as justifiable both in terms of the sensitivity required by those handling special rules cases (i.e. Social Security Scotland staff with special training would be useful) as well as ensuring that when people did reach Social Security Scotland the person they spoke to was “the right person”:

“There should be a dedicated team on the phone to deal with Special Rules terminal illness quicker cos, when I do phone, it’s 45 minutes at least. Sometimes I’ll go through webchat quicker, but I think it should be a quicker option if you have a BASRiS or if you want to apply for the first time.” (Support Worker)

Those working with sick children stressed that this would be particularly helpful:

“The one thing is about Social Security Scotland is we don’t have a direct line to the terminal illness team and I really feel that would make a huge difference. One of the things that we can do is phone up and say, “This child has a terminal illness, please contact this person and they will give you a verbal BASRiS form”, but we spend half an hour getting through, when you reach that person, that person doesn’t work in the terminal illness team, they don’t know what you’re talking about.” (Support Worker)

Requests were also made for a dedicated “call back” service whereby professionals following up or returning earlier contact from Social Security Scotland could get through quickly (as many staff worked part time and/or spent their time in appointments with patients/clients and were not always available when Social Security Scotland called to speak with them). There were also suggestions for a similar “call back” service for very ill clients (who were often at regular hospital appointments and therefore likely to miss calls made to their phone) whereby appointments could be made for a specific date/time to speak with a Social Security Scotland advisor:

“I think what would perhaps help would be like an appointment booking service to say, right, you leave a short message, you know, and you’ll get a ring back - somebody books you in, that kind of thing.” (Support Worker)

On a similar note, several support workers also called for a dedicated escalation route for BASRiS cases, to support where there was a change in circumstances or where a query needed to be raised/addressed with urgency:

“I think that’s the biggest issue that I find, is that there isn’t an escalation point like we’re used to having with DWP…We’ve been told several times that their stance from the off was that it shouldn’t be necessary, we don’t need to have that…But I think the reality of the situation is that, for us as advisers…it would be nice to have a person or a department or something where we can try and expedite those queries or those issues for that person, if that makes sense. That’s the only thing that I would say is missing from what we do.” (Support Worker)

While SRTI cases are in fact currently prioritised and ought to be passed quickly to the relevant specially trained team within Social Security Scotland, this again did not appear to be widely known. The perceived absence of such an escalation route was seen as the main weakness for Social Security Scotland when compared to DWP, for whom clear escalation routes were in place and were known about.

Key takeaways

While roughly half of clinicians had been contacted by Social Security Scotland in the preceding 12 months as a follow-up to provide more information on a BASRiS, only half of these again had followed up this contact by submitting a physical BASRiS form, with many instead noting that they provided BASRiS forms to other support organisations to assist with applications rather than submitting them directly to Social Security Scotland. While telephone contact was mentioned as the main contact route being used, the majority of clinicians expressed a preference for contact by email. While direct contact with Social Security Scotland was fairly minimal among clinicians and clients, where people had had contact, this was mainly described in positive terms. Clients in particular had welcomed the direct and person-centred support made available to them by Social Security Scotland staff when making applications. Support organisation staff generally had more direct contact with Social Security Scotland, and again feedback was mainly positive. Complications mainly occur for ‘non-standard’ cases where clients are unsure of their position (including where someone has already started or submitted a ‘normal rules’ application and/or if they are unsure of where their application is in the system and whether a new one should/should not be commenced) and applications for ‘new’ clients appear to be smoother and be processed more quickly in the main. The main areas where communication could be improved were linked to the perceived benefits of having a dedicated SRTI helpline and escalation route which was easily accessible to support workers, as well as the possible extension of the ‘allow list’ to include more support organisations. Overall, feedback in relation to contact with Social Security Scotland was positive, with many commenting unprompted that their experiences compared favourably to their contact with DWP, where they had experience of both.