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

Impacts and outcomes of SRTI

Impacts for applicants and recipients

Reduced pressure on household finances and money related stress

The main positive impact reported by clients was a general increase in their household income which in turn supported their current wellbeing. This was allowing people to:

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

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

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

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

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

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

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

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

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

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

“I’ve been able to reduce my hours at work and also just basically given me peace of mind.” (Client, Special Rules)

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

One applicant explained that having a copy of their diagnosis had been helpful in them securing paid time off work as their illness progressed, because, again, they perceived that without such paperwork, people may question their integrity:

“I’m one of these people that I like to dot the Is and cross the Ts, so I asked for a copy of my diagnosis. I asked for a copy of that in writing and I got it in writing, which I was able to add to my application, which helped me. But I wanted it to be able to give my work as well, just to sort of make sure that they knew what was going on, if that makes sense…and that I wasn’t taking the piss…I’m not a liar but I just wanted them to know that I was being genuine.” (Client, Normal Rules, Recategorised)

Improved independence, control and quality of life

Respondents spoke of feeling “grateful” for the financial support they received and indicated that this was helping to maintain or improve their quality of life:

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

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

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

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

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

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

Access to wider support and entitlements

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

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

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

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

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

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

One respondent did note that while an ADP/PADP special rules award was not reviewed, some other services/supports (which are automatically granted based on a person’s ADP/PADP award) were. They found it “strange” that the same person with the same diagnosis who had no reviews for ADP/PADP would need to undergo continuous reviews for some wider supports, including the Blue Badge. A way of removing future reviews for these additional services/supports in cases where a terminal illness diagnosis had been received was seen as something that would be helpful and could potentially be linked to the BASRiS system.

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

Awareness of the system

Another positive impact for clients had been an increase in their awareness of the benefits system per se, and the different types of assistance that were available to people, both themselves and others. There were indications that the general public may have poor or limited understanding of entitlements and some suggested that more could be done to raise awareness for those in a similar position to themselves:

“There is a lot of benefits out there that people can have and a lot of things that you could probably apply for but they don’t…You know, because you don’t feel you’re entitled [and] you don’t know how to go about it. I’m sure the Citizens Advice and things like that, if you went and asked them, or phoned up the Social Security, they would tell you, they would be able to tell you what you’re actually entitled to.” (Client, Special Rules)

One person who took part in the research said they had used the information they had learned about Social Security Scotland and the benefits system during their own application by sharing it with others who were part of an online discussion forum for adults living with terminal cancer. They had been able to use their experience to educate and help others, which they suggested was an unanticipated (but positive) outcome.

Trust in Social Security Scotland

Few clients proactively mentioned feeling that they had been treated with dignity, fairness or respect by Social Security Scotland, however, when prompted, some confirmed that their experiences had been positive and had reflected these principles.

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

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

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

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

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

Impacts for clinicians

Workloads

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

Table 13: Reported impact of BASRiS on clinician workloads (clinician survey)

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

In interviews, most clinicians reported that the BASRiS form completion was not adding significantly to the workloads of staff, mainly because they were not needing to complete them on a regular basis/complete a high number. Comments were also made, however, that if they had to complete the forms more often or for a larger number of patients, this would indeed have negative consequences for workloads.

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

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

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

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

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

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

One clinician even discussed using their own time to ensure that families were not missing out:

“I mean, I think the reality is it is an additional part of our job that is not identified…The willingness is always there, as you’ll find across the NHS, to be able to do these things for families. But if I’m being honest, it often gets done at the end of the day in the evening, like outside of my working hours, because it’s something that I can then sit and do like when I’m not seeing patients.” (Consultant)

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

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

In relation to the BASRiS form, the same GP noted that not only was the extra time too much to ask, but the remuneration for doing so was too little:

“We’re paid so little for it, you know. We would charge an insurance company £350 for this amount of information, you know, what’s been given to us? I think it’s £30 is what we get, something like that. That wouldn’t get you 5 minutes of a GP’s work…I can only imagine the Scottish Government are disappointed there aren’t more of these being put in, but this is why. We are probably selectively using them because they are a lot of work.” (GP)

It should be noted that, across the interview sample, only RMPs gave specific feedback regarding payment for completion of the BASRiS form, with some commenting that they perceived this not to be a good use of their time.

RMPs were also the only group for whom there were self-reported indications that a reluctance to fill in forms may mean that not all eligible patients were being appropriately signposted:

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

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

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

“I do wonder whether, in the future going forward, if somebody has a clinician letter that says they’ve got this diagnosis, they shouldn’t automatically qualify. I mean, you’re almost like, why do you need to fill in a BASRiS form? Because they’re not asking us for a deadline date of when this person’s going to be here or not be here. They’re saying, have you got a condition that fits these criteria, and if somebody has absolutely from the clinician got a letter saying [that], then should they need to fill in a BASRiS form or should that not be enough to just get the person to send that letter to Social Services Scotland?” (Nurse Specialist)

While a clinical letter will currently be accepted by Social Security Scotland as an alternative to a BASRiS/SR1/DS1500 (provided that it is accompanied by a precise date of clinical judgement), such feedback suggests that this was not widely known.

One consultant also suggested that there may be other staff better placed to assist terminally ill individuals in accessing benefits after a diagnosis had been made and felt that this should be an automated process, especially for children:

“When a child has been given a diagnosis of a life limiting condition, that should be the role of the social worker. Now, let’s review what allowances this young person and their family are entitled…I don’t think you need to invent any new mechanism. It should just be there.” (Consultant)

Increased autonomy, responsibility and accountability in decision making

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

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

“And I think, at the beginning of BASRiS, I was a little bit anxious about filling in the form and thinking, should I be doing this for this person because, we’ve been so used to the DS1500 and that fairly strict sort of guideline about timelines and things. I say, oh I don’t know, this person might be dead in 6 months, but they might still be here in 3 years. And so it is always very difficult to sort of make that judgement call.” (Nurse Specialist)

This latter respondent also explained that the responsibility extended to not wanting to be seen to be too relaxed with the rules but also not wanting to be too strict. This meant an increase in the need for considered ethical judgment:

“I feel ethically I need to be clear that, if I’m applying for something on somebody’s behalf, they generally fit that criteria, you know. I think people should get what they’re entitled to but I’m not in the game of manipulating the rules to get somebody something they’re not entitled to either.” (Nurse Specialist)

As above, some also expressed concern that they were unsure where responsibility sat in cases where new information emerged regarding someone’s condition that may make them ineligible. The potential for “blame” was discussed and some clinicians felt that there was a lack of clarity around who was responsible for notifying Social Security Scotland of changes in circumstances and the need for future reviews:

“If I complete a form and then 6 months later out the blue, genetics turn up a diagnosis, that we get more information about that would suggest that the child is no longer has a terminal condition - what is the obligation then - cos that wouldn’t necessarily always filter down to me. That might take months for that to come to me. Do you know what I mean? What is my obligation then to remember, “Oh I did that form for them and I need to then go back” I would have no idea who to contact, etc, or how to go about that. I’ve never had to do that before but there is a part of me that thinks, do we have any obligation to review that? Is the review of that then taken on by, you know.” (Consultant)

This again was an area where the increased autonomy and flexibility in the system had made clinicians feel a greater sense of professional vulnerability and unease.

Impacts on the patient-clinician relationship

One GP also commented on how the open-endedness and absence of a life expectancy timescale attached to the Scottish terminal illness definition potentially opened up medical professionals to being questioned by others for providing subjective assessments. It was suggested this could be damaging to patient-doctor relationships, and relationships with the relatives:

“It produces enormous challenges…I remember seeing a patient [and] I said to the daughter, “I think she’ll be dead within a month.” The daughter complained to the nurse - not a formal complaint - that I’d said she would be dying in the next month. She did die in the next month. I was right…In some ways, the prediction comes with a lot of emotional distress, as you can see by my example. When you are predicting death, relatives want to know that you know what you’re talking about.” (GP)

As highlighted previously, this was not unanimous, however, and others felt that the removal of the 12-month life expectancy in Scotland made conversations easier with patients compared to the legacy DWP rules:

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

Indeed, one clinician noted that this improvement to the patient-clinician relationship was an illusory benefit of the new system, i.e. by not having to raise any prospect of limited life expectancy, they could reduce worry to patients:

“I prefer it to the 12 month thing which always made me feel quite uneasy in part because you tend to have a conversation with a patient and say, “We’ve got to fill it in as 12 months” and then you have to say to them, “But actually I’m not sure about it being 12 months”, you know, “I can’t be sure about 12 months.” And yet, for the patient then, 12 months is ringing in their head ever after.” (Consultant)

Impacts for support workers

Improved comfort in eligibility discussions

For support workers, one of the biggest impacts was on the discussions that they were now having with applicants/patients regarding their eligibility. For some, these conversations were easier as there was no need to explain to the person that it was their short life-expectancy which made them eligible. For others, however, there was added work in reassuring people that despite the benefits being labelled as ‘special rules for terminal illness’, this may not necessarily mean a short prognosis:

“There is a certain amount of conversation that has to be had about reassuring people that, actually no, this is a really positive change that’s been made by the Scottish Government removing that time frame out of there and changing that kind of wording and making them realise that, you know, the help is there from the beginning as opposed to the DWP when it was only there at the end.” (Support Worker)

This echoed the views of some clinical staff, but was definitely more pronounced in the support staff sample.

Training and supporting medical staff

An additional impact for some support workers was their role in needing to provide more information, support and clarification to their clinical colleagues since the new rules had been introduced. For example, this included answering questions from GPs who may get in touch to query why someone had requested a BASRiS on the advice of a benefits advisor. Indeed, some noted that, since the new BASRiS form was introduced, they had offered informal training or networking events to try and raise awareness of the new rules among medical colleagues, to try and reduce extra work for themselves and others down the line:

“[We] made the decision to invite the specialist nurses and some of the support workers over and we had a wee chat. We just did about three sessions I think, we did one online and two in the centre and we just had a chat about all the changes and things like that. And that helped and it’s helped in most of the departments, but I can tell the ones that didn’t come over are the ones who I still have the problems with at the end of the day.” (Support Worker)

“I don’t know what can be done but certainly, on a local level, we try and educate and ask [GPs] to look at the criteria and think of the criteria when they’re thinking of the patient…There’ll be lots of conditions whether it be, you know, end stage COPD or end stage heart disease or whatever where they still won’t think about doing a BASRiS for people.” (Support Worker)

“Especially in smaller GP practices, where they’re not 100% clear on what the Chief Medical Officer’s guidance is. So, we have a sort of email draft that we can send out that’s got the links to everything that attaches the Chief Medical Officer guidance, that breaks it down what a BASRiS is, what an SR1 is, where they would both be appropriate. And we send that out to the practice with an offer that we can do a Teams when they have a practice meeting or talk to the practice and have a chat through it. So, we’re very proactive in making sure clinicians are aware because, you know, some smaller surgeries might not see many people that are coming in that qualify for BASRiS.” (Support Worker)

Mirroring feedback received from some clinicians, several support workers highlighted that they had seen an increased reluctance among medical staff to sign off the new BASRiS, and they were keen that this be addressed:

“There’s still a wee bit of reluctance between some of the medical team to sign that form. I suppose going back to that thought with the old DS1500 where some medical professionals didn’t like signing the form because they felt that people would then assume that they were being written off and assume that you’re going to die soon anyway. And they’ve still got that mentality about it, about the BASRiS, and they haven’t quite realised that, actually, it’s a much broader form and they removed all the time frames and things like that. So, yeah, there’s still a reluctance between some of the old school medical team, I would say, to sign that off.” (Support Worker)

The reluctance was again seen as being linked to confusion around the breadth of people who were eligible and that someone did not need to be dying imminently to be provided with a BASRiS form:

“I think the main challenges, as I say, is getting some of the medical teams to realise what the BASRiS actually represents and also how, by signing that, they’re not signing somebody’s death warrant but what they are giving them is some financial help that might just make things a bit easier for them for the next couple of years.” (Support Worker)

Support workers noted that this extra training and encouragement was not necessarily needed across the board. Rather, it was felt that discrepancies in understanding between different medical teams/departments/specialisms (with those working with some conditions having much greater awareness than others) was something that needed to be ironed out where possible.

Impacts on perceptions of Social Security Scotland and the benefits system in Scotland

While most support workers and many nurses felt that positive client/patient experiences had resulted in greater trust of Social Security Scotland and the benefits system, the evidence collected from GPs in particular pointed towards a weakening of trust (for some) who felt that the current system was more obscure than legacy systems. A small minority also indicated that they felt the new rules for terminal illness were unwieldy, unnecessary and designed to put pressure on clinicians:

“The reason why they have to have a special form is because it takes months for them to process even barn door claims. The whole system is designed to be slow and clumsy - the DS1500/BASRiS are supposed to bypass the rest of the system. They could just let patients or non-clinicians claim and then collect info from us as needed as they do for everything else. But their processes are too clunky, so they need a whole different approach which seems to put the onus onto clinicians to claim for people.” (GP)

Where negative impacts were described by clients, these were mainly linked to unsuccessful applications or lengthy/protracted normal rules applications (which preceded a successful award under special rules) which had left the client feeling that those reviewing their application were not to be trusted, and a resulting impact of distrust in the system:

“Without sounding horrible, they’re sitting in an office, they’re going over your paperwork and it’s based on what you’re putting down and if you’re not putting down exactly what their criteria is, then you’re not going to meet anything. And it’s how you put down that. You might not be putting it down 100%. In my mind, I was as clear as I could possibly be with it [the application form]…And it all depends on the mood of the person at the other end.” (Client, Unsuccessful Normal Rules Application)

A different applicant, who was anxious about potentially not meeting the criteria for a possible future special rules application explained that they also had anxieties linked to the time it may take to process and what they would do in the interim period to support themselves financially (not realising that the timescales would be very short):

“It’s actually quite worrying because I might not meet it for immediate payment, you might have to wait 6 weeks - not 6 weeks, 8 weeks, 2 months, 3 months. But we’ve all got commitments to make in that time…You know, we all have rent to pay and things like that, so it’s actually quite a worrying time for me... How am I actually going to stand and survive in that time? Cos we’ve all not got savings.” (Client, Unsuccessful Normal Rules Application)

Other applicants also explained that, despite being grateful for the support available, being reliant on benefits assistance made them anxious, especially in cases where they had no previous experience of being unable to work to support themselves:

“I’ve never not worked. From 16, I’ve never not had a job and then, to go from a job to being ill and not being able to work, it’s quite a frightening thing…For me it is anyway.” (Client, Special Rules)

Wider support to help people adjust to their ‘unemployed’ status was called for to help people make the psychological adjustments required by their new income status.

Some clients reflected on their own experiences and felt that access to disability assistance under special rules could potentially be made even easier if automated and taken out of the hands of the terminally ill individuals themselves, i.e. an automated process or something that required very little by way of input from the applicant themselves. This may help to reduce worry or stress experienced by clients even further and have a positive impact on the overall experience and speed of the journey perhaps:

“I would say anyone who has a terminal cancer diagnosis, regardless of what it is, should automatically get the BASRiS form. And, again, that’s purely my opinion…You’re dealing with things that you’ve never had to deal with, that you’ve never thought you’re going to have to deal with, you know…You’re driving home from the hospital, and all that’s going through your head is how do you tell your family? Never mind, how am I going to afford to live?” (Client, Special Rules)

“I just think anyone who’s given the positive cancer diagnosis that they have cancer, I just think they should automatically qualify for that. Because the fact you have to spend - like, I’ve probably spent about 45 minutes to an hour on that application and then you’re waiting on that result, you’re getting phone calls in between, them asking you different questions because you’ve maybe not answered a question properly because it’s how you’ve understood it. I think - I mean, the government probably won’t like me for saying that but I think, as soon as you get a cancer diagnosis or a life-threatening diagnosis, you should automatically qualify for Adult Disability Payment, even if it’s just for a short term, just to give you that peace of mind while you’re dealing with everything else that you’re dealing with.” (Client, Normal Rules, Recategorised)

One client suggested that they would like to see Social Security Scotland deal with more benefits, so that those with both Social Security Scotland and DWP accounts had only one organisation to deal with. They gave the specific example of concurrently being in receipt of ADP and Universal Credit and explained some of the problems this entailed. This was endorsed by several support workers who also noted that there were some complications for those receiving both ADP under special rules and Universal Credit from DWP:

“The only thing I would say is it would be good if the Scottish one dealt with your Universal Credit or any other benefits, that it’s all in one…When I was on PIP and it changed over to the Scottish one, to ADP, it all went through automatically and you didn’t have to do anything. But people that’s on ESA [Employment Support Allowance] that’s all now changing over to Universal Credit, I’m in the middle of going through the changeover just now from ESA over to Universal Credit, the migrate thing or whatever. And you’ve got to fill in forms and you’ve got to do it all online and I’m having to get support to do it because I’m no good with filling in forms online and how they ask you so many different questions. I feel that if they were able to change PIP over to ADP, they done that without any hassle, without you having to do anything, why can’t ESA change you over to Universal Credit automatically so you don’t have to do anything, because it’s a lot more stress that you don’t need.” (Client, Normal Rules, Transferred)

Some of the language used by applicants also hinted towards scepticism that others like themselves might not be believed by Social Security Scotland when making applications, and therefore may try too hard or provide too much evidence to try and justify their eligibility. This was seen as being more likely for people living with conditions or an illness that was not sufficiently advanced so as to be visible to an independent observer:

“Cos a lot of people don’t understand it, you know. To look at me physically, you’d think I was fine.” (Client, Special Rules)

Although in the minority, some clinicians also felt that the current BASRiS was designed in a way which made them feel they were not trusted by Social Security Scotland:

“It makes me feel like they don't trust GP judgement and we are trying to convince Social Security Scotland of our opinion.” (RMP, Clinician Survey)

Although not a direct reflection of trust in Social Security Scotland per se, some clients did express views that there was a potential for the system to be misused. While applicants welcomed the new flexibility introduced to the system by removal of the 12-month life expectancy, there was also some scepticism that this made the system more vulnerable to abuse:

“I suppose I know that if there was a change in circumstances that I had an obligation to contact the DWP, and I am quite an honest person and I would if there’s a change. But I don’t know that everybody would be - I’m probably again…a bit sceptical about whether people would actually do that. I would but whether everybody would or not, I’m not sure…I would love to be able to turn around tomorrow and say, “I don’t need it anymore cos I’m cured.” I would much rather have my health than the money…and maybe the vast majority would. I’m just not convinced that everybody would be so honest and come forward and say that they were in a better place.” (Client, Special Rules)

Overall, however, the complexity of the benefits system was highlighted as the main reason why some were sceptical or mistrustful towards it.

Hidden populations and those not being reached

There was consensus (especially among support workers) that the new rules were assisting both in reaching more patients and benefitting them more quickly:

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

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

Across the research, however, there were also some comments that better or earlier awareness raising for clients would be appropriate. It was felt that the absence of this had perhaps had some negative impacts in terms of people’s trust in the system as a whole (although linked mainly to early signposting during contact with health professionals):

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

The current reliance on ‘word of mouth’, chance or luck in reaching/having access to knowledgeable clinicians and support organisations to signpost people appropriately was seen as unfair and unacceptable as the status quo.

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

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

As a result, although the new BASRiS system was designed to ensure that the number of people receiving support was increased, proportionately, the new system may be reaching fewer eligible individuals, as the scope was now wider.

Another issue linked to long term non-curative illnesses included the observation that many patients will cease to have regular contact with a medical professional in the months and years following their diagnosis. This was especially true for those living with Alzheimer’s disease, for example, where an initial diagnosis may be dealt with by the prescription of drugs to help slow down the disease, but which was nonetheless incurable. Where patients with an Alzheimer’s diagnosis responded in an acceptable way to such mediation and became ‘stable’, and where no further reviews of medication were required, there may be no obvious point in their onward journey which required them to revisit or recontact medical staff. This may mean that they were unlikely to receive regular updates on the progression of their illness and were unlikely to know (either themselves or their carers) once the disease reached the stage where it might be considered ‘terminal’. Many living with such degenerative diseases may also find themselves living in care homes, nursing homes or other supported accommodation as their condition progresses and therefore their carers may not perceive that they require or are entitled to additional financial support. Those living with neurological conditions were also unlikely to have capacity to understand once the disease progressed to the point where an application for benefits under special rules was more likely to be processed:

“There might be people that are out in the community who are non-curative, I would say sort of non-curative manageable, so it’s not that they’re really needing any services, they’re just out there living with the diagnosis. Those are probably the group of people that miss out if their GP isn’t aware of it or if they’re not really seeing anybody cos they’re just sort of stable. So, yeah, they’re the ones that could have been on it months ago and they didn’t realise.” (Support Worker)

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

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

A way of Social Security Scotland being able to carry out retrospective checks was suggested. This should review people already in receipt of standard ADP, PADP or CDP where the progressive nature of their condition would make them eligible for benefits under special rules, to ensure that they were not being missed.

Some also noted that due to the lack of clarity around the definition, there may be vast numbers of patients who were not being picked up by the system as yet. It was posited that this was something that was largely accounted for by clinician uncertainty about diagnosing palliative illness:

“We work with a lot of people who probably don’t get access to it because nobody recognises that they might not survive, so there are probably lots of people with no malignant disease, you know, people with COPD, heart failure, renal failure, diabetes who are in this bracket that we don’t actually acknowledge them as being in their final stages of their diseases. So, I suspect there’s a huge group of people that we just don’t acknowledge are dying but are.” (Specialty Doctor)

“We’ll have a huge cohort of people out there not recognising that they’re non-curative and there’s lots of different language used, like terminal, non-curative…there is a lot of people that’ll be out there that just won’t recognise that within themselves that they’re eligible unless they seek out benefits advice.” (Support Worker)

Key takeaways

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