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

Awareness of Special Rules for Terminal Illness in Scotland

Awareness and understanding of the terminal illness definition

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

In interviews with clinicians, there was also evidence, even among those working with terminal patients on a daily basis, that the definition was not well understood:

“I’m not 100% sure on the legal definition. But I understand it’s under 12 months. Is that right?” (Nurse Specialist)

“It’s inherently a bit vague but, you know, does it seem to be serving the purposes we want? Are people who are severely unwell able to access things?” (GP)

“I don’t know about that change at all. I’ve not read anything about it. It’s probably somewhere on the BASRiS form but I’ll be honest with you, who’s got time to read that.” (Nurse Specialist)

Among those who did understand the definition, some were supportive of the change in Scotland, and some were not. Those who supported the definition did so on the basis that it provided additional flexibility for practitioners in assessing eligibility:

“I think it’s been left - maybe that’s the wrong word - but I think it’s been left open enough, so you can interpret as you need to interpret it. I think it’s a better way of doing it.” (GP)

Others who were familiar with the definition specifically noted that they found the definition vague or difficult to understand:

“And their desperate attempts to try and avoid excluding anybody who might possibly benefit from it just left it incredibly vague and is still vague, you know.” (GP)

Removal of the 12-month life expectancy timeframe

The main concern regarding the definition was the absence of a timeframe for anticipated death, which several practitioners felt added unnecessary confusion to a system that had previously worked well. Having a 12-month expectancy had provided a rough framework for practitioners to work with and having the timeframe had also made them feel more confident in their prognosis predictions. With the timeframe removed, there were views that people would need to accept practitioners’ views as being more subjective, and possibly less reliable:

“It makes it much more difficult [removing the 12-month life expectancy]…Well, the nearer you get to when people die, the easier it is to predict. You’re into terrible, very difficult, territory if you’re trying to predict something 12 months in advance…This is a professional’s best guess. Not an unreasonable thing to ask. You just need to remember it’s a best guess.” (GP)

“The terminal definition used is far too vague. Any 'incurable' condition is being taken as 'terminal' even if patient may live for more than 10 years with the condition! We are all terminal from birth! There needs to be an expected life span of less than 6 or 12 months.” (RMP, Clinician Survey)

Challenges were also noted with the absence of clear guidance around what kinds of conditions the definition may relate to:

“It could be clearer. I don’t really know in what way…I think it’s good that the time frame is not there because people do suffer great disability with cancer but might live for 18 months with that disability and [so it] most definitely benefits these people. But it did take me a few weeks, you know, to try and get my head round it. So, yes, it could be clearer. I can’t really specify in what way, just I think once I’d read it a couple of times, I realised that it [the illness] was more about how it was impacting on people’s day to day life.” (Nurse Specialist)

“There’s a big grey area and it’s genuinely very difficult to, you know, to be specific because we just don’t know - the number one question people ask when they get really sick is, “How long have I got?” We’re never able to answer that properly and I think the suggestion was made of - would I be surprised if this person died next week? People die and our ability to predict it is very small. When you say, would you be surprised, what does that even mean?” (GP)

Subjectivity around eligibility was also seen as being compounded by the fact that new treatments were becoming available on a regular basis, and some conditions were highly unpredictable:

“There are lots of biological treatments now particularly for malignant melanoma which prolong life. So, the prediction of length of life in someone with a terminal illness, we’re talking about cancer here, is much more difficult to predict now…If the definition comes up for everything else, that’s so wide and so unpredictable, heart failure, multiple sclerosis, neurodegenerative diseases, Alzheimer’s - the prediction there if the definition doesn’t have a time limit is pretty difficult.” (GP)

“You could have someone that’s got, as I say, by the World Health Organisation definition of terminal illness but, you know, could have a very long and fruitful life because of modern medications that are coming out these days.” (Nurse Specialist)

Across both the clinician survey and interviews, there was also evidence that the definition was seen as muddying the existing landscape and offered yet another definition which could cause confusion to all concerned:

“…having a unified definition would be more appropriate and create less confusion for patients, their families and health/social care professionals.” (RMP, Clinician Survey)

Definitional issues linked to progressive conditions

Clinicians noted that those with certain neurodegenerative conditions were sometimes among the hardest to diagnose. This was because there was no clear diagnostic test available, meaning it takes time to be certain about a diagnosis, which can also, therefore, delay submission of a BASRiS application:

“I guess if you talk to other people who work with people with neurodegenerative conditions, they haven’t all got a very clear diagnostic test. So, it’s a clinical judgement diagnosis and so that always makes it slightly tricky…And sometimes the consultants - you know, I see patients in 2 or 3 clinics that might be 3 to 6 months apart before we pin our colours to the mast…and so, that person has potentially had, you know, 6 months, 9 months, a year…before we go, we’re as confident as we can be. And it’s probably not until we’ve reached that point that I would feel comfortable putting in a BASRiS form.” (Nurse Specialist)

Some clinicians who had followed changes to the terminal illness definition over time, and the development and implementation of the BASRiS process since its introduction, also felt that both had been too heavily shaped by stakeholders working with palliative patients/those with terminal cancer for whom the criteria for eligibility were more clear-cut. The inference was that the SRTI policy and BASRiS requirements were more easily mapped against the journey of someone living with terminal cancer compared to other conditions, with suggestions that some of the assumptions regarding identification and referral of eligible patients were underpinned by those with experience of working with cancer patients. This may have led to some of the more nuanced and complex decisions or challenges presented by SRTI having not been sufficiently well thought through.

Where people did welcome the Scottish definition, this was particularly the case with terminal illnesses that were likely to last beyond 12 months and where the English system had been seen to be problematic:

“The disease that I’m dealing with in particular is very rapid and, you know, the majority of people will die under 12 months. However, sometimes it does surprise us and we have had issues. Not with Scotland funding but with the English funding particularly around that 12-month window where they look to try and remove it all and if the patients survive 12 months, I can be assured that the period after 12 months is going to be really rough for them. So, the fact that they’re having to fight for benefits and access to stuff is pretty - it’s pretty unjust really.” (Nurse Specialist)

Those working with children for whom conditions were also likely to extend beyond the 12 months also particularly welcomed the removal of the life expectancy timeframe:

“I think specifically for children, that is really helpful because I would say that, actually, particularly children with non-malignant and non-cancer diagnoses, their trajectory through an illness is much harder to predict and so, actually, that 12 month time frame is not helpful in children’s palliative care, if I’m being totally honest actually. So I think actually removing that is helpful then, now that you’ve clarified that. I think that is, yeah, 100%.” (Consultant)

It should be noted, however, that some different practices were noted in relation to children, with some practitioners stating that they would always consider completing a BASRiS for a child living with a life limiting condition, and others saying that they would not (especially if the child was likely to have a longer-term prognosis). Support workers also commented that it could sometimes be challenging to find doctors willing to sign off a BASRiS for a very young child:

“I think the thing is when you do get the right person, they’re happy to sign it but it’s that kind of search for the right person - for someone willing to take that decision…Obviously there’s a huge support for filling in BASRiS forms and we’re trying to explain that to people, you know, “There’s a clinician’s helpline, you don’t even have to do a physical form, you can make a telephone call where they’ll take the information from you”. There’s just that reluctance and I don’t know why it is.” (Support Worker)

Some also noted that the definition would (even if not already) help more patients in the future, and that until now staff were perhaps using their own 12-month guide to determine whether or not they might encourage and assist a patient to apply:

“I’ll be honest, we wouldn’t initially be talking about benefits until we felt like they were in the final 12 months of life. But because that’s now changed, that’s going to be really amazing for them.” (Nurse Specialist)

Overall, while some practitioners were unclear on the definition, and while some felt that the removal of the 12-month life expectancy had introduced challenges, an equal number felt that it had helped with prognosticating.

Differences in awareness among populations of interest

In comparison to clinicians, support workers were very well versed on the definition, most likely as a consequence of their more regular interaction with the benefits system. They were also more likely to welcome removal of the 12-month rule, as this opened up accessibility to a wider group (again especially those living with long term non-curative conditions). It was noted again, however, that not all medical staff shared this view:

Most clients who were interviewed were not aware of the difference in terminal illness definitions between DWP and Social Security Scotland but, when prompted, agreed that the Social Security Scotland definition was better as people could often live with terminal conditions beyond 12 months.

Clients were generally supportive of the removal of the 12-month life expectancy definition and considered the Social Security Scotland definition of terminal illness to be better and more supportive than that used by the DWP:

“If I lived in England, I would probably be really, really upset at the fact that I’m not getting the help that I need and deserve and have worked for because of where I live.” (Client, Special Rules)

Some reflected that not having a date was less daunting and also posited that it could be both traumatising and re-traumatising to have to relay information about their terminal condition to others:

“I haven’t fortunately been given 12 months. I’ve just been told that I’ll never be cured, and they obviously can’t say how long. I’m still obviously receiving active treatment, I get weekly chemotherapy and radiotherapy, I still get that, and I will get that through my life. But I don’t know how long I’ve got, so I suppose it’s quite distressing when you do get that information. So, to be told that you’re under 12 months, yeah, it must be traumatic. And then having to relay that information onto the DWP must also be quite traumatic as well I would have thought.” (Client, Special Rules)

Overall, however, interviews with clients and feedback from support workers suggest that the terminal illness definition was not well understood by the wider public:

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

Understanding and awareness of the benefits system

Clients generally had a poor awareness and understanding of the SRTI process, and indeed the benefit system as a whole. Many lacked awareness of the difference between Social Security Scotland and DWP and often named the two interchangeably in discussions when referring to just one organisation. Some also referred to the organisation they had interacted with as HMRC or Social Services and in these cases, prompting of specific case details was the only way to ascertain which organisation they had been in touch with. Some who legitimately had been or were still in contact with both Social Security Scotland and DWP also expressed confusion about which organisation was handling different benefits or entitlements that they/their loved ones received. Some had also had contact with DWP to initiate their historic applications and appeared unaware that these had been transferred to Social Security Scotland:

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

Some explained their confusion as being linked to the fact that their contact with the benefits system had been very limited or non-existent before the onset of their ill-health. As one respondent living with terminal cancer explained:

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

One respondent who was non-English speaking explained that they did not know of the existence of Social Security Scotland until advised by a third sector organisation who they were in contact with regarding a separate, unrelated issue to their health. Several support workers also relayed stories of clients contacting them regarding housing benefits or access to Blue Badges, and being unaware that they were also eligible to either ADP or PADP under special rules.

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

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

Eligibility under Special Rules

Making patients aware

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

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

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

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

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

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

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

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

“I did mention it to one of my doctors and he kind of shrugged it off.” (Client, Special Rules)

Overall, nurse specialists (especially those working in hospitals and hospices) or those working in support organisations, were much more likely to be the first person to make a patient aware of their eligibility. These staff stressed that they took great care in explaining people’s eligibility not to emphasise the terminal nature of their condition, and to use language that specifically did not imply a limited life expectancy:

“I say to the person involved, you know, I explain to them what the form is, why I’m going to fill it in and that this is not about being terminally ill necessarily imminently but it’s about the fact they have an incurable condition that’s got no other treatment management. So, we’re just purely treating symptoms, trying to keep them as well as possible for as long as possible.” (Nurse Specialist)

There was also a clear difference across the research between the referral routes noted for those living with conditions that undisputedly met the special rules criteria (e.g. terminal cancer and MND) and those where there was more ambiguity (e.g. Alzheimer’s, Parkinson’s or heart conditions). Indeed, where nurse specialists were in post to support specific conditions or illnesses, these often acted as a direct referral mechanism to support services or benefits advisors. For conditions with a less clear prognosis, and where consultants, GPs or other medical professionals were the main points of contact, the referral routes were less clear and sometimes non-existent. Similarly, charities and organisations who directly employ benefits advice workers were most likely to be able to ensure that eligible patients access the benefits they are entitled to. Many organisations that support individuals living with terminal or life limiting conditions reported during recruitment efforts that they did not have people working in such roles and as such could provide signposting only (with signposting usually being directly to Social Security Scotland or more generic services such as Citizens Advice).

Eligibility and nature of the condition

The CMO’s guidance notes that the terminal illness definition in Scotland “goes beyond cancer to include all diseases and conditions that are judged to be terminal. Examples include: organ failure (respiratory disease, heart and vascular diseases, kidney disease, liver disease); neurological diseases (Parkinson’s disease, Huntington’s Disease, Motor Neurone Disease, Multiple Sclerosis); Stroke; Frailty with one or more co morbid diseases; Dementia; rare diseases; combinations of diseases with conditions.” (p.12) Despite this, it became apparent during the research that many organisations that work with or represent individuals living with many of the above diseases and conditions were either unaware of the new definition and/or felt that their service users would not be eligible to make an application under special rules. This was found in relation to organisations supporting those with Alzheimer’s disease, Huntingdon’s disease, Parkinson’s disease and Multiple Sclerosis, in particular.

Medical professionals confirmed that those living with cancer were more easily identified as being eligible for special rules compared to other conditions:

“I think, for our [cancer] patients, it is quite clear whether they’re palliative or not. I think it probably - it’s more difficult for some of the other illnesses but, you know, a lot of our patients were eligible under the 6 months rule with DS1500 and under the 12 month rule with SR1, so they’re definitely eligible with the BASRiS because there isn’t that time limit on it. And there may be slightly a few more that might be eligible for BASRiS that wouldn’t have been for, say, a DS1500. But on the whole, most of our palliative patients are eligible because they’ve got months rather than years.” (Nurse Specialist)

Again, there were reservations, especially among GPs and nurses, about who would/should be eligible where conditions were non-curative but more progressive or long-term, despite the CMO’s guidance providing advice in this regard:

“Is this an illness that we can reasonably expect someone to die from at some point in their life? I mean, you know, if I’ve got a 6-month-old with a positive Huntingdon’s test, they’re probably going to die of Huntingdon’s in 45 years or so and might be longer...Should they be on it? What sort of time scale were they interested in?” (GP)

“I would imagine with other terminal illness, dementia, you know, oncology things, it’s much harder to prognosis a patient because things are so variable.” (Nurse Specialist)

The same was true in cases where there was a long ante-ceding period before diagnosis and/or fluctuating conditions, where the CMO’s guidance provides a matrix to support clinical judgement but does not provide definitive advice:

“Certainly for our dialysis patients, they can have, you know, periods of quite significant ill health but maybe they’ll rebound back a bit. So, their trajectory is quite…it’s a picture of deterioration but they have bits where they become acutely unwell, and we never know when those are going to be the end of life. So, that’s the difficult thing. I guess I could say all of our patients could actually fit that criteria.” (Nurse Specialist)

Nurse specialists, especially those working with adults with neurodegenerative conditions, were more confident around eligibility in this regard compared to GPs who were interviewed.

In the main, among clients, where people living with cancer had received support from charities such as Macmillan, Marie Curie or Maggie’s, there had been no confusion regarding eligibility and in most cases, individuals had been advised by their nurse specialists that they should/could apply. Consistent with feedback from support workers and clinicians, however, clients who were living with illnesses/conditions other than cancer were more likely to report problems with their applications, including initial failed applications. One participant living with early Parkinson's explained that due to a previous unsuccessful application to the DWP (which could not be verified as actually being made to DWP instead of to Social Security Scotland), they were reluctant to apply again, even under special rules, for fear they might again have an application rejected:

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

The same participant explained that they were reluctant to apply again, even under special rules, for fear that their application may be rejected again:

“I had doctors’ letter and confirmation of everything, saying I was legit with it and they still [rejected it], you know. So, it actual frightens me to try again for it again like, you know. I just - I gave up, you know. I thought, well, they obviously don’t see it as an illness. So, I just kept doing what I’m doing, you know. Struggling on.” (Client, Unsuccessful Normal Rules Application)

Another carer representing someone living with Alzheimer’s explained that they had several failed applications for different benefits and, as a result, felt there was nothing there for people with such conditions:

“I think it should be a faster process with less hoops to jump through than what is currently in place…So, the fact that [client] has got Alzheimer’s which is a terminal illness, regardless of anything else, he should be able to access some disability benefits or some terminal benefits…And there’s nothing there for him.” (Client Representative, Normal Rules, Transferred)

Eligibility and financial security

Another key misconception for some clients had been whether they were eligible based on their financial situation, with many perceiving that if they were financially sound, this would preclude them from receiving either ADP or PADP:

“I’d never been on benefits before and having no experience of the system, I didn’t know or didn’t think…I obviously wasn’t working cos I was off sick, but I was receiving a wage and I just assumed that they would be means-tested. I just didn’t know. It didn’t occur to me, to be honest with you, for that year and a half that I might have been entitled to something, some help.” (Client, Special Rules)

One respondent explained that various people had suggested that they may be entitled to benefits since their diagnosis, but that they never took action to explore this further, because they were in an “okay” financial situation. The client’s spouse highlighted that they’d been told a few times by friends who had been through the cancer journey with their partners that they might be able to access benefits, but only when a couple with very similar experiences confirmed that they had made a successful application for PIP did they start to consider applying.

A different respondent, who had a previously failed application and was not actively pursuing a new one, felt sure that their previous applications for Attendance Allowance, PIP and ADP had all been rejected due to them being above a savings threshold, and therefore being ineligible for any financial support unless or until their financial situation worsened.

Overall, the main issues linked to understanding eligibility among clients were the absence of being signposted early on by professionals (including RMPs), a lack of understanding around which conditions/illnesses may be in scope and misconceptions that assistance under special rules was means tested. Participants encouraged more guidance being proactively offered in all three respects.

Eligibility and risk of sudden death

An issue raised specifically by clinicians was whether conditions where there was a ‘risk of sudden death’ should or could be included under the new definition:

“I think the slight area where the government might need to be careful is that there are lots of conditions where a sudden death is conceivable but not likely. Many of our patients are eminently treatable and most of them will do quite well, but is there still a chance of sudden death? Conceivably, the answer to that could be yes.” (Consultant)

Others also commented that this remained a ‘grey area’.

Understanding and communicating the process

All respondents who took part in the clinician survey were asked to reflect on the BASRiS process as a whole (including the BASRiS form and CMO’s guidance), and to rate the extent to which they felt the process was clear and easy to follow. The table and results below focus on those who gave a rating (i.e. excluding five respondents who said they did not know).

Just under half of the respondents who provided a rating around clarity (49%, n=44) said the overall process was either clear or very clear, while a third (33%, n=29) said it was either unclear or very unclear.

All respondents were also asked how confident they were with (a) talking to patients (or their representatives) about the financial support that they are entitled to under special rules; and (b) signposting terminally ill individuals (or their representatives) to Social Security Scotland.

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

Survey respondents who had completed a medical form or provided information to a colleague to support an application within the last 12 months (n=90) were also asked the extent to which they were confident that they were correctly following the BASRiS process (including the form and CMO’s guidance). This included in cases where contact is needed with both Social Security Scotland and DWP.

At the total sample level, results were again mixed. Slightly less than half (47.5%, n=41) were either very or fairly confident that they were correctly following the BASRiS process, while just over a third (36.5%, n=32) were either only slightly confident or were not confident at all.

Key takeaways

Overall, based on both survey and interview feedback, the terminal illness definition (including removal of the 12-month life expectancy time frame), the BASRiS form and submission process, and eligibility (particularly for certain conditions) do not appear to be well understood by either RMPs or clients. There is, however, better understanding and confidence among specialist nurses and those working in support roles, especially in organisations where patient eligibility for SRTI is more clear cut. This may, of course, be a consequence of those in the latter roles having greater exposure to people who may be eligible, and having more experience or responsibility for benefits advice and supporting applications, but the findings nonetheless point towards there being scope for more awareness raising and confidence building among some groups. The need for clearer messaging regarding the non-means tested nature of benefits assistance under special rules also seems key, as this may be a current barrier to some eligible patients applying. Similarly, raising awareness of the full range of conditions, illnesses and diseases which fall within the scope of the new terminal illness definition may be required across all populations of interest (including, for example, more complex conditions such as neurodegenerative conditions and those which can progress more slowly but are still considered terminal).