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

Other emerging themes

Expenses for BASRiS

As highlighted above, the only respondents across all interviews to explicitly mention remuneration for completion of the BASRiS forms were RMPs. This was an area where greater clarification was sought:

“There’s a part in it where it asks about claiming expenses for it and so I’ve never done that…I’ve never claimed expenses for it but I kind of wonder what the practice is around that…Part of me thinks, you know, it depends where that money’s coming from…I wouldn’t profiteer from taking 5 minutes to benefit a family…That’s not clear to me. I mean, maybe it’s written down somewhere but that certainly hasn’t been clear to me, yeah.” (Consultant)

The same respondent reflected that if the remuneration could be given to the organisations working with sick patients, then they would consider requesting it, but if it was for the practitioner’s own personal gain, they would not. If the money came from the NHS budget, they would also be more reluctant to claim than if it came from a centralised administrative pot (i.e. if it was Social Security Scotland that was paying, they perceived that the money should go back into the NHS).

Another respondent who had also never claimed for completing the BASRiS explained that they too would like to be able to claim remuneration, not for their own benefit, but for wider NHS (rather than personal) use:

“The one thing I haven’t done, and I know some GPs, they bill Social Security Scotland for filling out a form, and I haven’t done that thus far but I would like to explore that - not for me personally but we have a departmental fund so trainees can go to courses and things like that. So, I’d quite like, you know, what would be easiest for us as a consultant group is just to have an arrangement with Social Security Scotland so that, as we send them a form, they send a payment to that institutional account rather than doing it on a piecemeal basis.” (Consultant)

One palliative care support worker also noted that GPs in their area were claiming for BASRiS completions, whereas Macmillan nurses were not. The same respondent noted that there was confusion among some clinicians around whether payment for BASRiS completion was coming from NHS budgets, local authority budgets or a centralised source and, again, these were queries that were being wrongfully directed to the support worker (who was also unsure of the remuneration rules). The respondent did question if this may be acting as a barrier to some GPs completing forms and/or being more likely to refer patients to nurse specialist services instead of taking ownership for the BASRiS form themselves.

Improving mechanisms for engagement

On a non-case specific/non-patient level, there were comments from clinicians that contact between Social Security Scotland and medical professionals was perhaps lacking and that this may, in some cases, account for lack of engagement with the new rules and some of the confusion regarding the SRTI process that exists:

“There are routes and the Scottish Government absolutely does know how to contact GPs and it does indeed speak to us on a regular basis. It’s just Social Security, for some reason, just are not connecting…I can’t remember exactly when it [BASRiS] was introduced - about 4 years ago? And they’ve not spoken to us since.” (GP)

“I feel as a GP it has been slipped in without making us aware of it at all. Myself and colleagues are all completely unaware of the changes and it has been a shambles, meaning we cause a lot of potential delay and disruption to patients and families, at a very torrid time for them.” (RMP, Clinician Survey)

There were also suggestions that attempts to raise awareness of BASRiS and SRTI had been futile and that the Scottish Government and Social Security Scotland were not effective in reaching those who needed to know:

“On average, we get about 300 pages of awareness raising stuff a week…I think everyone wants to raise awareness with GPs about literally everything. So, we get these massive data dumps which either we can spend half our time reading or we largely ignore. And, again, there are routes to get to GPs if you want to…Sending us masses, lots of texts, you know, 40 page PDFs that we can’t open up from our IT, doesn’t work. So, again, if you really want to contact GPs and really want to talk to GPs, there are very good routes which are tremendously effective. What doesn’t work is randomly sending things particularly via the Health Board, sending things out vaguely via the Health Board and sort of hoping it happens.” (GP)

This participant argued for more targeted and planned communication with GPs, including regular and ongoing discussion and review of any changes introduced.

This criticism was not restricted to Scottish Government and Social Security Scotland communications, with some suggesting that communications from the CMO could also be improved:

“The way that the CMO sends out emails and missives and letters to professionals is probably the antithesis of good communication. It’s very formal, you have to download the letter, the letter goes through a lot of bumf before you actually get to the essence of what they’re trying to say, and even what they’re trying to say actually is not clear and concise. So, if you want to communicate with GPs, what you need is an email where you don’t have to download the content, which actually says, we wanted to let you know that we’ve changed the definition and this is what it is. The GP can read that within 30 seconds and will remember it. But the way it’s done now through NHS Scot is not very helpful.” (GP)

It was suggested that present mechanisms of information being issued at Board level and being disseminated down were ineffective, and that this may account for some lack of awareness among the general medical population regarding special rules.

Across the research, calls were also made for more training to be offered to nurses and doctors to make them aware of special rules policy and practice at different points in their careers:

“Let’s get in there and explain to them what BASRiS forms are, because the amount of new nurses that come in these doors that have never even heard of these forms, you know. Like, everybody knew what a DS1500 was back in the day…I feel like there has to be some more stronger guidance on who’s to complete them, what kind of time they’ve to complete them in, and get this sent out to all medical staff.” (Support Worker)

“Every health professional, it has to be mandatory training and, if anything changes throughout the years with these forms, their training needs to be updated, just like we all need to do child protection training…I don’t see why we’re not keeping our training up with medical forms which actually could put a family in poverty if they’re not filling out the form at the right time.” (Support Worker)

Raising public awareness

Others reflected on a lack of wider public awareness around terminal conditions, and the fact that people could have both good and bad days as well as be living with a disability that is not visible:

“Everybody’s different but people with Stage 4 cancer are not going to get better, you know. They might get better for a wee while but it’s not better, better. It’s just it’s a better day than it was yesterday…In general, things progressively go downhill, not uphill, you know. So, you know, it might take a long time - like with me, I mean, I’m so blessed that 11 years on, I’m still here. However…things have got worse as I’ve gone along, you know, not better.” (Client, Normal Rules, Recategorised)

“People will look at me getting out the car and you feel you’re being judged. Again, I’m a worrier and they’re looking at you as if to say, “You’re not disabled!” It’s hard to tell a book by its cover. That’s one of the statements I very, very strongly believe in. You can’t tell a book by its cover. Like, I’ve got a terminal condition and a limited life expectancy.” (Client, Special Rules)

More public awareness raising was seen as helpful to prevent people feeling stigmatised for receiving benefits for conditions that were progressive, especially those that were not visible.

Indeed, clinicians also supported patient views that some illnesses/conditions that were not visible could leave people feeling misunderstood, but that the new definition may help to reduce this if awareness became more widespread:

“[Its difficult] to understand what CJD is and how it’s causing them to be disabled when they can look absolutely fine.” (Nurse Specialist)

While many clinicians, especially GPs and other RMPs expressed some cynicism toward the current BASRiS system, there was nonetheless a widespread and shared view that access to financial assistance for those with terminal illnesses was essential. The issue was with the system for achieving this rather than the principle of doing so:

“I think there’s a degree of cynicism in what I’ve said but, fundamentally, it’s really important to ensure quick and effective Social Security finance for people with terminal illness and so improvements in this is something that I would support. I would strongly support.” (GP)

Wider language around the definition and process

There were several issues raised across the research in relation to language and whether some of the language used in the benefits system and for the BASRiS process was confusing and/or misinterpreted.

One issue was around what people perceived as multiple different definitions of ‘terminal illness’ with different definitions used by DWP, Social Security Scotland, NHS, World Health Organisation (WHO) and others working in different palliative contexts, and whether this made the landscape confusing. One respondent who had moved from England to Scotland had no feedback per se on the terminal illness definition, but did note more widely that there appeared to be conflicting definitions used across the system in England, and so it came as no surprise that there was yet another definition to try and understand:

“I didn’t know that you guys [Social Security Scotland] had different definitions for terminal illness. I think everybody else seems to have different definitions, so it doesn’t come as a shock or a surprise.” (Client, Application Route Unknown)

There were also comments around the notion of ‘disability’ with many eligible adults not perceiving themselves to be disabled, as they were still able to ‘do’ many things. The idea of referring to themselves as disabled was something that support workers raised as a common concern among some eligible applicants, especially those who had (before their diagnosis) lived ordinary, healthy, working lives.

Several support workers also concurred that they disliked the language of ‘terminal’ being used in correspondence from Social Security Scotland and in wider literature linked to the application process. Many argued for alternative terms such as ‘non-curative’, ‘non-treatable’ or ‘treatable but incurable’ conditions being used instead (or ‘palliative’ where appropriate). These were terms that were used frequently in day-to-day contact with patients/clients and which were more easily understood, they felt:

“We expect that the condition they’re suffering from is going to, you know, potentially shorten their lives or be their cause of death. But the word terminal illness makes me cringe. It just doesn’t sit right with me at all. I can understand it when we had the DS1500 and the SR1 because you were putting that life limiting time on then. Whereas with a BASRiS, we’re not putting that life limiting time on them and I just feel the word terminal illness is very harsh language to use in the whole process.” (Support Worker)

“[Terminal] gives the impression of impending doom rather than could be, you know, 2, 3 years down the line, 5 years down the line, you know.” (Support Worker)

Some clinicians also noted that the use of ‘terminal illness’ as a descriptor seemed outdated and no longer appropriate in the context of the BASRiS process:

“The language of "terminal" patient is unhelpful and should be updated to reflect post-2000 language around palliative care. The move to BASRiS and being able to provide to those with a serious illness that is likely to lead to death is good but it is constrained by the label "terminal”. This will also pose confusion and problems if any change in the law around assisted dying occurs and is formed against a legal timeframe under the term - terminal. Changing the use of language will improve access and understanding of BASRiS markedly.” (RMP, Clinician Survey)

Changing or clarifying the language would also help to reduce some of the additional work currently required in explaining to people the difference between how they may be classified differently for medical and social security purposes:

“A lot of people will say terminal, a lot of people will say non-curative. I’ll have to have the sensitive conversation, “You are non-curative for benefits purposes” but they’ve not got a clue, so we regularly have to explain the difference between the two.” (Support Worker)

In particular, several support workers noted that they would like to see reference to ‘terminal illness’ removed from award letters:

“They’ve been told they’re non-curative but they don’t see themselves as terminal - We don’t tend to mention BASRiS, we say, “We’ve got a medical report that’s going to fast track you onto benefits, and just to say that the terminology within Social Security Scotland is maybe something I don’t want you to feel upset when you get your letter out because it will say that you’re getting it under terminal illness. However, you know, you have a non-curative condition that’s worsening…and it is leading to need increased daily living and mobility issues. So, we find that we’re having to almost counsel somebody ahead of receiving their decision letter because the decision letter notes Special Rules.”

The labels of ‘normal’ and ‘special’ rules were also seen as not well understood and not clear, and again, some support workers speculated if this was why some adults applied under normal rules when special rules would have applied:

“People are saying, “Well what does that word mean? Special Rules. What does that mean?” I think it’s a duty worker’s job to make sure that they’re jumping through the hoops and explaining things in simple terms. The last thing you want is the family phoning up DWP or Social Security Scotland and being put on hold to find out, you know, they’re terminal or to get a surprise.” (Support Worker)

Comments were also made by some support workers that the options to indicate if someone was aware of their ‘diagnosis’ (or condition) and of their ‘prognosis’ on the BASRiS form may not always be clear and well answered (i.e. some clinicians may tick one or both). In some cases, referrals were made to support services for adults who maybe had chosen not to be informed of their prognosis and so were confused when offered a chance to apply under special rules:

“You might find that a consultant in the hospital or whatever has made a referral to a MacMillan nurse to Welfare Rights to make sure the person’s getting everything. They’ve shared information saying that this person’s at whatever stage but what they haven’t shared is that person has said to the consultant, “I don’t want to know how long I have.” So, you know, it’s the choice of words. It’s the little things like that we’re finding are difficult is the conversations, you know.” (Support Worker)

Politicising of terminal illness

Finally, a very small number of clinicians argued that the BASRiS system was based on a political agenda, and had been ill thought out in terms of its day-to-day operation and implications:

“They were worried about the DS1500 being excessively restrictive. They’re trying to develop systems for Scotland as opposed to Westminster. But I mean, having good intentions just isn’t enough. You’ve actually got to work out, you know, how things are actually going to function properly on a day-to-day basis.” (GP)

A comment was also made that the system was intentionally designed to be difficult for applicants as a cost-saving measure:

"The reality is that Social Security Scotland can only survive by making it hard to collect benefits - it's free money, of course there have to be hoops to jump through…The entire system is set up so that you have to fight to get any money, and if people give up and don't claim - excellent! Social Security Scotland will be a little less overspent next April. Despite those at the top stating that they are keen to get money out to people the whole process is deliberately difficult.” (GP)