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

Chief Medical Officer’s guidance

The Chief Medical Officer's (CMO’s) guidance for clinicians completing a BASRiS form is for clinicians who have a patient with a terminal illness. It explains how to complete a Benefits Assessment under Special Rules in Scotland (BASRiS) form for the patient and it is a legal requirement to take the guidance into account when:

• reaching a clinical judgement of terminal illness; and
• completing the BASRiS form.

Accessing, using and understanding the guidance

All respondents to the clinicians’ survey were asked if they knew where to access the most up to date version of the CMO’s guidance (before taking part in the survey). Over a third (39%, n=37) said that they did, while around half (49%, n=46) said they did not. The remaining respondents (12%, n=11) were unsure.

Survey respondents were also asked if they had personally referred to the CMO’s guidance since it was updated in December 2023. Responses were relatively evenly split between those who had (45%, n=42) and those who had not (47%, n=44). The remaining eight respondents (8%) were unsure.

Those that had referred to the updated CMO’s guidance (n=42) were asked:

• the extent to which they felt the guidance for completing a BASRiS form was clear and easy to understand; and
• how helpful the CMO’s guidance was in assisting clinical judgements for terminally ill patients.

Around three quarters of the survey respondents (76%, n=32) felt that the CMO’s guidance was either clear or very clear, while 14% (n=6) felt it was unclear (four of whom were RMPs). Similarly, just over three quarters of survey respondents (77.5%, n=31) said the CMO’s guidance was either helpful or very helpful in assisting clinical judgments for terminally ill patients, compared to just two respondents (5%) who said it was unhelpful.

Feedback on the CMO’s guidance in interviews was unanimously unobjectionable with staff either saying that they had read it and had no feedback on its utility, perceiving it as straightforward or commenting that they felt no need to read the latest update as they were already familiar with what they needed to do:

“I haven’t read it recently, but I think it was clear at the time when I read it.” (Nurse Specialist)

“I think it’s pretty self-explanatory, right, if there’s a confirmed diagnosis, you know that the patient’s illness is terminal, there’s no preventative measures. We should be supporting the patients to access that.” (Nurse Specialist)

Comments were made that people had printed copies on their desks “for reference” or kept copies on computers “if needed”, which could potentially result in them not accessing the latest guidance. Others said that although they did not have a copy to hand (and could not remember being sent/having seen a copy), they would simply search for the guidance online if and when needed:

“I just search up on the website. So, you know, I assume the website’s kept up to date. Hopefully that will remain up to date.” (Consultant)

“I do often just go back and read it again and think, “Am I right in this? Is this what I’m meant to be doing?” I think it’s good to have it there and I have got it saved on my computer and…before I fill in a form, I always do a quick scan.” (Nurse Specialist)

The CMO’s guidance was last updated in December 2023, and while some RMPs and RNs were confident that they had the most up-to-date guidance, others were not:

“I think I’ve probably been sent it in an email…and I do have it on my computer. And I suppose if I was wanting to see if there was updates, I would probably go on the Scottish Government website and have a look.” (Nurse Specialist)

There was also some evidence from GPs in particular that the guidance was not being used as intended:

“The CMO tried putting out guidance about it but it’s still very vague. I think, honestly, people are still basically using the same guidance they did for the DS1500.” (GP)

Some spoke of the need for a more succinct version of the guidance to be made available to prevent them needing to read the whole document any time they wanted to check their practice, which is what they did at present:

“It’s about 40 pages too long! But what you don’t want to do is to make an application on the family’s behalf and then get it knocked back. So, I would always check and ensure I’ve got the wording right.” (Consultant)

One participant gave an example of how an AI query was as effective as any other form of communication in providing what practitioners needed to know:

“If you think of all the information which a GP needs to be able to do their job, to be able to retain that in your mind, you’d need to be better than ChatGPT really. So, if I needed to know the definition of something…I’d just put it into my ChatGPT and it’ll come up with the definition…So, if you asked me, do you know the definition of terminal illness, how the Scottish Government define terminal illness and the period for which you should be doing the form for terminal care - I probably wouldn’t know the answer but I know how to find it now.” (GP)

Many survey and interview respondents also provided comments or suggestions in relation to what could be done to make the guidance clearer, easier to understand and/or more helpful. The main suggestions were:

• making it shorter or more condensed;
• including a flowchart or simple visual aid to assist with decisions; and
• being clearer on when the different forms should be used (to avoid duplication of effort where only one form was required for a patient):

“There needs to be much more clarity on when to use each form. Most health care professionals have no knowledge of all the different benefits, and it was much easier just doing one DS1500 for all the terminally ill rather than different forms for different ages in different parts of Scotland for different types of benefits.” (RMP, Clinician Survey)

“Guidance on when SR1 or BASRiS is applicable. We often need to duplicate when we're told we've completed the wrong form which then results in delay for the patient receiving their payments. This then puts patients at a disadvantage as they are still paying out for travel, help at home, equipment etc. but their benefits have been delayed.” (RN, Clinician Survey)

A range of other suggestions were made by just one respondent each. These included suggestions to: develop a summary at the start of the guidance; provide good practice examples or clear minimal requirements regarding the nature and level of information required; develop an easy to understand system and an algorithm to aid the process; and provide training on making decisions and a forum to discuss patients who may be considered ‘borderline’ for eligibility.

One respondent acknowledged that it would be difficult to make the guidance clearer as “one size does not fit all”. In addition, one respondent highlighted that, while the guidance was helpful, the process required a change of mindset from clinicians in relation to the removal of the life expectancy time period from the definition:

“I think the guidance is very helpful but it’s a change of mindset for myself to get used to not having the time factor to consider.” (RN, Clinician Survey)

Date of clinical judgement

Respondents to the clinicians’ survey were asked if they knew (before taking part in the survey) that the BASRiS must explicitly capture the date of clinical judgement of terminal illness. Just under two thirds (63%, n=59) said they did know this, while around a quarter (24%, n=23) did not. The remaining respondents (13%, n=12) were unsure.

Survey respondents who had either directly completed the medical forms or provided information to colleagues to support applications were asked if they had ever experienced difficulties in knowing which date to use on the BASRiS to reflect the date of clinical judgement of terminal illness. Around half (53%, n=48) said they had not, while a third (33%, n=30) said they had. The remaining respondents (13%, n=12) were unsure.

Those survey respondents who had experienced difficulties (n=30) were asked to provide comments about this, with 19 doing so. Most highlighted the difficulty of pinpointing an exact date in certain circumstances as outlined below:

• For certain conditions, e.g. degenerative conditions which worsen over time or where patients can retain a relatively high quality of life for some time, it is difficult to identify the exact time when they would be considered ‘terminal’ and move into eligibility for terminal illness benefits:

“The patient can receive a medical diagnosis but remain stable for a period of time. The disease progression can be insidious, and it can be difficult to pinpoint the exact time of disease worsening.” (RN, Clinical Survey)

“The term "terminal illness" is very problematic from my point of view - though the definition used is more helpful. I…would tend to apply it when there is evidence of recurrence after initial curative treatment, or evidence of spread of cancer, but this does not correlate fully to being unable to work/having additional needs, and some people may live a relatively normal life with metastatic cancer for a long time before their health really does start to decline because of the condition.” (RMP, Clinician Survey)

• Where secondary care clinicians make the diagnosis but request for BASRiS goes to primary care clinicians - it was noted that the date of clinical judgement is not always communicated by the secondary care clinicians, that hospital letters do not always contain this information or make it clear, and that the time taken to communicate diagnosis between sectors can introduce delays:

“The diagnosis is usually made by secondary care, and they don't necessarily communicate the date of clinical judgement with us.” (RMP, Clinician Survey)

• The potential for different interpretations and different dates to be used, e.g. when a patient accesses specific services or seeks medical help; the dates of specific diagnostic tests or scans; when the patient is told of their diagnosis; the point at which curative treatments have been exhausted/stop working and/or when non-curative treatment is pursued, etc.; and
• Challenges with looking back over multiple areas of clinical records to define a date, and/or cases which may require discussion with others involved in their care/diagnosis.

In interviews, there was also no clear pattern to the dates that were reportedly being used by practitioners as the date of clinical judgement, with some reporting that this would vary on a case-by-case basis and depending on what evidence was available to them:

“It would be either from the correspondence I’ve got from the hospital about where somebody is in their illness or my own judgement from my own consultations with them.” (GP)

As well as there being differences within individual practice, there was a clear discrepancy in the dates being used between practitioners. Some would use historic dates from patient files based on when they first became unwell, were admitted to hospital or received scan/test results. Meanwhile, others used the date of their own assessment of the individual or the date that they completed the BASRiS form:

“I generally put the day that I’m filling the form in cos that’s probably the day that I’ve discussed with people and we’ve made that decision. Have I used another date? I don’t think so. I think there was one person who queried the date with me because they’d been quite unwell for several months…I think it was the benefits lady that phoned me up and said, “Oh you’ve put such and such a date on this form but the lady was actually really unwell”, but she was in hospital for some of that time, so I said, “Well - that’s the day I’ve made my clinical decision.” (Nurse Specialist)

Some issues also existed with how soon after scans, etc. a full diagnosis could actually be made and this too influenced decisions around which date could or should be used:

“Sometimes the date of diagnosis is like the date of the CT scan, but we haven’t actually got the full the investigation and things to say that they’re actually terminal. The date would differ slightly.” (Nurse Specialist)

Some nurses commented that they used the date that a consultant had made a formal diagnosis, or when the diagnosis was first communicated to the patient, as they perceived this was the most reliable date. Some did, however, question if they should be backdating the clinical judgment date to when an illness or condition was first ‘suspected’:

I’ve taken that from when [the consultant] let me know either through a letter that this is what they’ve definitely got or we’ve picked it up in clinic and I’ll put that clinic date from when we’ve said to the person, “Look, we keep reviewing things, we’ve been sitting on the fence a bit but we’re now at the point where we think this can’t be anything else…So, I tend to use those dates but then…sometimes you think, well, is that right or should I be backdating it to when we first just suspected because it now is [confirmed].” (Nurse Specialist)

One support worker explained that a simple solution to this dilemma would be to ask for different dates on the BASRiS form, e.g. the date of diagnosis, date of clinical judgement and date of completing the form, to make practitioners stop, think and consider what would be most appropriate in each case.

Comments were also made that it was particularly challenging to provide accurate dates for terminally ill children for CDP applications, especially those born with life limiting conditions:

“There are children who are born with a condition but that diagnosis may not be made for a number of months, but they have been living with that condition from birth, and so it’s really difficult at times to know, are we putting the date of diagnosis and the date of diagnosis itself might be quite vague. Is that the day that the diagnosis is broken to the family? Is it the day that the genetic result becomes available? Is it the day that the genetics was broached? My practice would be that I would normally go for the earliest date, so that’s normally what I would do…but I would say that there needs to be more clarity around about that. That would be really helpful.” (Consultant)

Challenges also existed where an SR1 was needed instead of or as well as a BASRiS and where the two dates might need to differ:

“I think once we know that they’re palliative or they’re not having treatment, then that would be the date…I think it’s the SR1 that has the date of diagnosis and then the date they become terminally ill. And, you know, sometimes the date of diagnosis is way back and then they progress years down the line, so there seems like a big gap, you know, and I think they query it sometimes cos they can only backdate so far…But they obviously weren’t eligible then.” (Nurse Specialist)

Legal obligations

Few practitioners who took part in interviews were explicitly aware of their legal obligations under the CMO’s guidance, although most perceived that these were unlikely to differ significantly from what their standard professional practice or professional code of conduct would require of them (but were not sure):

“The question is, am I behaving professionally, which is a much higher standard.” (GP)

“I would know that I would operate within the Code, you know, that all doctors would in terms of their professionalism and probity, etc. But other than that, I’m not clear on what other legal obligation would be.” (Consultant)

Some also perceived that their legal obligations were restricted mainly to making accurate and honest decisions about the nature of someone’s condition and whether it met the CMO’s guidelines:

“I think it’s quite clear, you know. You’re making decisions on someone’s health, and I do follow the guidelines. I was asked to fill out a BASRiS form for someone else by the benefits lady who I’d referred for like the lower level of disability payment and she phoned me and said, can you do a BASRiS for this lady? And I said, no I can’t because, actually, she’s actually doing very well, she doesn’t need home care and she’s not as the guidelines say and I sort of quoted.” (Nurse Specialist)

This legal obligation dictated which date of clinical judgment was used in some cases:

“Let’s imagine someone who’s diagnosed by a neurology colleague with Motor Neurone Disease a year ago or 18 months ago, and I see them 6 months ago. Now, of course, my state of knowledge changes 6 months ago even though their original diagnosis was a year prior to mine. So, I tend to use my state of knowledge…I can’t sign off on knowledge that wasn’t known at the time to me, if that makes sense. because I’m just aware of my own legal obligation - I’ve been quite clear to put in the date when I met them and when I formed that view.” (Consultant)

While respondents had little by way of feedback on this point, some comments were made regarding the legal obligation to keep copy of the BASRiS for the patient record. This included feedback that the instructions/mechanisms for saving an electronic copy could be clearer/easier:

“I fill one out [the BASRiS], with consent from the patient, I’ll send a copy to our local GP surgery, so they have a copy [but] saving it is hard…When you get to the very end of the form, it lets you print it out and it does let you save it but it took me - I think I can save it OK now but the instructions weren’t very clear on how to do that and I remember the first couple of times, I had difficulty saving the form.” (Nurse Specialist)

“I attach it to our system which is the database system which doesn’t always play very nicely…You think you’ve attached it and discover it hasn’t.” (Nurse Specialist)

One respondent explained that they were not sure how to save an electronic copy and therefore did not keep copies for the patient record at the local level, which they understood would be beneficial to have:

“I’m aware that you can save that form because people always ask me for it and I say, sorry I didn’t do that…You just click and it just submits it…I mean, it would be helpful for us then to reflect back on what we’d written…So, it would be really helpful to keep that as part of their patient record, for sure.” (Consultant)

Both RMPs and RNs working in hospital settings reported that patients rarely asked for a copy of their BASRiS form - this was usually only for those requesting the original BASRiS from their GP.

There was also very little feedback with regards to the need to complete forms promptly, and most simply commented that they were unaware of there being any specific timelines or deadlines for BASRiS completion:

“I’m not totally clear on what the deadlines are for it…I’m asked to complete these forms and I’m aware that, you know, they will backpay for a certain time period…But I, myself, am not clear on the timeline surrounding that. I’m kind of being led by my colleagues [who request the BASRiS] to kind of guide me on that.” (Consultant)

Others stressed that their legal obligations went beyond those in the CMO’s guidance and that patient care was the key driver of their behaviour in all cases:

“I mean, my legal obligation, I don’t necessarily know if I have a legal obligation to complete the forms, but I have a professional obligation to signpost the patients to someone who can.” (Nurse Specialist)

Respondents to the clinician survey were also asked to rate their level of agreement in relation to how clear and actionable the legal obligations were.

Across all four legal obligations, the issue with the highest level of agreement in terms of being clear and actionable was “the need to apply the Scottish definition of terminal illness when making a clinical assessment” (where 74% (n=66) agreed compared to 18% (n=16) who disagreed). The issue with the lowest level of agreement (although still recording higher levels of agreement compared to disagreement) was “how a patient gives consent for Social Security Scotland to contact clinicians” (where 48% (n=40) agreed compared to 33% (n=28) that disagreed).

Information sharing and patient consent

All respondents to the clinician survey were asked to what extent the SRTI processes were clear with regards to a series of issues specifically related to information sharing and consent.

Across each of the four issues, responses were split between those who felt the processes were clear or very clear and those who felt they were unclear or very unclear, as follows:

• Who patient information can be shared with: 40% (n=33) said this was clear while 38% (n=31) said it was unclear.
• When and in what circumstances information about a patient should be shared with Social Security Scotland : 43% (n=36) said this was clear while 35% (n=29) said it was unclear.
• How information should be shared with Social Security Scotland (including digital and verbal information): 40% (n=33) said this was clear while 37% (n=31) said it was unclear.
• How a patient gives consent for Social Security Scotland to contact clinicians: 34% (n=28) said this was clear while 39% (n=32) said it was unclear.

In contrast, when prompted in interviews, clinicians reported that they had few/no major concerns regarding data sharing. This difference may be accounted for by the different profiles and experiences of the overall interviewee sample compared to the survey sample but also may be due to the questions asked - while the survey asked about specific data sharing issues, interviewees were asked about data sharing in more general terms and respondents were free to highlight issues (if any) of greatest note to them. Most interviewees indicated that gaining consent from patients to share information as part of the BASRiS process was relatively straightforward and academic:

“I’ll say to them that I’m going to fill out this form for them and I ask for their consent to do that and to share it with different people. I tell them that when I fill out the form, it will get sent to Social Security Scotland and to the benefits person and to the GP practice and I’ll make sure that their information is confidential.” (Nurse Specialist)

Several clinicians who were interviewed (both RMPs and RNs) stressed the importance of seeking consent as a means of providing context for award letters that patients may receive:

“Mostly, it’s fairly rare that I need to do one without their consent. I always try and get their consent and have that conversation, so that it puts it into context and it doesn’t come unexpectedly to them or they read something that they think, “Oh I didn’t realise…and does that mean [I will] just drop dead?” (Nurse Specialist)

Several GPs in particular raised concerns around not wanting to complete BASRiS forms without the consent of the patient and without knowing that they had additional support in place to help them process any decision made by Social Security Scotland:

“You’re terrified that the patient’s going to get a letter from Social Security saying, we understand you’re now palliative, here is some money, which would obviously be horrific thing to happen to anybody…So, we always want to just check with the patient that they know what’s going on and they understand, you know, this is not, you know, it’s not a death sentence.” (GP)

In only very rare cases were BASRiS or SR1 forms completed without someone’s consent. In some cases, consent was sometimes taken as being implied rather than given directly, but this was only expressed in a minority of cases:

“If the patient has specifically said, don’t share my information with Social Security Scotland, one would not do that. The assumption is that if someone is asking for a fit note or a palliative care note, that they agree to share the information and I suppose it’s not signed for [i.e. written consent] but the assumption is that they’re agreeing, I suppose. Are there any issues about sharing it? I think best interest would say, you will share it, you won’t necessarily get permission…I think once someone is thought to be palliative and needs that form, the best interest is to get on and do it.” (GP)

Overall, practitioners were confident that information shared between health, social security and local authority systems would always be secure and felt that information sharing protocols were clearly established and well tested:

“So, because I use an NHS email and if I’m sending it to Social Security Scotland, I know that that’s secure as is the GP and the benefits people work for the council, so they’re all - any time I’ve ever shared a form, it’s secure. I wouldn’t send it out to somebody’s G-mail, you know.” (Nurse Specialist)

Support workers also commented that there were few or no challenges around gaining consent and information sharing. The overwhelming view was that patients were very pleased to allow others to reduce their personal burden and often gave permission for them to do “whatever was necessary” to help ease their journey:

“They’re aware [the patient] that I’ve been in touch with the medical team and usually they’re quite happy for me to just go and do that liaison because, as I say, at that point in time, their head’s just full of trying to deal with what they’ve just been told.” (Support Worker)

Key takeaways

Overall, there were mixed views in relation to how accessible the CMO’s guidance was, as well as some clinicians simply not knowing that updated guidance was available. Further, the guidance does not appear to be well utilised (or used regularly) and this is linked mainly to perceptions that it is too lengthy and/or not necessary to help guide decisions (with some practitioners preferring to rely on their own professional expertise and experience to guide decisions instead of referring to what was seen as sometimes confusing or ambiguous advice given in the guidance). Few practitioners who took part in interviews were explicitly aware of their legal obligations under the CMO’s guidance and there was mixed feedback in relation to when and how patient information could be shared (and with whom) including how a patient gives consent for Social Security Scotland to contact clinicians. Some very specific areas of the guidance were flagged which may increase its utility, including guidance around when it would/would not be appropriate to use either a BASRiS, SR1 or both, and which date should be used on the BASRiS forms for the date of clinical judgement. At present, there appears to be very inconsistent practice in both regards. Calls were made for a more succinct form of guidance and it seems there may be scope for better/more regular and effective engagement of RMPs in relation to any updated or revised guidance.