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

Chief Medical Officer’s Guidance

Accessing, using and understanding the guidance

Around three quarters of clinician survey respondents perceived that the CMO’s guidance was either clear or very clear, and just over three quarters said that it was either helpful or very helpful in assisting clinical judgments for terminally ill patients. That being said, while some clinicians were confident that they knew of and had the most up-to-date version of the guidance, others were not. There was also evidence that the guidance was not used regularly or as intended by some, with personal professional judgement often used instead. Again, issues around the lack of clarity in relation to the terminal illness definition and patient eligibility as well as when a BASRiS and/or SR1 might be needed, also point towards some areas of the guidance being less clear than others.

The main suggestions for increasing the accessibility and utility of the CMO’s guidance were: making it shorter/more condensed; including a flowchart/visual aid to assist with decisions; and being clearer around when different medical forms should be used (to avoid duplication of effort in some cases):

“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)

Date of clinical judgement

Just under two thirds of survey respondents said they were aware that the BASRiS must explicitly capture the date of clinical judgement of terminal illness. Survey respondents were asked to provide comments on any difficulties and highlighted:

• for certain conditions, e.g. slow degenerative conditions, it was difficult to identify the exact point when patients would be considered ‘terminal’ and move into eligibility for terminal illness benefits;
• where secondary care clinicians make the diagnosis but the BASRiS request goes to primary care clinicians, the date of clinical judgement was not always appropriately or well communicated between the two, and the time taken to communicate diagnoses between sectors could introduce delays:
• there was potential for different interpretations and different dates to be used, e.g. when a patient first accesses specific services/seeks medical help; dates of specific diagnostic tests/ scans; when the patient is told of their diagnosis; the point at which curative treatments have been exhausted, etc.; and
• there were challenges with looking back over multiple areas of clinical records to define a date, and/or cases which required discussion with others involved in a patient’s care/diagnosis.

There was no consistency across the research sample around the dates that were being used as the date of clinical judgement. 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.

Legal obligations

Few practitioners who took part were explicitly aware of their legal obligations under the CMO’s guidance, although most perceived these to be unlikely to differ significantly from their standard professional practice/professional code of conduct. While respondents had little by way of feedback on this point, some comments were made regarding the legal obligation to keep a copy of the BASRiS for the patient record. This included feedback that the instructions/mechanisms for saving an electronic copy could be clearer/easier.

Information sharing and patient consent

Fewer than half of survey respondents said that they were clear in relation to:

• who patient information could be shared with;
• when and in what circumstances information about a patient should be shared with Social Security Scotland;
• how information should be shared with Social Security Scotland (including digital and verbal information); and
• how a patient gives consent for Social Security Scotland to contact clinicians.

In contrast, when prompted in interviews, clinicians reported that they had few/no major concerns regarding data sharing and most interviewees indicated that gaining consent from patients to share information as part of the special rules application process was relatively straightforward and academic.

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.