Terminal illness - definition for the purpose of Disability Assistance - guidance: consultation analysis

Title of the Guidance

The draft Guidance was titled 'Guidance for Doctors Completing Benefits Assessment under Special Rules in Scotland (BASRiS) Form for Terminal Illness.' The Executive Summary of the document also makes clear that the Guidance is for all Registered Medical Practitioners and licensed to practice, who certify that their patient is terminally ill and is eligible for benefits under special rules by completing the Benefits Assistance under Special Rules in Scotland (BASRiS) form (replacement of DS1500 for benefits devolved to Scotland). The penultimate question in the consultation sought views on whether respondents were generally content with the title of the Guidance.

The majority of respondents (65%) expressed that they were content with the title of the Guidance.

Importantly, while a quarter of respondents said 'no' to this question, the qualitative comments given in support were unrelated to the question in a number of cases. Specifically, five respondents (a mix of individuals and organisations) used this question to express dissatisfaction about the exclusion of clinical nurse specialists being able to complete the BASRiS form, which they perceived would make the process more timing consuming for GPs and less cost effective (as above).

Where comments were made by those who were not content and which did relate specifically to the title of the Guidance, these included that it was "clunky" and perhaps "a bit long".

One individual and two organisations suggested that the title should ideally avoid using the word 'terminal illness' except where it is essential to fit with the law as it is enacted. This was because they perceived that many people who may be eligible would not identify themselves this way:

"Many people with multimorbidity or frailty do not view themselves as 'terminally ill' and it could be a barrier to implementation similar to the 6-month life expectancy if not explained well." [The Royal College of Physicians of Edinburgh]

One national support organisation also explained that additional problems may exist with a lack of understanding of the word 'terminal' in the wider population:

"In addition to situations where the person may not be informed of their prognosis because of risk of harm, there are people with progressive and incurable conditions who would consider the use of terminal to suggest that they are reaching the end of their life imminently. They may not consider this to be the case, while still clearly meeting the criteria for an application under special rules. If people who do not consider that their condition is terminal [are] aware that the Guidance is titled terminal illness, it may cause harm. There is a specific issue around the way in which the word terminal is used and applied." [Parkinson's UK Scotland]

The same organisation noted that including this term in the title may also result in some medical professionals not considering all relevant patients as eligible:

"…uncertainty involved in assessing someone on a protracted trajectory of frailty makes doctors more reluctant to identify that someone may be reaching the end of their life. It is possible that the insertion of the word terminal in the Guidance title may mean that doctors do not consider that people with Parkinson's and other non-malignant diseases would be eligible, even though the Guidance makes clear that people with advanced illness would meet the criteria. [Parkinson's UK Scotland]

A suggested alternative was to replace 'terminal illness' with 'progressive illness'. Another organisation noted that the title did not have any reference to terminal illness and questioned if this was intentional. They also suggested that the term 'special rules' may serve up some unwelcome connotations.

One Registered Medical Practitioner noted that they felt the title should be less formal and more patient-friendly:

"Needs to sound more human and patient centered rather than a piece of legislation. The title should be friendly and something patient can remember without strain." [Registered Medical Practitioner]

The same individual also suggested that the word 'benefits' should be removed as it may be perceived as "humiliating and degrading".

Only three suggestions for alternative titles were put forward, these being:

• Guidance for doctors completing benefits assessment under special rules in Scotland (BASRiS) form for people with a terminal illness;
• Scottish Special Rules Benefits Assessment (SsSBA); or
• Financial Assistance - Special Tier (F.A.S.T)

One respondent suggested that the title should also make explicit reference to the fact that, where appropriate, BASRiS replaces DS1500 in Scotland.