Disability benefits evaluation: Special Rules for Terminal Illness in the context of the devolved disability benefits

Conclusions and Considerations

What is working well?

• Overall, the findings show evidence to suggest that the SRTI process is broadly being carried out in line with policy principles.
• For those who apply under SRTI – which is the majority of eligible clients - the process appears to be working well.
• The timescales for those using the special rules approach appeared to be fast and there were no reported problems with people being awarded the highest rates available, receiving their payments on time or receiving accurate backdated payments. The principle of no future reviews for those awarded benefits under special rules was also praised by both clients and support workers.
• Most clients felt treated with dignity, fairness and respect. Support workers highlighted that the fast-track process reduces emotional and practical burdens during a difficult time.
• There is generally good understanding of the definition and guidance, and confidence, among specialist nurses and those working in support roles, especially in organisations where patient eligibility for SRTI is felt to be clearer.
• Support organisations view the changes as enabling quicker and easier access to financial support for more clients.
• Some clinicians were familiar and comfortable with the BASRiS, and welcomed the editable PDF format as accessible and easy to use.
• For clinicians, there was a view that the BASRiS form completion did not notably impact on workload.
• Clients reported benefits: reduced money-related stress, ability to pay for care, equipment, and household adaptations, and improved quality of life. Awards can act as a “passport” to wider entitlements like mobility vehicles and council tax reductions.
• While direct contact with Social Security Scotland was fairly minimal among clinicians and clients, where people had had contact, this was mainly described in positive terms. Clients in particular had welcomed the direct and person-centred support made available to them by Social Security Scotland staff when making applications.

What are the challenges?

• Some eligible clients apply under standard rules instead of SRTI, often due to poor awareness or misconceptions about their diagnosis.
• For clients who had pursued standard rules applications and had been either transferred to SRTI or recategorised, there was some negative feedback on the length and complexity of the standard rules application process.
• The main perceived barriers to clients applying for benefits under special rules appear to be misconceptions that these benefits are means tested. There was also evidence that suggested a misunderstanding of the terminal illness definition for some, which was highlighted through some confusion around eligibility based on diagnosis and the point someone is at in their terminal illness journey.
• CMO guidance is perceived by some clinicians as too lengthy, and it does not appear to be well or regularly utilised. Few clinicians who took part in the research were explicitly aware of their legal obligations. There was also evidence of some clinicians not accessing or using the most up-to-date guidance. Calls were made for a shortened “key points” version, and better engagement. Specific areas mentioned for 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, despite guidance already existing for both.
• For both the definition and CMO guidance, there appears to be a gap between clinician confidence in their understanding of the guidance and process, and the actual understanding for some clinicians - even when clinicians report that they understand specific aspects of the guidance or process, the evidence on those aspects of the processes contained within the guidance suggests that there is less clarity.
• There was mixed feedback on BASRiS: some clinicians find it unwieldy and time-consuming compared to legacy forms, and there was some confusion about when BASRiS vs SR1/DS1500 is required.
• Among clinicians there appears to be some impact on feelings of increased autonomy, responsibility and accountability linked to the new SRTI process, which not all clinicians were comfortable with or felt prepared for.
• It was felt that language in letters referencing “special rules” or “terminal illness” can feel blunt and distressing. Suggested improvements include more sensitive, trauma-informed communication.
• There were views that there was still scope to reach even more eligible adults, especially those who do not regularly or proactively engage with community services (including those living with long term, neurodegenerative and/or life limiting conditions).
• The main areas where it was felt communication could be improved were linked to the perceived benefits of having a dedicated SRTI helpline and escalation route which was easily accessible to support workers, as well as the possible extension of the ‘allow list’ to include more support organisations. There was little awareness that SRTI applications are already handled by a dedicated team.

Considerations for policy and practice

1. Consider how to strengthen engagement with, and awareness of, SRTI among clinicians at the population level, with a particular focus on legal obligations, consent, and date of clinical judgement.

2. Consider the CMO guidance and associated documentation to ensure that it strikes the right balance between informative and allowing for the pressures on clinician time. For example consider the use of a shortened ‘key points’ version that links to the most up to date full version.

3. Consider engagement with support organisations/charities that work with more hidden populations and those living with conditions that may not ‘obviously’ appear to fall under special rules.

4. Consider raising public awareness in relation to eligibility, the existence of the fast-track route for applications under special rules, and the various support mechanisms available to assist people with their applications.

5. Consider the language used by Social Security Scotland regarding contact with clients and their representatives: specifically around ‘special rules’ and ‘terminal illness’ terminology used in notifications but also more generally within SRTI communications.

6. Consider public education and awareness raising around the non-means tested nature of disability benefits.

7. Continue efforts to remove stigma attached to receipt of benefits more generally.

8. Continue to consider the measurement and monitoring of long-term policy outcomes, to strengthen evaluation of policy commitments.

These findings have been shared with the Scottish Government to help inform actions to address the issues highlighted.