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

Discussion

Overview of main findings

The research suggests that, while many areas of the SRTI process are working well, and most of the policy principles are being adhered to, there is considerable variation in relation to both understanding of SRTI and its implementation both within and between clinicians, clients and support workers.

Clinicians

It seems clear from the research that not all clinicians understand the SRTI process and guidance, and there is a clear discrepancy between RMPs and RNs. GPs perhaps had the least awareness and understanding of the process overall, and many were still conflating legacy DWP systems with new Social Security Scotland systems (either intentionally or by mistake).

There was also evidence of different levels of awareness and understanding of the SRTI process and guidance between those working in different specialisms. For example, those working with cancer patients, MND patients, MSA patients and terminally ill children and young people, appeared to have greater awareness and understanding than those working in cardiology, with neurodegenerative health or general medicine (based solely on the sample included in this research).

Even where clinicians are aware of and are implementing the process as intended, experiences of it again appear mixed. While some clearly welcomed the removal of the 12-month life expectancy rule and perceived that the new process was faster and more flexible, others have found the greater autonomy, responsibility and accountability that the broader definition entails to be uncomfortable and unwelcome. Very few of the issues reported by clinicians appear to be practical in nature (except perhaps issues linked to the lack of accessibility for telephone contact with Social Security Scotland and difficulties in integrating local IT systems with the online Social Security Scotland forms). Indeed, almost all resistance and confusion in relation to the SRTI process appears to be related to the definition and decisions around when a BASRiS would or would not apply.

The CMO’s guidance is not well utilised, it seems, and there is also variable awareness of what it covers and entails. More guidance in relation to BASRiS eligibility is definitely needed (including guidance in a shorter more accessible format), to reassure medical practitioners around clinical judgements where prognosis is beyond 12 months, and there also appears to be a need to reinforce messages around legal obligations under BASRiS (although there was nothing to explicitly suggest that practice is not currently compliant in this respect). Many clinicians are not aware of the legal need for prompt completion of a BASRiS form or of there being any specific timescales/deadlines for completion per se, and there is a presumption that timescales are determined by individual need rather than being fixed - although most did indicate that they completed forms promptly for ethical reasons (e.g. speed being of the essence for people with terminal conditions).

The current indiscriminate use of the CMO’s guidance may be linked to issues around it not being sufficiently well shared within medical populations (i.e. ‘trickled down’ from Board level), and potential for information contained within the CMO’s guidance (and any updates) to be lost in amongst other practitioner priorities. However, it was also perceived as being too long, with a sense that this may lead to practitioners either feeling uneasy and unsupported in their interpretation of terminal illness and/or choosing not to refer to the guidance and instead rely on their own judgements around eligibility (irrespective of whether they were actually accurate in this or not).

Clients

Among clients too, there appears to be variable but overall limited awareness of the SRTI process. This was evident at even the most fundamental level with several clients being unable to confidently identify if they had applied for benefits assistance under normal or special rules, several confusing Social Security Scotland with the DWP (or others), and several being unclear on the absence of the need for future reviews for SRTI awards. Some of this lack of awareness may be linked to the fact that most people’s successful special rules applications had been largely directed, led or facilitated for them by support workers or benefits advisors. The confusion was also compounded in many cases by people trying to navigate the system at a time when they/their family members were unwell and were focussed on other issues in addition to financial concerns.

That being said, most who had been successful in their awards under SRTI commented that the process had been reasonably fast, with no issues related to receipt of the highest amount, to receiving backdated payments or weekly in advance payments. In the main, the value of payments was also perceived to be adequate to support people’s needs (although this view was not universal). The principle of no future reviews was welcomed and was seen by support workers and clients as a significant benefit compared to DWP approaches.

There was very little evidence in this sample of people having their cases transferred from DWP to Social Security Scotland through SRTI and there was some confusion about which organisation had handled individuals’ cases, with conflation of DWP and Social Security Scotland (as well as conflation of Social Security Scotland with social work services). People were not always aware of the processes that had occurred ‘behind the scenes’ of their applications, and were simply grateful for the support at a time when they were coming to terms with significant and life changing news regarding their health. Peace of mind was a key feature of respondents’ accounts where the process had been handled for them.

The research suggests that, while not in the majority, some people are still applying through the ‘normal’ route compared to the faster SRTI route. This was largely thought (by support workers) to be due to them either:

• being unaware of the SRTI route;
• attempting to apply themselves and not knowing which route to follow (especially where they do not consider themselves to be ‘terminal’ or where this discussion has never been had with them); and/or
• some applications preceding a terminal diagnosis and then being followed by a rapid deterioration (i.e. made in the period immediately before someone’s condition deteriorates and before they may become eligible under special rules).

Despite this, there appear to be no obvious issues related to clients who go through the ‘normal’ or non-SRTI application route or who become terminally ill after they have applied being recategorised under SRTI. There was, however, evidence that some people who apply under normal rules do so because they are unaware of the fast-track process and this may mean that some are waiting for longer to access financial support than they need to. Possible gaps for recategorisation were identified for those living with progressive conditions and for those already receiving lower levels of disability payments before the SRTI rules were introduced (noting, however, that some people living without a terminal illness may already be in receipt of the higher rate payment because of the nature of their condition). In both cases, these individuals may be unaware that they would now qualify for recategorisation and an SRTI award. However, there was no direct evidence of this captured within the research.

Overall, for clients, while there is evidently scope to raise awareness and understanding of the SRTI policy and process, there are also some clear and tangible positive impacts for those who are successful in their applications. These include reduced pressure on household finances and money related stress; improved independence, control and quality of life; access to wider support and entitlements; greater awareness of the benefits system; and, for some, increased trust in Social Security Scotland.

Support organisations

Support workers (including specialist benefits advisors and charity workers) are those who appear to best understand the SRTI processes and the nuances around BASRiS. As a result, where clients are assisted in their application by support workers, the experience is likely to be considerably smoother than if they approach the process alone. The main area of concern for support workers is around how to make even more medical practitioners and tertiary or third sector organisations aware of the wide reach of SRTI, beyond those living with terminal cancer and those at the very end of their life. This may ensure that more applications are made by those living with a wider range of conditions that are judged to be terminal, where additional financial support could significantly enhance the quality of their lives. These populations (including those living with Dementia and Parkinson’s, etc.) already quite often experience little by way of post-diagnostic support and so would appear to be particularly vulnerable with regards to being missed by the benefits system. Exploring if these observations are corroborated by independent data collected by Social Security Scotland on the nature of conditions reported by successful (and unsuccessful) applicants would be useful. If this is borne out, making the CMO’s guidance clearer with regards to conditions that are eligible but where applications for support are currently less evident would seem prudent.

Contacts between Social Security Scotland and support workers also appear to be largely unproblematic. Complications for support workers occur mainly if someone has already started or submitted a ‘normal rules’ application and/or if they are unsure of where their application is in the system and whether a new one should/should not be commenced. Clients are not always sufficiently well placed to confirm where they are in their application journey and this can make the process confusing and longer than necessary after being picked up by support workers (with additional work involved in tracking existing applications in the system). Non ‘allow list’ organisations can also experience some challenges in accessing a completed BASRiS on their client’s behalf and submitting this supporting information in formats other than in writing/by post.

Although general feedback in relation to Social Security Scotland was broadly positive, support staff did stress more than other respondents that there were, increasingly, challenges attached to making contact with Social Security Scotland in relation to both new and existing applications. There were perceptions that Social Security Scotland were becoming busier as they took on responsibility for more devolved benefits and that this was impacting on all services, including those offered to terminally ill clients. The lack of awareness of the dedicated ‘special rules’ team within Social Security Scotland and an easy or expedited means of contacting them was also seen as a weaknesses in the current system. Similarly, there were calls for a more obvious or easily accessible escalation route. These concerns, alongside some of the language used in Social Security Scotland communications to clients were the main things that undermined perceptions of dignity, fairness, and respect.

The feedback from support workers suggests that SRTI is clearly allowing more adults and children who need financial support due to their illness to access that support. However, these observations would need to verified by statistical data before they could be taken as reliable.

Implications for policy and practice

A number of key findings emerged from the work which would have implications for onward development or implementation of SRTI.

The most obvious divergence from the intended policy principles appears to be the finding that some working in the medical profession are not fully aware, understanding and accepting of the Scottish terminal illness definition and the move away from a 12-month life expectancy. This is a fundamental part of the BASRiS process and unless/until clinician judgements are all reliably and consistently informed by the Scottish terminal illness definition and associated CMO’s guidance, the policy is unlikely to reach its full potential. This points towards a need to engage in more effective awareness raising with medical professionals (including GPs in particular) in relation to the terminal illness definition, but also perhaps the need for more engagement to better understand practitioners’ concerns and the specific challenges that they perceive the existing definition to present.

The research also suggests that the reluctant acceptance of BASRiS for some clinicians may mean that they are not proactively submitting appropriate paperwork to Social Security Scotland and/or not signposting all eligible people on a routine basis. Rather, many are simply reactive to requests from others (i.e. patients, colleagues or support services). This points towards a need for a more formalised approach to when in a person’s journey the signposting occurs, to ensure that all who are eligible are made aware of their entitlement as soon as possible and in an equitable way. Raising awareness of clinicians’ legal obligations as per the CMO’s guidance also seems key, as evidence suggests this is currently quite limited.

The research suggests that there is also some misinterpretation and different practices with regards to the date of clinical judgement that is being used on BASRiS forms. This includes, for example, RMPs using either the date that a patient accesses specific services or seeks medical help; the date of a specific diagnostic test or scan; the date that a patient is advised of their diagnosis; the point at which curative treatments have been exhausted/stop working; and/or when non-curative treatment is pursued, etc. This is compounded by challenges with some patient records being lengthy and it being difficult to extrapolate the most appropriate date in some cases (especially where multiple care professionals have been involved). This is perhaps one area where the physical BASRiS form itself could be reviewed, as well as or instead of the guidance, to make sure that the most appropriate date is used, and to ensure, as a minimum, that people are not simply using the date that the BASRiS is completed.

Another very specific area of the CMO’s guidance which may need to be made more explicit is around the clinical judgement date that should be used for those living with long-term degenerative conditions. Although the guidance currently acknowledges that accurately predicting when someone may die is imprecise and that giving a prognosis is challenging, with advice and case studies offered to support decision making, this was one area where clinicians expressed that the existing room for subjectivity/reliance on discretion may lead to inconsistent practice. Raising awareness among clinicians of the full range of conditions, illnesses and diseases which fall within the scope of the new terminal illness definition may also be required (including, for example, more complex conditions such as neurodegenerative conditions and those which can progress more slowly but are still considered terminal).

On a related note, where individuals are living with long-term conditions, and where it is known that the individual will undisputedly deteriorate over time, further guidance may be required. Specifically, this would include guidance on how and when the person should be contacted and by whom, and/or how they should initiate contact with appropriate professionals to ensure that they apply for assistance at the point that they may meet the special rules criteria and feel ready to apply. At present, it seems there is scope for some people (especially those in the community with no routine post-diagnostic support) to be missed.

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. Again, this suggests that more awareness raising is needed among relevant populations.

In relation to communications, for clients there appears to be a need to raise understanding of eligibility. Specifically, clearer messaging regarding the non-means tested nature of disability assistance under special rules seems key, as well as raising awareness of the full range of eligible conditions, illnesses and diseases which fall within the scope of the new terminal illness definition and associated information on the nature of progression/deterioration which would make someone eligible. This will also likely help reduce the number of terminally ill patients applying via normal rules (either through choice, a lack of awareness of the SRTI route or other reason), which can take longer to process. On this, there is also perhaps a need for professionals to more proactively urge people to use the dedicated fast-track route so their application is prioritised.

The research also suggests that not everyone is currently aware of the range of supports that are available to them to assist with applications, either from Social Security Scotland or more widely in the community. Again, identifying appropriate points in people’s journeys to make them aware of this support seems key, as those who are supported with their applications reported more positive experiences overall.

The research also suggests that there is a united desire from clinicians, clients and support workers to see the language and terminology used by Social Security Scotland be softened and made more sensitive. Specifically, there is a need to reconsider or remove any unnecessary use of or reference to ‘terminal illness’ in communications designed for clients. While this language was seen as too stark, in contrast, reference to ‘special rules’ was seen as too vague. This points towards the need to systematically review all points of communication to ensure that the language being used is user friendly and trauma informed.

Also in relation to communications, there is evidence that the specialist team that is dedicated to work with special rules cases in Scotland is not well known about and is not always easy to access. Having a dedicated ‘special rules’ telephone number/helpline or other expedited means of reaching this team could usefully be explored.

While the research suggests that most other process elements are working as intended, it does also highlight that there is not good awareness of all policy principles, especially the fast-track route with a simpler application form, the process for appeals/redeterminations, and indefinite awards/absence of reviews. There may be scope, it seems, for communications from Social Security Scotland to be clearer and more effective in all of these regards.

While it is not yet possible to evidence long term impacts, what this research has also been able to do, is to highlight some of the barriers that may need to be overcome to ensure that these longer-term outcomes materialise. These include:

• better and more effective engagement with, and awareness raising of, SRTI among clinicians at the population level;
• dedicated 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 (e.g. neurological diseases, neurodegenerative diseases, COPD, and rare diseases/conditions);
• more public awareness raising in relation to eligibility and the existence of the fast-track route for application under special rules and the various support mechanisms available to assist people with their applications;
• more public education and awareness raising around the non-means tested nature of disability benefits; and
• efforts to remove stigma attached to receipt of benefits more generally.

Although not related to any of the policy principles directly, it is worth noting some of the concerns that were raised in relation to potential issues that may emerge as SRTI beds in and becomes more established in the long term. One of the main reservations in relation to the removal of future reviews, for example, was what would happen in cases where someone awarded ADP, CDP or PADP made significant unexpected improvements in their health, or a new treatment became available to change their prognosis. As it stands, there seems to be a lack of clarity especially for clinicians around who would have responsibility for reporting a positive change in circumstances. Explicit guidance from Social Security Scotland to make it clear that it is the patient themselves who holds this responsibility may be helpful.

By working to remove some of the barriers, the take up of disability benefits is likely to be maximised and any poverty reduced.

Gaps in the research

While the research was successful in gathering a large volume of feedback from a broad range of stakeholders, there are nonetheless acknowledged gaps in the work. Principally, the research did not engage with any families living with terminally ill children or young people, and the views of paediatric specialists and support workers were also in the minority. More focussed work to explore the unique issues faced by families applying for CDP under special rules may be needed. This would help Social Security Scotland to better understand if RMPs are aware of the CMO’s guidance in relation to children and young people who may live for a long time with a non-curative condition, as well as to explore referral practices for eligible children and young people where they remain in the community and are not referred for specialist in-patient care (noting that the families of those accessing specialist paediatric institutions may be more likely to be routinely identified and signposted for financial support).

Similarly, the work did not adequately capture the views and experiences of those applying for PADP. This was primarily because PADP had only been piloted in a small number of areas, beginning roll out at the time the research fieldwork was carried out (with PADP launched nationally on 22 April 2025). With the number of PADP applications under special rules likely to increase imminently, following its roll out across the country, further targeted work in this regard would also be beneficial.

It is also apparent that more work may be needed to engage with practitioners and support services who engage with adults living with less common conditions, including neurodegenerative conditions, that enable people to function for a reasonable period before they approach the end of their life. Ensuring appropriate and timely referrals or reviews for these populations, as they progress through the various stages of their illness, would help to ensure that SRTI maximises its reach.

Conclusions and next steps

The research highlights that there is significant scope for greater awareness of SRTI among all populations of interest, and potential for improvements to the process to ensure more consistent practices and that the policy intentions are fully met. The feedback generated here should be used, alongside other evidence and monitoring data captured by Social Security Scotland and their delivery partners, to ensure that eligible individuals who are not currently benefitting from the process are reached.