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

Methodology

This chapter provides an overview of the approach for the SRTI evaluation. It introduces the logic model and research questions, and gives a summary of the different data sources used to evaluate policy outcomes.

Logic Model

As noted in the published evaluation strategy, evaluations under this programme of work are supported by the development of a logic model. The logic model (see below) shows the trajectory from the direct impacts of the SRTI policy commitments (short-term outcomes) to the outcomes that arise as a result of these and other policies related to the delivery of disability benefits (medium-term outcomes). Finally, the long-term outcomes relate to broader impacts on views on and experiences with Social Security Scotland.

Short-term process outcomes

• Guidance (including signposting) for clients is clear and easily understood
• Application form is clear and easily understood
• Advisors are aware and understand SRTI process, and communicate this to terminally ill individuals (or their representatives)
• Eligible applications come in through the SRTI route
• Applications which do not come in through the SRTI route are identified and actioned quickly
• Payments and processing times are in line with policy commitments for applications through the SRTI route
• SRTI process is clear and easy for clinicians
• Process is correctly followed by clinicians

Short-term outcomes

• Terminally ill individuals (or their representatives) are aware of, and understand, the SRTI process
• Terminally ill individuals (or their representatives) are not worried about applying for disability benefits
• Terminally ill individuals feel they have been treated with dignity, fairness and respect
• Terminally ill individuals are provided with the support they are entitled to, when they need it

Medium-term outcomes

• Barriers to applying for disability benefits are reduced
• Trust in Social Security Scotland is increased
• Reduced money-related stress
• Reduced pressure on household finances

Long-term outcomes

• Human rights are respected and protected
• The take up of benefits is maximised
• Poverty is reduced

The logic model was developed collaboratively with members of the Research Advisory Group (RAG). The RAG was formed in December 2024 to guide and support key decisions in the delivery of the SRTI evaluation, to ensure it achieved its aims and objectives. The RAG consisted of Scottish Government analysts, policy and operational staff, and members of the NIG. The RAG members offered a range of perspectives from subject and methodological experts, helping to increase the transparency and robustness of the research. The group convened four times between December 2024 and May 2025.

Research Questions

In order to meet the aims set out above, the following research questions were defined, based on a logic model.

• Do clinicians understand the SRTI process and guidance?
• What are clinicians’ experiences of the SRTI process and guidance?
• Are clients aware of the SRTI process?
• Do clients understand the SRTI process?
• What are clients’ experiences of applying for disability benefits through SRTI?
• What are clients’ experiences of having their case transferred from DWP to Social Security Scotland through SRTI?
• Why do some clients not go through the faster SRTI route when they are eligible to apply for their disability benefit through this channel?
• What is the experience of eligible clients’ who go through the standard, non SRTI application route?
• What is the experience of those who become terminally ill after they have applied?
• What impact have policy changes had on the experiences and outcomes of clients?
• Is the SRTI process carried out in line with policy principles?

Outcomes

Short-term process

• Guidance (including signposting) for clients is clear and easily understood
• Application form is clear and easily understood
• Advisors are aware of and understand SRTI process, and communicate this to terminally ill individuals (or their representatives)
• Eligible applications come in through the SRTI route
• Applications which do not come in through the SRTI route are identified and actioned quickly
• Payments and processing times are in line with policy commitments for applications through the SRTI route
• SRTI process is clear and easy for clinicians
• Process is correctly followed by clinicians

Short-term

• Terminally ill individuals (or their representatives) are aware of, and understand, the SRTI process
• Terminally ill individuals (or their representatives) are not worried about applying for disability benefits
• Terminally ill individuals feel they have been treated with dignity, fairness and respect
• Terminally ill individuals are provided with the support they are entitled to, when they need it

Medium-term

• Barriers to applying for disability benefits are reduced
• Trust in Social Security Scotland is increased
• Reduced money-related stress
• Reduced pressure on household finances

Long-term

• Human rights are respected and protected
• The take up of benefits is maximised
• Poverty is reduced

Data Sources

The evaluation draws on data from multiple data sources. Collectively, these sources provide a comprehensive understanding of the experiences of clients and clinicians.

There are different and overlapping fieldwork dates for these sources but taken together these experiences largely cover the period December 2024 to May 2025.

Evidence review

Scoping work was undertaken to help decide on the design and objectives of the research. This included a review of minutes of the meetings of the National Implementation Group (NIG) for Terminal Illness to identify where there were existing gaps in evidence regarding clinicians’ knowledge, understanding and implementation of the SRTI policy. Interviews were also undertaken with a small number of NIG member representatives to gather further insight into these factors.

The overarching research questions and questions included in the topic guides to be asked of each of the key participant groups were designed around the logic model and to address the identified evidence gaps.

Commissioned research

KSO Research was commissioned by the Scottish Government to conduct research with clients, clinicians and support organisations regarding SRTI. More detail on the methodologies used can be found in Annex A.

A mixed method approach was used to gather feedback from key populations impacted by the introduction of BASRiS. This included an online survey of registered medical practitioners and nurses, alongside qualitative research.

Clinician survey

The online survey of clinicians contained a mix of open and closed questions, and was open for four months, from January to May 2025. The survey was advertised to registered medical practitioners and registered nurses via a combination of routes. This included the survey link and QR codes being distributed for wider circulation by Health Boards, emails sent to the Royal Colleges of Nursing and GPs and distribution via existing palliative care and other support service networks. Information about the research, including the survey link, was also distributed via the National Implementation Group, as well as via Scottish Government colleagues with links to GPs and nurses.

While 99 survey responses were received in total, several data cleaning issues were identified which resulted in the final number of responses being included in the analysis being reduced. As such, the final number of responses included in the analysis was 94.

Of the 94 respondents, 59 (63%) were Registered Medical Practitioners (RMPs) and 33 (35%) were Registered Nurses (RNs). Of the remaining two respondents, one described themselves as a ‘Manager’ and the other did not identify their role.

Respondents were also asked to identify which sector they worked in:

• 53 (56%) worked in the Primary/GP surgery sector (e.g. GP, Practice Nurse, Advanced Nurse Practitioner);
• 35 (37%) worked in the Secondary/Hospital sector (e.g. Clinical Nurse Specialist, Advanced Nurse Practitioner, Doctor, Consultant, Palliative Care Team member); and
• 5 (5%) worked in the Tertiary/Community sector (e.g. Clinical Specialist, Advanced Nurse Practitioner).

Qualitative research

The qualitative research consisted of semi-structured interviews with a sample of 15 clinicians, 13 applicants and their carers/representatives and 20 support workers who had experience of supporting people to make applications.

Clinician interviews

Clinicians were also invited as part of their survey response to opt in to a follow-up telephone or online interview to give more detailed feedback. All those who ‘opted in’ were followed-up and invited to take part.

A total of 15 clinicians and nurses took part in interviews, including:

• three Consultants (including paediatric consultants)
• four GPs (including one semi-retired practitioner and one locum)
• one Specialty Doctor
• two Palliative Care Nurses
• five Nurse Specialists

Across the sample, practitioners specifically mentioned that they worked with cancer patients; terminally ill babies and children; those with renal failure; respiratory failure; cardiological problems; haematology conditions; Alzheimer’s disease; Parkinsons disease; Motor Neurone Disease (MND); Muscular Dystrophy; Multiple System Atrophy (MSA), and Creutzfeldt-Jakob disease. There was a mix between those working in GP surgeries, hospitals and hospices, specialist wards or centres and in the community.

Clients/Applicants

Those who were eligible and had applied for or were in receipt of disability assistance under SRTI were invited to take part in the research mainly via support organisations. These support organisations worked collaboratively with the research team to act as gatekeepers in sharing information about the research with their service users/members. Information sheets and research invitations were made available for wider dissemination with eligible adults/families via existing support service networks, social media outlets and word of mouth from staff. All eligible adults registered with the Scottish Government’s Social Security Client Panels were also invited to take part.

A total of 13 interviews were completed with clients - nine with adults who were themselves living with a terminal illness or non-curative condition, and four interviews with carers/supporters.

All but two had applied for or were in receipt of ADP, and the final participant was in receipt of PADP. The research was unable to engage any families receiving CDP on behalf of a terminally ill child or young person. However, the views and experiences of this group were captured vicariously from interviews with support workers and clinicians, including those working specifically with terminally ill children.

Those who took part were asked to describe (only so far as they were comfortable) the nature of the illness(es) or condition(s) that they were living with, both at the time of the interview and at the time that they had applied for assistance under special rules. It should be noted that, in some cases this had changed, with different/changing diagnoses being reported for some over time, often reflecting an increase in complexity of their condition or worsening of health. Among the clients who took part or were represented by a carer/friend:

• six were living with terminal cancer
• two were living with Alzheimer’s, one of whom was also diagnosed with Parkinson’s Disease and the others whose diagnosis was compounded by wider physical health problems
• one was living with early symptoms of Parkinson’s Disease
• one was living with a life-long complex physical disability and also had learning difficulties
• three were living with complex congenital disorders/malformations.

Three participants used English as a second language, two of whom took part with the use of an interpreter and the third opted to take part without communication assistance.

As became apparent during the research, many individuals living with a terminal illness are also largely hidden in the community (sometimes due to reduced mobility). They are unlikely to be immediately and readily visible unless they proactively seek regular or ongoing help or post-diagnostic support for their conditions. Some also may not consider themselves as being eligible for disability assistance under special rules due to lack of awareness or understanding of the Scottish terminal illness definition. The reliance mainly on support services as gatekeepers to reach eligible adults, therefore, while adopted for ethical reasons, may have presented a barrier to participation.

Even for those who do engage with services, the nature of the research and the fact that eligibility to take part was based on them living with a terminal condition also presented unique challenges, i.e. sensitivities around asking people to give up their time for research when they are very unwell and when time is a very precious resource. For this reason, and because support organisations will have significantly more experience of the SRTI policy process compared to any one individual client, a decision was made to recruit support organisation staff for interviews to try and vicariously capture the experiences of their clients (as well as their own experiences as supporters in helping applicants to know which forms to submit, and in helping them through the application forms and wider process).

Support organisations

A total of 17 interviews were carried out with staff from support organisations (three of which were attended by multiple staff, resulting in feedback from 20 support staff in total). All were recruited directly via emails sent to support organisations across the country or were reached through existing networks. Organisations were sampled on the basis that they provided (or may provide) either specific services to those living with terminal conditions or complex disabilities, or provided wider support to families/carers, including financial advice and support. As the research progressed, some snowballing also occurred whereby support workers were contacted by colleagues who had already taken part and invited to contribute. Interviewees represented a mix of different support organisations who worked with either adults or children living with a broad mix of illnesses/conditions. Broad geographical coverage in the sample was also achieved.

Client Survey

The report also draws on quantitative data from the Social Security Scotland Client Satisfaction Survey 2024-25 report. The Client Satisfaction Survey is administered to all those who have applied for benefits from Social Security Scotland or who have had their benefits transferred from the DWP.

The Client Satisfaction Survey data presented in this report has a reference period of April 2024 and March 2025 and is based on responses from clients who responded to the survey between 17 July 2024 and 31 March 2025. The results in this report are based on 1467 responses of ADP SRTI clients. There were also 57 eligible CDP SRTI clients in the data and, where possible, these results have also been presented.

Please also note the following technical points about how the quantitative Client Satisfaction Survey findings are presented throughout this report:

• The number of respondents providing a valid answer to each individual question/statement varied slightly. The results do not include respondents who skipped the question/statement.
• Equalities and demographic data is self-reported by respondents.
• Most results to the closed questions are rounded to whole numbers. As such, results may not sum to 100% due to rounding.
• Those receiving PADP were not included in the data as PADP was included in the Client Satisfaction Survey when it launched nationally in April 2025, which is outside the 2024-25 collection period. SADLA clients are not included in this data either as case transfer to SADLA began in March 2025. Both are included in the 2025-26 data collection.
• The survey results provide rich insight into some of the experiences of clients who applied for ADP or CDP. However, we cannot assume that the results represent the views of these clients as a whole. It is reasonable though, given the number of responses, to treat the findings as indicative of their general views.

Official statistics

Social Security Scotland collects information on applications, payments, and clients in the process of delivering the benefits. Some of this information is published online as Official Statistics. The following Official Statistics publications are used as sources of evidence in this report:

• Adult Disability Payment statistics to 31 July 2025^[2]
• Pension Age Disability statistics to 30 April 2025^[3]

Considerations and Limitations

This evaluation provides rich insight into the experiences of clients who have been through the SRTI process, as well as clinicians and support organisations. A key strength comes from the integration of data from a variety of sources; individually they provide different perspectives on the outcomes of interest and collectively they allow common themes to be identified. However, there are some considerations to acknowledge.

We cannot assume that the findings represent the views and experiences of all SRTI clients. Due to the sensitive nature of this research and client group, recruitment was carried out through support organisations instead of through the Social Security Scotland client database. The majority of clients were those who had sought help with their application. It also became apparent during the fieldwork that many clients did not know themselves what application route they applied through (e.g. through standard rules or SRTI), and interviewers were only able to discern this information from specific answers that participants gave to the interview questions.

While the overall sample of clients who contributed was relatively small in number, it should be recognised that those living with terminal illnesses make up a relatively small proportion of those accessing disability benefits overall (~2%). This is especially true for children (0.2% of children and young people in receipt of CDP were receiving an award under SRTI as of June 2025)^[4] and those over pension age (who may receive PADP). At the time of the research, PADP was also only just being rolled out across the country, having previously been piloted in a small number of local authority areas, and SADLA case transfer began in March 2025. This meant that the available population from this cohort who could potentially have volunteered to take part was limited.

As well as this, both the commissioned qualitative research and the Client Satisfaction Survey rely on clients opting into the research. This may bias the sample towards those more willing or able to take part in research. To some extent, we have tried to mitigate this through the qualitative research with support organisations who can perhaps provide reflections on a wider range of clients’ experiences.

The language used by some of the clients who took part in the research also indicated confusion between different agencies. Several participants confused Social Security Scotland and DWP and often named the two interchangeably in discussions when referring to just one organisation. Where the client’s wider disclosures made it possible to identify which agency had handled their application, but where the client mistakenly referred to the wrong agency, this has been flagged and corrected in the reporting.

The sample of clinicians who took part in the survey, while reasonably strong, represents only a small proportion of the eligible population of clinicians who could have contributed. The same is true for the clinical interview sample. Time is likely to be a factor in this, as the individuals being invited to take part represent a profession where free time is sparce and there are often multiple competing demands for their professional input.

It also became apparent as the work progressed that there was some confusion among specific populations of interest regarding eligibility to take part in the work. This was especially true for support organisations and medical professionals working with adults with long term, neurodegenerative and/or life limiting conditions where there were misconceptions around whether SRTI may apply. This meant that some support organisations who were approached to take part in the work, and who were asked to share the research invitation with their service users or members, failed to engage because they wrongly perceived that they were out of scope. Many charities were also UK wide and, when contacted, showed little or no awareness of the Scottish legislation on SRTI.

Long-term impacts will take time and additional data to determine. Understanding the true impact of SRTI policy would involve measuring their lasting contribution to wider Scottish Government outcomes.