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

Introduction

Background and policy context

Where a child or adult living in Scotland has been diagnosed with a terminal illness under the Scottish definition, they may be eligible to receive disability benefits under Special Rules for Terminal Illness (SRTI).

Special rules apply to Child Disability Payment (CDP), Adult Disability Payment (ADP) and Pension Age Disability Payment (PADP), the details of which are published on the Social Security Scotland ‘Information on benefits’ web pages.^[2] Applications made this way require to be accompanied by a Benefits Assessment under Special Rules in Scotland (BASRiS) form for the patient, completed by a registered medical practitioner or registered nurse.

The Scottish definition of terminal illness is different to that used by the UK Government. As per the Social Security (Scotland) Act 2018, The Scottish definition of terminal illness, for the purposes of accessing disability benefits, is “a progressive disease that can reasonably be expected to cause the individual’s death”. This definition removes the timescale currently used by the Department for Work and Pensions (DWP) (i.e. that the patient is likely to die within 12 months). Instead, the judgement as to whether a person should be considered terminally ill for the purposes of determining eligibility for disability benefits is made by clinicians (a doctor or nurse involved in an individual’s diagnosis or care), based on guidance prepared by the Chief Medical Officer (CMO)^[3].

As part of a wider programme of work evaluating the policy impact of the devolution of disability benefits, the Scottish Government commissioned independent research to gather feedback on how changes to Special Rules for Terminal Illness (SRTI) in the context of the devolved disability benefits have been experienced to date and to explore their relevant impacts. The research also sought to assess whether these experiences and impacts were in line with the SRTI policy principles and its anticipated outcomes.

The specific aims of the research were:

• to understand how the Scottish terminal illness definition and associated guidance have been understood and experienced by clinicians;
• to understand how SRTI clients experience the process of applying for disability benefits;
• to understand how SRTI clients experience the process of having their benefit transferred from the DWP to Social Security Scotland; and
• to understand the impact of the SRTI policy changes (change in definition, application process, highest rate of disability assistance i.e. both care and mobility enhanced, where relevant) on clients’ experiences and outcomes.

This report presents the findings from that work.

Methodology

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 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. Work was carried out over a period of six months and all participation was on a voluntary, opt-in basis.

The research was underpinned by a logic model developed by Scottish Government analysts working with key stakeholders and was built around the policy principles of SRTI and their anticipated short-, medium-, and long-term outcomes (attached as Appendix A). These outcomes were aligned to wider governmental objectives and Social Security Scotland Principles.

Scoping work was also 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.

Clinician survey

The online survey of clinicians was designed and hosted using Smart Survey and 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 NIG, as well as via Scottish Government colleagues with links to GPs and nurses. The survey remained open for four months and contained a mix of open and closed questions. 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.

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. One respondent had submitted two responses, which were merged into one collated response, three respondents had never worked with patients with terminal illness and so were routed out of the survey, and one blank response was identified where the respondent had not answered any of the substantive questions. 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).

Appendix B provides a breakdown of the number of survey responses received by clinician role and sector.

Clinicians were also asked to indicate the main local authority area that they currently worked in (i.e. the area where they spent the majority of their professional working time). Appendix C shows the breakdown of responses by local authority area.

Clinicians were also asked how frequently they had direct contact with patients who may be diagnosed as being terminally ill according to the Scottish definition. Most noted that they worked with such patients either daily (40%, n=38) or weekly (43%, n=40). The remainder all reported less frequent contact.

Interviews

Clinicians

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; and
• 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. Among the carers/supporters, three were partners living with someone with a terminal illness/long term condition (one of whom also took part in a two-to-one interview) and one who was speaking on behalf of their friend who they had helped with their application (and whom they were supporting in their daily end-of-life challenges^[4]). Although participants were not always clear on the application routes they had taken, based on the information shared in interviews, it was possible to deduce that the sample included:

• seven adults with successful special rules applications (including one with a previous normal rules application which had been unsuccessful and one who had applied via normal rules, and then submitted a special rules application before hearing back from the original application);
• one adult with a pending special rules application;
• three adults who had applied via normal rules but had either been transferred to special rules when moving over from Personal Independence Payment (PIP) to ADP, or had been recategorised by Social Security Scotland as special rules clients;
• one adult who had a previously unsuccessful normal rules application and who would (based on the information given in interview) now be eligible under special rules but was reluctant to apply; and
• one adult who was unclear on the route taken and for whom it was not possible based on their feedback to deduce what award had been made and under what rules.

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.

The terms ‘client’, ‘patient’, ‘applicant’ and ‘recipient’ are used interchangeably in the report (often related to which stakeholder perspective was being given). Further, not all who took part had been successful in their applications for ADP under special rules - three had made unsuccessful applications, one of whom was in the process of re-applying, one who was not and one who had made a successful second application. This again dictated how they and others described themselves.

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; and
• 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.

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.

For all groups of interviewees, information sheets were developed detailing the background/purpose of the research, what it entailed and how the research findings would be used. Data privacy notices were also developed. All interviewees were invited to take part either online, by telephone or in person depending on their preferences, and clients were invited to have a carer/supporter with them during interviews if they wished. All respondents were guaranteed anonymity as part of the reporting process and all but two interviews were digitally voice recorded for later transcription and analysis purposes. Where interviews were not recorded, written notes were taken during the interviews to support the analysis.

Research caveats

As with all qualitative work, where the numbers of participants are relatively small and where participation is on a self-selection basis, there will be inherent bias in the findings presented below.

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. This was also evident in interviews with clinicians, several of whom required to cancel or reschedule interviews at short notice due to medical emergencies at work, or patient needs necessarily taking priority over the research. A handful of clinicians also declined to take part on the basis that they would not be paid for their time.

It also became apparent that many support services often also only operate on a part time basis (including offices being closed for part of the week and a reliance on automated email and telephone responses). This limited the time that staff were available to take part in the research, since meeting service user needs understandably took priority.

It also became apparent as the work progressed that there was some confusion among specific populations of interest regarding their own or others 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 that support unwell adults were also UK wide and, when contacted, showed little or no awareness of the Scottish legislation. These are interesting observations in themselves and are also reflected in the substantive research findings presented below.

The language used by some of the clients who took part in the research also indicated confusion between different agencies and who had handled their applications. 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 in fact handled their application, but where the client mistakenly referred to the wrong agency, this has been flagged and corrected in the reporting.

While the overall sample of clients and patients who contributed was also relatively small in number, it must be recognised that those living with terminal illnesses make up a relatively small proportion of those accessing disability benefits overall. This is especially true for children (who may receive CDP)^[5] 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. This meant that the available population from this cohort who could potentially have volunteered to take part was limited.

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 benefits assistance under special rules due to not being aware of or understanding the terminal illness definition. The reliance mainly on support services as gatekeepers to reach eligible adults, therefore, 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 or end of life 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).

Finally, while attempts were made in the recruitment process to sample a wide range of different views from professionals and those living with terminal illnesses in different geographical areas, with different demographics and different life circumstances, the findings are nonetheless not fully representative. This should be borne in mind when interpreting the findings below, and caution should be taken not to generalise the findings too far. This does not, however, diminish the considerable value and importance of the feedback that was shared.