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

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.