Information

Terminal illness - definition for the purpose of Disability Assistance - guidance: consultation analysis

Our analysis of responses to the consultation on guidance of the Chief Medical Officer for Scotland, on the definition of terminal illness for the purpose of disability assistance, undertaken between 12 February and 19 April 2019.


Discussion

The consultation attracted a strong response from a large number of individuals and a wide mix of organisations from across different sectors. Responses were detailed and there was much discussion for each of the questions asked, with many organisations in particular providing comprehensive justifications for their views.

Overview of Responses

The table below shows the proportion of respondents who answered 'yes', 'no', were unsure or did not provide a response to each of the consultation questions.

Question Yes No Unsure N/R
Q1. Is the Guidance clear about the process for accessing benefit assistance under special rules in Scotland (BASRiS) 66% 28% - 6%
Q2. Do you feel that the Guidance clearly outlines the process as it relates to children and young people? 63% 15% - 22%
Q3. Do you find the Guidance easy to navigate and understand? 56% 39% - 5%
Q4. Does the Guidance make clear how clinical judgements should be made? 65% 24% 2% 9%
Q5. Do you think that information presented in the annexes are likely to support the clinical judgement process? 70% 24% - 6%
Q6. Do you think the Guidance is likely to lead to reduced variability in implementation? 31% 56% 7% 6%
Q7. Can you think of any support that may need to be in place for professionals, the public and others to help the implementation? 85% 9% - 6%
Q8. Are you generally content with the title of the Guidance? 65% 26% - 9%

Levels of agreement were similar for almost all questions with two exceptions. A large majority of respondents expressed that they did not agree that the Guidance in its current form would likely lead to reduced variability in implementation. Conversely, a large proportion agreed that there were additional supports that could be put in place to help professionals, the public and others to help implementation. There was also some slight disagreement regarding how easy the Guidance was to navigate and understand.

Cross Cutting Themes

A number of cross-cutting themes emerged across the consultation, including:

  • concern and a perceived lack of rationale the removal of responsibilities for specialist nurses to complete the new form, and a perceived need to broaden the scope for who can complete the BASRiS form;
  • some confusion regarding overlaps between reserved and devolved benefits and the how BASRiS and the DS1500 would work in parallel (and if this would be sufficiently well understood);
  • more clearly defining what is meant by 'terminal' and giving this a stronger presence in the Guidance was also suggested, as well as making eligibility criteria easier to understand, with cross-referencing to the form itself;
  • limited time/availability of medical professionals to be able to familiarise themselves with the new Guidance and new process, or to undertake training to ensure that the new process rolls out smoothly;
  • potential costs associated with the new process, especially in terms of GP's time and claims for fees;
  • while there is some helpful information in the Guidance, there are some perceived issues with the structure and language used that make it more challenging to navigate than it needs to be; and
  • ongoing monitoring and evaluation of the new process in practice, and continued engagement with stakeholders during roll-out would be welcomed.

Addressing these key concerns seems to be key as an initial first step to ensure buy-in and understanding of the relevant audiences.

Next Steps

The report will be used by policy staff, the CMO and the Short-Life Working Group on Terminal Illness for Disability Assistance, to finalise the Guidance and inform the policymaking process.

Conclusion

Although not a key focus of the consultation, one of the main themes to emerge was a strong level of dissatisfaction with the decision not to allow specialist nurse practitioners to complete the application for BASRiS. While not explicit feedback on the Guidance per se, this issue seems to be fundamental to the how well the Guidance (and proposed new practice) is likely to be received by the medical profession. This seems to be the biggest immediate challenge to be addressed.

There may be a need to consider ways in which the Guidance can be shortened to make it even more accessible to a wider audience, and a range of secondary support materials/resources may also be required to aid implementation.

Subject to some changes to the Guidance, including simplification and reduction of text, refinement of annexes and case studies and making the Guidance available in easy to navigate formats, organisations and individuals alike seem to welcome that a document has been developed to aid implementation of the new BASRiS process.

Contact

Email: meg.sydney@gov.scot

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