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.

Annex B - Finalisation of the CMO Guidance following the Managed Consultation

This annex was added in June 2021, prior to publishing.

The overall response was very positive and respondents were largely very supportive of the new guidelines. Below are the key areas identified for improvement in the finalisation of the Guidance and consequent developments.

The Role of Clinical Nurse Specialists

You Said

Respondents used a number of different questions in the consultation to express that they disagreed with completion of BASRiS forms being limited to registered medical practitioners. They gave the following reasons; the process will be less efficient; this could compound the workload pressures which doctors are already experiencing; nurses have the requisite skills required to make a clinical judgement in line with the CMO Guidance.

We Did

Provision was included in the Social Security Administration and Tribunal Membership (Scotland) Act 2020 to amend the Social Security (Scotland) Act 2018 to allow registered nurses to make a clinical judgment of terminal illness.

The CMO Guidance, along with all tools to support clinicians, has been updated throughout to reflect this legislative change.

In making this change, five criteria which the registered medical practitioner or registered nurse must meet in order to complete a BASRiS form were agreed, by the Chief Medical Officer's Directorate (CMO) and the Chief Nursing Officer's Directorate (CNO), in consultation with stakeholders. These are that they:

1. must have appropriate skills, knowledge and experience to undertake the role and;

2. must be involved with the diagnosis and / or care of the patient and;

3. must be acting in their professional capacity and;

4. must work in accordance with a clinical governance framework and the

requirements of your employers and/or contractual arrangements and;

5. must hold current registration with the General Medical Council or the Nursing and Midwifery Council.

These criteria, which have been provided for through a combination of legislation and guidance, will ensure that only those with the appropriate skills and experience will be able to undertake this role.

Electronic completion of the BASRiS form is in development, which will make the completion and administration of the form easier for the clinicians.

Improvements to the usability of the Guidance

You Said

Clarity was suggested in a number of areas for example the overlap between the Social Security Scotland BASRiS and Department for Work and Pensions DS1500 systems.

Further development of the executive summary was also suggested to enable the Guidance to be more easily navigated.

Refinement of some of the worked examples included in the Guidance was also recommended.

It was suggested that an on-line version of the Guidance would make it much more user friendly.

We Did

The Short Life working Group and the Stakeholder Reference Group further refined the guidance throughout to improve clarity and ensure consistency.

The executive summary was re-written to ensure it provides a clear overview of the purpose of the Guidance and the content of each section.

Some of the worked examples have been further developed.

When published online, the document will have hyperlinks taking the reader to the section being referenced allowing much easier navigation.

Support to help Implementation of the CMO Guidance

You Said

Responses were clear that supporting materials would be needed to help ensure the smooth implementation of the Guidance. Respondents offered the following suggestions; training and awareness raising on the new rules, easy read documents to support understanding, a professional helpline, short video guides.

We Did

It is vitally important registered medical practitioners and registered nurses have the knowledge and understanding of both the new definition and the CMO Guidance which supports it. To ensure this the following support measures have been developed with the help of the Terminal Illness National Implementation Group:

A frequently asked questions document has been developed to support clinicians using the Guidance. This includes a comprehensive list of questions to support clinicians particularly who may be navigating the new process for the first time.

An easy read leaflet has been developed for patients which provides clear information explaining the BASRiS process and how it will support access to Scotland's new forms of disability assistance.

A comprehensive easy read fact sheet has been developed for clinicians providing a clear overview of the new process.

Social Security Scotland will provide a helpline whereby a clinician completing a BASRiS form can seek assistance regarding how they can access the Guidance, what the process of decision making is and how the Guidance can best be navigated by that clinician.

A hub of information is being established on Social Security Scotland's website where the Guidance will be published alongside a number of supporting materials. This will provide a single location for clinicians to easily access all resources.

Social Security Scotland are developing a video, due to be available before Child Disability Payment launches, highlighting the new process, timelines and support available.

Stakeholder Roadshows are being planned which clinicians will be encouraged to attend

Presentations have been made to Health Board Communication Leads and materials provided for onwards communication.

Communications, including a CMO/CNO letter, will be sent to clinicians and copied to others with an interest, including Chief Officers of Integrated Joint Boards


You Said

Concern was raised about the potential for inconsistent implementation of the Guidance.

We Did

While decisions based on clinical judgements will consider the individual's particular circumstances, and therefore will be "patient-centred" the guidance is intended to ensure that such judgements are underpinned by a consistent deliberative approach.

We agree on the importance of the efficacy of the guidance and for that reason will undertake a robust audit to review its implementation and inform any future amendments. A framework to analyse the implementation of the Guidance has been developed, which will form part of the comprehensive package of audit activity which will be undertaken once disability assistance is being delivered.



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