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

Introduction

Background

The Scottish Government included provision in the Social Security (Scotland) Act 2018 to introduce a new definition of terminal illness that differs from the current UK Government definition. Therefore, when making Disability Assistance Regulations under the Act, the definition is:

"An individual is to be regarded as having a terminal illness for the purpose of determining entitlement to disability assistance if, having had regard to the Chief Medical Officer's (CMO) Guidance, it is the clinical judgement of a Registered Medical Practitioner that the individual has a progressive disease that can reasonably be expected to cause the individual's death."

This differs from the current UK DWP Social Security legislation where a person is deemed terminally ill if they suffer from "a progressive disease and their death as a consequence of that disease can be reasonably expected within 6 months".

If diagnosed as terminally ill under the new Scottish definition, an individual becomes eligible for special rules, and their application for Disability Assistance will be processed differently by Social Security Scotland. This means that:

• there is no qualifying period. An individual is not required to have the condition for any length of time before they are eligible under special rules;
• once verification has been given that the person is considered to have a terminal illness, for the purpose of entitlement to Disability Assistance, there is no requirement for an individual to undergo any further assessment to establish that a person has a terminal illness;
• awards will be calculated, at the latest, from the date of application by the patient; and
• individuals who qualify under special rules will be automatically entitled to the highest rate of the component part(s) (care and mobility) of whichever benefit they are entitled to.

This may also enable the person's carer to access Carer's Allowance quicker, as this is a 'passported' benefit, dependent on the person receiving one of the disability benefits.

The Guidance

To support clinicians' critical decision making, the CMO, in consultation with Registered Medical Practitioners, set the framework in guidance. A Short-Life Working Group on Terminal Illness for Disability Assistance was established, responsible for developing the CMO's Guidance for registered medical professionals to make clinical judgements about 'terminal illness'. They were supported by a Stakeholder Reference Group (SHRG), who provided the perspective of users and their carers during the development of the Guidance.

The Guidance - which was the focus of the consultation discussed in this report - is concerned with establishing whether a person has terminal illness for the purposes of determining eligibility for disability assistance on the basis of special rules. Its starting point is to determine whether it is the clinical judgement of a Registered Medical Practitioner involved that the person has a progressive condition, which can reasonably be expected to cause the person's death. In addition, it considers whether the individual requires expedited access to Disability Assistance arising from that condition.

Produced in January 2019, the Guidance is around 50 pages in length. It contains a section on eligibility for Benefits Assessment under Special Rules in Scotland (BASRiS), including an example flowchart for assessing eligibility. It also covers broader operational points such as communications, responsibilities, data management, etc., as well as various copies of resources to aid implementation as an Annex (e.g. an example application form).

The Consultation

The purpose of the managed (non-public) consultation was to gather views of relevant professionals on the content, structure, and implementation of the Guidance. Letters were issued to relevant stakeholders by the CMO in February 2019 inviting contributions to ensure that the Guidance, when finalised, meets the needs of medical practitioners and others, and enables them to support the delivery of fair and person-centred outcomes.

The consultation asked nine substantive questions and all but one contained both a closed response option (i.e. respondents were asked to indicate if they agreed or disagreed with the various statements/proposals using a 'yes' or 'no' option) as well as an open-ended component, inviting respondents to explain their answer in more detail. The only question that did not contain a closed response component was the final question, which invited additional comments.

The survey was administered directly by the Scottish Government using the Questback survey facility. Emailed and written responses were also invited.

The consultation opened on 12 February 2019 and closed on 19 April 2019.

Responses Received

A total of 54 responses were received. There was an even split between responses from organisations (35%), Registered Medical Practitioners (31.5%) and Other Healthcare Professionals (31.5%). The one 'other' response came from an individual.

Response received from	Number	Percentage
Organisations	19	35%
Registered Medical Practitioners	17	31.5%
Other Healthcare Professionals	17	31.5%
Other	1	2%
Total	54	100%

The majority of organisational responses came from professional bodies that represent medical professionals or from the third sector (i.e. those who provide support or assistance to individuals who may be eligible for the relevant benefits). Annex A provides a full list of organisations that responded.

Approach to Analysis

Most responses (n=44; 81%) were submitted directly via Questback, with the remaining nine responses being submitted either by email or letter, directly to the Scottish Government.

All responses were read and logged into a database, and all were screened to ensure that they were appropriate/valid. None were removed for analysis purposes.

Closed question responses were quantified and the number and percentage of respondents who said 'yes' or 'no', were 'unsure' or who provided 'no response' to each question is shown below^[1].

While the length and level of detail provided in response to open questions varied considerably, most gave full responses to support their closed answers. Some respondents did not answer every question, and responses also varied in how closely they answered the specific questions asked.

Similarly, for some questions, although only those who did not agree or said 'no' to closed questions were asked to provide additional information to support their response, many who either did not provide a closed response or who said 'yes' went on to provide additional narrative. This was analysed and is reported below.

The main reasons presented by respondents both for and against the content included in the consultation were reviewed, alongside specific examples or explanations, alternative suggestions, caveats to support and other related comments. Verbatim quotes were extracted in some cases to highlight the main themes that emerged. All extracts from responses have been anonymised as no formal consent was sought to publish material alongside respondents' identities.

Report Presentation and Research Caveats

It is important to note that many who took part in the consultation did not answer the questions that were asked directly and, instead, provided more general comments on the new approach to BASRiS. There was also much repetition in some responses, with similar answers being given in response to multiple different questions. Given that this occurred in response to several of the posed questions and was characteristic of a large volume of the data returned, the material was included in the analysis. In some cases, however, material that was provided in response to one question is presented elsewhere in the report, where the fit was considered more appropriate. Findings are presented as they relate to each question in the consultation, in turn.

Another feature of the data was that open-ended explanations were more often submitted by those who gave negative responses, rather than those who supported different aspects of BASRiS. While the findings presented below may, therefore, have some inherent negative bias, it is important to note that all but one question attracted more positive than negative responses when considering the closed data only.

The tables below show the difference in views expressed by the respondent group as a whole. Where there was a difference in view expressed by respondent type (e.g. organisations of individual medical professionals), this is picked up narratively in the report. As a guide, where reference is made in the report to 'few' respondents, this relates to three or fewer respondents. The term 'several' refers to four or more, but typically less than ten. Any views expressed by large numbers of respondents (i.e. ten or more) are highlighted throughout.

Finally, although a reasonably large number of responses were received overall (n=53), it is worth stressing that the views presented here should not be taken as representative of the wide range of stakeholders invited to respond to this consultation, nor should they be generalised too broadly. They simply reflect the views of those individuals and organisations who chose to respond.

This final report on the analysis of the managed consultation was concluded in June 2019. It was determined appropriate to await publication in order that it aligned with the publication of the CMO Guidance itself.