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.

The Process for Accessing BASRiS

Under the new system, Registered Medical Practitioners, who certify that their patient is terminally ill and is eligible for benefits under special rules will complete the Benefits Assessment under Special Rules in Scotland (BASRiS) form and submit it to Social Security Scotland. The Guidance includes a flowchart for eligibility for BASRiS form completion, designed to be a useful reference in assisting the process. A copy of the draft form was also provided as well as case study examples showing how different types of cases should be managed.

Importantly, the Guidance makes clear that, while Registered Medical Professionals may need to seek advice of specialist nurses or others involved with the patient's care (professionally or non-professionally) to inform the decision, the new form can be completed only by Registered Medical Practitioners. This is in contrast to the DS1500 form used for accessing benefits under UK Social Security legislation, which can also be completed by specialist nurses.

The first part of the consultation sought views on whether the Guidance was clear about the process for accessing BASRiS.

Q1. Is the Guidance clear about the process for accessing benefit assistance under special rules in Scotland ( BASRiS)?
Response Number Percentage
Yes 36 66%
No 15 28%
No response 3 6%
Total 54 100%

Two thirds of respondents (66%) indicated that the Guidance was clear on process.

The flowchart and case study examples and other annexes were mentioned as being particularly helpful:

"There are clear explanations around the process and the examples are useful to assist with clarify[ing] the process. The flow chart is also useful in supporting the process." [Other Healthcare Professional]

"…good easy to follow guidance with helpful worked examples." [Royal College of Occupational Therapists]

There was also a sense that providing guidance of this nature, with a clear definition that removed the specified timescale would (in principle) enable medical professionals to focus on the patient without being expected to predict a time to death (although this was caveated by some in response to later questions).

Some who said that the Guidance was clear on process overall did, however, caveat their response by suggesting that it was quite lengthy and perhaps unnecessarily so. Some changes may be needed to maximise clarity:

"Overall, we do believe the document can work and the guidelines will support medical practitioners to make clinical decisions around who is terminally ill for the purposes of accessing social security, but a number of key changes need to be made." [Marie Curie]

Specific comments were made that the Guidance was complex when describing legal implications and that this type of information may be unnecessary:

"I think this is unlikely to be abused in the hands of doctors so removing some of the legal issues from the main body of the text and emphasising trust in clinical expertise would be appropriate." [Registered Medical Practitioner]

Others who said 'no' to this question also suggested that the document was generally too wordy, unstructured, too long and contradictory and perceived that this could be problematic:

"…we are concerned that the Guidance as a whole is not as clear and direct as it could be. We believe that the document should be restructured and edited in order to make sure that it is as easy as possible for busy clinicians to follow. Overly complicated Guidance could act as a barrier to people who need access to benefits under special rules from being able to do so." [Parkinson's UK Scotland]

While concerns about the length and structure of the document are discussed in more detail below (see Question 3), the more specific concerns regarding understanding of process are presented under themed headings below.

Reserved and Devolved Benefits

While one respondent noted that the document was clear on the difference between devolved and reserved benefits and the different processes for accessing both under special rules, several others suggested that this was one of the main areas of the Guidance (and policy change) which may cause confusion.

Indeed, several respondents commented that greater clarity was specifically required in relation to the need for BASRiS to operate alongside the DS1500[2]. Having the two parallel processes and forms could, it was felt, lead to confusion going forward and may also lead to some repetition of processes:

"It seems unfortunate that this is an addition to a DS1500, rather than replacement, this surely makes things more, not less, complex?" [National Advisory Committee for Neurological Conditions]

The notion of automatic eligibility also seemed unclear to several respondents:

"It is not clearly enough explained what happens if someone is applying for disability assistance or for a higher rate of disability assistance on the basis of terminal illness and: they already have entitlement to a reserved benefit on the basis of a DS1500; they are also applying for a higher rate of a reserved benefit on the basis of a DS1500; they are also making a new claim for a reserved benefit as well as disability assistance. The aim must be to ensure that having two parallel processes to evidence terminal illness is no hindrance to people being fast-tracked to their entitlements. The surest way to achieve this would be that in any circumstances a DS1500 would be accepted instead of a BASRiS form. The Guidance, including the flowchart (and the disability assistance regulations) should reflect this." [Child Poverty Action Group in Scotland]

One respondent stressed that, while the Guidance may be clear for medical staff accessing forms, it could be confusing to patients, especially if applying for benefits under both the devolved and reserved systems at the same time. The fact that this may entail communication with two separate healthcare professionals was also seen as potentially confusing for some:

"I think the Guidance is clear for medical staff accessing forms but will be confusing for patients as they will need two forms if they are applying for disability benefits and other benefits not devolved to Scotland. They may also have two health professionals completing two forms as GP/Medical staff will be completing BASRiS form and Specialist nurses will be completing the DS1500s as previously." [Other Healthcare Professional]

Another indicated that the two parallel processes needed to be more clearly signposted in the title of the document:

"The fact that BASRiS replaces DS1500 for benefits devolved to Scotland is mentioned, but not clearly enough in the title of the document. There was confusion during discussions with clinicians about the implications of this legislation, and accompanying Guidance, and a lack of awareness that DS1500 is being replaced by BASRiS in certain circumstances." [RCGP Scotland]

While the concurrent operation of the two processes is explored throughout the draft Guidance document, it is perhaps not explicit enough and this may lead to confusion among medical practitioners, it was suggested, especially if they fail to read the Guidance in detail, due to time pressures.

The Role of Clinical Nurse Specialists

A second dominant concern regarding process was linked to the role of clinical nurse specialists (CNS). Several used this question (as well as later questions in the consultation) to make a point that, as nurses will not be allowed to complete the BASRiS form, it may mean that many patients will not receive their benefits in as timely a manner as they do at present:

"The process will now be less efficient as the nurse specialists who know the patients well, will be unable to complete the form. It is a step backwards, where nurses fill in a form and then bring it to a doctor to sign. A process to make it less complicated and more accessible to those in need, just became less efficient." [Other Healthcare Professional]

Others commented that they simply did not understand the rationale for excluding nurses from being able to sign the BASRiS form and argued strongly against their exclusion, especially in general practice. This was on the grounds that it would be too time consuming for medical professionals, especially since the broadening of eligibility criteria may result in more requests to access such benefits:

"It is not clear why nurse specialists can no longer fill out the form. Nurse specialists who have contact with patients eligible under special rules, are well positioned to know such patients. My concern is that medical staff due to other commitments will not fill out the form in a timely manner for patients and many patients will miss out. It will also take away a process that is already working by meaning that nurse specialists/other health professionals will be chasing medical staff to fill out the forms. This will make the process itself very inefficient on a day-to-day basis." [Other Healthcare Professional]

There was also concern that having two forms to access reserved and devolved benefits would compound pressure on doctors' time, unless the intention was that responsibility for decision making only applied in cases where a patient was ineligible for a DS1500 (as specialist nurses are able to complete these forms).

The same respondent also indicated that the decision to exclude nurses had, perhaps, been rushed and not fully considered:

"More generally, the amendment that limited decisions to Registered Medical Practitioners was published less than a week before the Social Security (Scotland) Bill passed at stage 3. This meant there was simply not enough time for the wording limiting completion of these forms to medical practitioners to be fully considered or scrutinised. While we acknowledge that it would require further primary legislation, we believe there is a strong case for a future amendment to the Social Security (Scotland) Act to allow specialist nurses to complete BASRiS forms on the same basis as they can currently complete DS1500 forms." [British Medical Association (BMA)]

Indeed, the exclusion of nurses and the perceived absence of rationale for this was a cross-cutting theme for the consultation and is discussed in relation to some of the other questions below.

Clarity Regarding Eligibility

While some again welcomed the aspirations of the Guidance, and respondents agreed that having a workable definition of 'terminal illness' was key, several commented that the Guidance could be clearer in this respect, as well as being clearer with regard to eligibility:

"I think that currently there would be variable interpretation of the definition." [Registered Medical Practitioner]

"As it is currently drafted, this Guidance does not provide anything approaching clear definitions of when conditions should or should not be considered terminal for the purposes of this Act and is therefore wholly inadequate. While having sufficient flexibility in the system for doctors to use their professional judgement is important, there needs to be a credible set of criteria against which this judgement can be applied. Without robust definitions, doctors will be left in the impossible situation of not knowing what should or should not trigger eligibility for BASRiS forms." [British Medical Association (BMA)]

"This new proposal by using the word 'terminal' is not clear enough in my opinion." [Registered Medical Practitioner]

Suggestions were made that more information may be needed in particular around assessments involving some cancers and lymphoma with long survival times as well as secondary cancer and some other progressive conditions (e.g. diabetes, Chronic Obstructive Pulmonary Disease (COPD), ischaemic heart disease, cancer, cerebrovascular disease, dementia, chronic lung conditions, multiple sclerosis, cystic fibrosis and potentially even alcohol or opiate dependency). One respondent specifically suggested that reference to 'cancer' should be replaced with reference to 'advanced, incurable cancer' with some other qualifiers (where this appears in Annex B).

The main concern around having a 'loose' definition was that it could lead to a significant increase in applications for the benefit as well as place too much responsibility on medical professionals for something which respondents felt should be clearly set out in legislation. Doctors should not be expected to be the ones to set limits on what conditions are or are not eligible for assistance, it was suggested and these could be more clearly stipulated by government in the Guidance. While several did support the matrix in Annex B, and the indicators were largely welcomed, refinements may be needed to provide a more workable and definitive way of determining eligibility, it was suggested.

Several respondents also commented later in the consultation that Annex B could be reworked and strengthened, or moved to the main body of the report if it was to be used to determine eligibility.

Clarity Regarding Timescales

On a related note, several respondents raised the issue of timescales and whether it was appropriate to require medical professionals to make subjective assessments in this regard or to raise the issue of life trajectories in discussions with patients:

"The Guidance should not ask Registered Medical Practitioners if they would expect their patient to die 'very soon'. This is completely contradictory to the content and purpose of the legislation. Regular reference in Section 7 of the Guidance to Annex B is therefore highly problematic. Instead, the Guidance should highlight that Registered Medical Practitioners should not introduce timescales, in any way, into their prognostic judgements." [MND Scotland]

"…we consider there is further scope to clarify the Guidance particularly around the requirement of not introducing timescales into their prognostic judgements as per the definition of terminal illness in the act." [Children's Hospices Across Scotland (CHAS)]

Several respondents also stressed that they perceived it wholly inappropriate that doctors be asked to make functional assessments:

"…the Guidance should be very clear that: the definition and Guidance require that doctors should not introduce timescales into their prognostic judgements; and the definition and Guidance mean that doctors should not base their judgement on particular needs of a patient, nor is there a requirement that patient needs or functional impairments should be assessed." [Scottish Partnership for Palliative Care]

Greater clarity or tightening up of the definition for patients with life-limiting illness and where treatments may prolong life but not cure was needed, it was felt. Some comments were made that the case studies could be tightened-up to add clarity in this regard too (and this was also discussed in relation to Question 5, discussed below). Some stressed that it could be clearer and more 'up front' that different definitions are in play for different benefits.

Other Suggestions for Adding Clarity

Other suggestions for making the process clearer still, and which were mentioned in response to this question rather than later on, included:

  • adding more indicators of progressive illness in the Guidance, for consideration (e.g. ability to cope with activities of daily living and other generic markers of declining health);
  • that occupational therapists be specifically named as professionals who could be consulted for advice at Section 10, as well as Welfare Rights Officers;
  • moving some of the bullets listed under the subheading 'Principles' to elsewhere in the document (i.e. those that may be better described as 'facts');
  • including more detail about where to find the form on the Social Security Website (and possibly a web link) and highlighting in the Executive Summary that further information on the form can be found in Section 21; and
  • avoiding use of the term 'passported benefit' as this may be jargonistic and unclear (alternatively, expanding on the meaning of this phrase the first time it is used in the document may add clarity).

One respondent proposed using the term 'Registered Medical Practitioner' throughout the document so as to avoid confusion, removing references to GPs. The same respondent suggested that it should be made clear throughout the document that, while Registered Medical Practitioners can make a 'judgement', it is Social Security Scotland that will make the final benefits award 'decision':

"The clinician makes a 'judgement' on terminal illness, BASRiS form is submitted on which Social Security Scotland makes a 'decision'. The clinician is therefore not the 'decision-maker'." [Children's Hospices Across Scotland (CHAS)]

Other more general comments included that more advice or guidance on process would be welcomed, especially for non-specialist service providers, and which could be easily shared among professional networks.

Overall, however, while there was scope for the Guidance to be clearer, responses also indicate that Guidance was nonetheless welcomed to assist patients and families in accessing the benefits to which they are entitled:

"SPPC welcomes the intention of the Act and Guidance to broaden access to benefits under special rules. The Guidance has the potential to enable more people with medical conditions other than cancer to get access to benefits under special rules. We welcome the potential for this Guidance to support dignity and wellbeing towards the end of life." [Scottish Partnership for Palliative Care]



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