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.

Support to Help Implementation

While the Guidance is primarily aimed at doctors, it also needs to be accessible to a wider audience, including those who are eligible for assistance, their families/supporters and other members of the general public. Respondent were asked what, if any, support may need to be in place to assist in implementation, for both professionals and non-professionals alike.

Q7. Can you think of any support that may need to be in place for professionals, the public and others to help the implementation?
Response Number Percentage
Yes 46 85%
No 5 9%
No response 3 6%
Total 54 100%

A large majority of respondents (85%) provided suggestions for support that may need to be put in place for professionals, the public and others to help implementation (those who did not, provided no justification for their responses).

Support for Professionals

A range of supports were mentioned for professionals, and these included:

  • training and awareness raising for health care professionals on the new BASRiS rules;
  • an easy-read version of the Guidance;
  • a health care professional helpline for BASRiS questions during the implementation phase; and
  • short video guides.

If training is to be developed and delivered, a range of suggestions were put forward for what this should cover, including:

  • more information on how the new process will be rolled out;
  • support for medics to understand the new BASRiS system including a clear understanding of the benefits system (including how to support patients with financial issues as this has traditionally been the role of nurse specialists who, it was suggested, have a clearer understanding of the benefits system);
  • training on the nuances of specific illnesses/conditions, such as motor neurone disease;
  • the time implications for medical staff completing the new BASRiS forms; and
  • communication skills training for GPs/Hospital doctors having difficult conversations.

Indeed, several respondents highlighted the importance of supporting or equipping health professionals in having sensitive discussions, particularly when the conversation involves babies, children and young people and their families/carers:

"Equipping health care professionals and the public to have challenging conversations about death and dying will be fundamental to ensuring both professionals and patient have these conversations about access to this benefit…We would welcome reassurance that the Social Security Agency and the Scottish Government that will continue to engage with professionals and claimants to develop information and support tools that ensure professionals are equipped to clearly communicate the differences between the two systems, as well as clearly written information for applicants." [Macmillan Cancer Support]

One organisation stressed the particular need to avoid use of reference to 'terminal' in such discussions, and for all involved in administration of BASRiS to be cognisant of this:

"The Guidance identifies the need for practitioners to engage in sensitive communications when engaging with people who may be eligible for BASRiS. It is not the role of the Guidance to equip practitioners with the communications skills required to undertake these conversations, though we welcome the fact that the Guidance signposts to helpful communications resources…despite excellent sensitive communication by clinicians, distress may be caused to people and their families if the word "terminal" is inadvertently and inappropriately used as part of the wider benefits process. Examples could include words used in written communication from the Benefits Agency, or used as part of verbal communication by Benefits Agency staff." [Scottish Partnership for Palliative Care]

The risk of such harm was also described (by the same respondent) as being potentially greater for people with some non-malignant conditions, and so of particular relevance to the Guidance[7]. Importantly, support around sensitivity of communications was seen as necessary not only for professionals, but also for the public and other non-medical support organisations.

Several respondents indicated that training and awareness raising for professionals needed to be wide-reaching to cover as many appropriate medical staff as possible, with specific suggestions including clinical nurse specialists, palliative care staff, occupational therapists and primary care teams. These training and awareness raising opportunities should also be available for Social Security Scotland staff, benefits advisors, information agencies and advocacy organisations, to ensure that they are aware of the changes and understand what they mean in practice.

Suggestions for other more practical supports which may need to be in place included:

  • additional government funding to support the fees medical practitioners may claim for completing the forms; and
  • additional doctors (as the Guidance indicates that nurses cannot lead on this assessment).

"GP's are already stretched within their caseloads and now to ask for them to complete more paper work, additional staff will be required." [Other Healthcare Professional]

On a related note, one respondent suggested that clarification was required on whether only GPs would be permitted to submit the fee payment form (as indicated on the example given) and the same respondent suggested that the payment process may also need to be simplified to support implementation:

"There needs to be a mechanism that makes payment easier - either a code for practitioners is the case for DS1500 forms and an easy way to opt out of fees - many hospital practitioners do not charge a fee for completing forms (you do list GMC registered consultants on the suggested payment form) whereas my impression is that this is less of the case in primary care so BASRiS may cost more in terms of fees." [Registered Medical Practitioner]

Although additional training and awareness raising activities would be welcomed for professionals, one respondent mentioned that time/availability of busy medical staff to attend such training may be limited. This may provide a barrier to future understanding of the new process.

As with many other areas of the consultation, this question also attracted a number of comments regarding the importance of including nurses in the decision-making process for BASRiS (and calls that specialist nurses should be able to fill in the new form). Although the Guidance sets out that medical professionals can seek information from other colleagues, including specialist nurses to aid the decision-making process and gather evidence to support their thinking, some suggested that this level of input or support from specialist nurses was not enough and that preventing nurses from having direct responsibility may lead to reduced efficiency and increased costs:

"By changing the legislation to only allow medical practitioners to complete these forms sets prompt decision-making back at least fifteen years. CNSs have been completing DS1500 forms for patients for decades now, which reduces delays in claims and ensures that people have support when they need it....The CNSs will result in delays as it will not be prioritised. It will create further anxiety for the patient and carer and add further stress to the CNSs workload as he/she will no doubt spend a great deal of time chasing these up." [Individual]

Finally, one respondent suggested considering asking professional subgroups to produce tailored guidance for their individual specialties.

Support for the Public

Specific supports which were mentioned for members of the public (including patients and their families or other supporters) included:

  • an awareness raising campaign to support its roll out[8];
  • information leaflets for patients, families and carers (including social care practitioners and third sector agency staff so that they can advocate on behalf of people in need);
  • distribution of leaflets, etc. at educational events; and
  • a simple/pictorial chart to help the public understand who to go to complete the forms and what they are entitled to.

Importantly, many respondents mentioned that the resources/supports that they would like to see put in place for professionals may be equally relevant for members of the public, e.g. if awareness raising campaigns are to be created, alternative versions may be needed for professionals and the public alike. Similarly, if printed educational materials/information videos, etc. are to be developed, equivalent versions should be made available to GPs, patients and their families:

"It will be important to have a good patient information leaflet so people know what to expect and what the language used means." [The Royal College of Physicians of Edinburgh]

Providing separate, equivalent documents for the public was seen as necessary not only as a means of ensuring that they understand and that information is available in an accessible way, but also because it may help reduce the time/demands placed on medical professionals in having to help explain the new processes to patients and their families, etc. It may also reduce the likelihood of claims from those who are not eligible:

"A supporting document for members of the public to explain clearly who is entitled to BASRiS would be helpful. This will help reduce workload for GPs which might otherwise result from people who are clearly not eligible requesting a form." [Registered Medical Practitioner]

"Would be concerned about high numbers of patients seeking one of these forms inappropriately and leading to significant increased GP workload. Good public information may support this as well as clear knowledge amongst other health care professionals who may be advising patients to seek these forms." [Forth Valley Local Medical Committee]

Indeed, the main focus of any public focused support materials were seen to be clear definitions around eligibility, qualifying periods, automatic eligibility and sign-posting to wider support services:

"The public needs to understand that there is no longer any qualifying period, but also needs to be made more explicitly aware of the difference between a chronic condition, and a terminal illness, to mitigate against the risk of large numbers of the public presenting to their GP, requesting help to access benefits which they may not be eligible for." [RCGP Scotland]

"…it will be very important to make clear in any public-facing materials that it is not expected that people will automatically qualify under special rules from diagnosis. When the rules around benefits are not made very clear, it can cause great confusion." [Parkinson's UK Scotland]

"While frontline services have an important role in increasing take up of benefits, it is crucial that independent and expert welfare rights advice is always available for individuals. Having robust referral systems in place could prove hugely beneficial as they can actively help people find the right advice. For complex areas of advice, such as social security, an active referral system can be more effective that signposting to advice." [Child Poverty Action Group in Scotland]

Providing better signposting for patients to additional support services may help to reduce inequity of access, it was suggested, and this could be referenced in the flowchart for eligibility as a way of standardising referral/signposting practices.

General Support and Information

Having an "expert point of contact" was suggested, as well as a 'helpline' and a poster with a short explanation and the key steps required to implement (although it was not specified for whom). Similarly, workshops were posited, but it was not made clear who these should be directed at.

Another specific concern was that the existing Guidance did not make clear how patients, family and other professionals can check if form has been completed. More information may be needed in this regard.

Finally, consistent with comments made elsewhere in the consultation, suggestions were out forward that the document should be made shorter and more readable with relevant information contained in an annex. Any support information or materials produced should also be in Easy Read format, it was stressed and be available in public areas and in workplaces.

Overall, there was support for what one respondent described as "a dual-track campaign in which an accessible, public-friendly resource is promoted alongside clinician-focused information." [RCGP Scotland]



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