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

Additional Comments

To ensure that the consultation was as effective as possible in informing the final Guidance document, respondents were invited to share any additional comments that they had, other than feedback provided in response to direct questions.

Q9. Do you have any further comments?

A large number of respondents (32) provided additional comments on the Guidance, and these are summarised here.

Specialist Nurse Practitioners

The majority of the additional comments related to the decision to disallow specialist nurse practitioners to complete the BASRiS form.

The main contentions with not permitting nurses to sign the BASRiS form were:

• that most GPs are too busy to complete the administrative work associated with filling in the forms and that nurses may be better placed to complete forms in a timelier manner and at the most appropriate times;
• that nurses often know the patients best, and so may be able to make more rounded decisions, as well as being able to negotiate their working timescales to facilitate sensitive discussions with patients, their families and carers/supporters in a more relaxed fashion;
• as a consequence of the above, not engaging nurses may mean that eligible patients do not receive the benefits they are entitled to and/or not receive them in a timely manner;
• that nurses currently do not charge for completing the DS1500 and the same rule would presumably apply to the BASRiS (as opposed to General Medical Practitioners who would charge for their time), thus making it more cost effective to employ nurses in completing the process; and
• not permitting nurses to sign the forms in Scotland may place benefit recipients in Scotland in a worse position than those elsewhere in the UK:

"That only Registered Medical Practitioners, and not specialist nurses, can sign BASRiS forms is a real cause for concern and puts terminally ill people in Scotland in a weaker position, in this regard, to those in the rest of the UK. We would like to see specialist nurses permitted to sign a BASRiS…The vast wealth of knowledge and experience that specialist nurses/clinical specialists have must be effectively utilised." [MND Scotland]

These more practical issues aside, several comments were made in response to this question that excluding nurses could be perceived as undermining their experience built up in this area over a number of year and as deskilling the profession:

"Our current Primary Care strategy emphasises alternatives to seeing a GP and the important skills that other primary care professionals have. Asking a medical practitioner to sign a form when the assessment has been carefully undertaken by another professional will undermine this." [Registered Medical Practitioner]

"…we are shocked and disappointed that our role in supporting people with terminal illness, is overlooked and not valued. Very disappointed." [Other Healthcare Professional]

"I feel that it this decision will be viewed as insulting to the skills, experience and expertise that the CNS/ANP workforce bring to the care of complex patients and will not help plummeting morale. These nurses have often spent years increasing their knowledge through theoretical and experiential learning and this is being completely ignored in this instance." [Individual]

Other comments included that nurses may be more familiar with information around benefits and other financial supports available, based on their experience built up over time, and that nurses were more likely to be able to provide continuity of care. They may also have better knowledge, awareness and understanding with other local support services that the patients or their family may benefit from accessing (and could advise as part of the BASRiS process).

Importantly, many respondents stressed that they would not wish to see the role moved exclusively to nurses, but rather that the option for them to complete forms alongside and in collaboration with GP colleagues was important.

This was main area of the consultation that respondents wished to be reconsidered:

"We are disappointed that the Scottish Government chose to restrict the ability to sign people off as terminally ill for access to social security in Scotland to medical practitioners. We understand that it is not the preference of the Scottish Government to allow registered nurses to sign off BASRiS forms, but we would ask that this be reconsidered and if there is any scope within the legislation for nurses to be able to sign off BASRiS forms." [Marie Curie]

GP Workloads

On a related note, additional comments were made at the end of the consultation that the changes being introduced by BASRiS may impact negatively on GP and other medical practitioners' workloads:

"This has potential to cause significant workload and may delay benefit claims for those in most immediate need." [Registered Medical Practitioner]

"I think it is inappropriate that only doctors will be allowed to complete the forms. This seems to go against the drive from the Scottish Government to have people health care needs delivered by the right person in the right place at the right time. By restricting this to doctors…it will also inevitably lead to increase in doctor workload which will take the GP away from delivering care as an 'expert medical generalist' as intended. This could lead to harm for other people who will find it harder to get access to their GP. I suggest allowing nurses and suggesting that the form is completed by the doctor or nurse who knows the patient best or who suggests completion of the form both in primary and secondary care." [Forth Valley Local Medical Committee]

Some again stressed the costs associated with this task for GPs and urged that additional funding would be required to support the change, if implemented:

"It is also essential that General Practice is remunerated with an appropriate fee for this work in order to lessen the strain on GP capacity." [Forth Valley Local Medical Committee]

One other organisation suggested that an increase in demands brought about by BASRiS may also uncover or make clearer the need for wider support and care planning for people with progressive illness, and that the Scottish Government would need to be alert to this:

"…a significant issue will be the increase in demands on GPs to consider people with progressive illness for BASRiS. This will hopefully emphasise the importance of other aspects of palliative care, especially starting anticipatory care planning and providing easy access to care in and out of hours. This is likely to take considerable time, and primary care policymakers and planners should be alert to this increased area of demand, of early palliative care or looking after people with advanced illnesses at home. Hopefully the early benefits may assist more people to stay at home for longer." [The Royal College of Physicians of Edinburgh]

Overlaps between BASRiS and DS1500

Some respondents again used the 'additional comments' to stress that they perceived that the parallel operation of BASRiS and DS1500 may be confusing for some (both professionals and non-professionals). If not managed well, it may also lead to additional administrative burdens for both patients and professionals, it was felt. Additional and ongoing clarity was sought in this regard:

"Macmillan would welcome on-going clarity from the Scottish Government and Social Security Agency that those who have an existing DS1500 when the legislation comes into force will automatically qualify under BASRiS. More broadly, while we appreciate that there will now be two distinct processes for determining access to devolved and reserved terminal illness benefits, our understanding of the policy intent is that future claimants who meet the criteria for a DS1500 would also qualify under the BASRiS criteria. We would be concerned about any reduction in access for these claimants, and would welcome reassurance that the Social Security Agency and the Scottish Government will explore how to limit the administrative burden on these individuals of making two separate applications." [Macmillan Cancer Support]

Another questioned if BASRiS would be used as a form of evidence for patients wishing to access other benefits, as this was not clear:

"[The Guidance] appears to suggest that receiving BASRiS means being treated as being terminally ill for the purposes of disability assistance, and that not receiving BASRiS means being treated as not terminally ill. In contrast, a DS1500 is not required to receive PIP under special rules, it is simply a piece of evidence that can be used. It would be useful to clarify what the intention is as to whether a BASRiS form is required or is a form of evidence. We do not believe that the position in Scotland should be more stringent, therefore it should be clarified that a BASRiS form should not be necessary but sufficient." [Child Poverty Action Group in Scotland]

Such clarification was particularly important, they stressed, in cases of appeal:

"This is also important to ensure that individuals have a clear right of appeal. Appeals by applicant regarding decision made by Social Security Scotland - it is not clear that an individual will have a meaningful right of appeal against determinations involving BASRiS. If it is the case that a person can only qualify for disability assistance on the basis of terminal illness if they have a BASRiS form, and cannot challenge the clinical judgement, then it would appear that any appeal about whether or not a person qualifies as terminally ill would be bound to fail even if a person had other medical evidence. Appeal rights are a fundamental part of a rights-based system and it should therefore be clearly set out if individuals will have a right of appeal against a determination involving terminal illness." [Child Poverty Action Group in Scotland]

Ensuring that the appeals process in Scotland was as clear, transparent and equitable as the process for reserved benefits was seen as key.

Communication and Consent

A small number of comments were made that the Guidance could be strengthened in relation to communications. In particular, one respondent noted that a section on inclusive communication was included for children and young people but that there was no equivalent for adults. Some patients who may be eligible for BASRiS may lack capacity and so guidance could usefully be included for clinicians on how to deal with clients with cognitive and communication issues, it was suggested.

Another respondent proposed that the paragraph text which discussed raising the issue of BASRiS with patients, carers and families should be moved under the sub-heading 'Communication with your patient, carers and family' and that links to relevant support websites could be included^[9]. The same respondent suggested that communication was also a key process issue and so could be mentioned in a side box parallel to the top level of the flowchart in Section 2 (and one other respondent endorsed including considerations around raising the issue of BASRiS with patients, carers and families in the flowchart).

On the topic of consent, one respondent noted that, currently, claims for PIP under special rules can be made by a third party with or without the consent of the claimant and that they do not have to be an appointee nor a guardian (S 82 (5) of the Welfare Reform Act 2012). This is confirmed by the DWP's Guidance, they noted. The BASRiS Guidance, as currently drafted, suggests there will be no similar provision for disability assistance and the respondent viewed that this was an important provision and there would be less support for terminally ill claimants in Scotland if this provision were not included in Scotland.

A different respondent noted that it could be made more explicit that patient consent would be required before medical practitioners have conversations with carers and family members, and that the Guidance could also be clearer regarding how consent would be taken and how evidence of consent would be stored. Another respondent also sought clarification around such conversations and the time/resource requirements implied:

"The Guidance outlines that a doctor should, where possible, consult family members and seek evidence prior to making a decision…We are concerned that this may create a burden on clinicians and families, as well as cause delays. It should be the role of doctors to make the clinical judgement on the condition, rather than families. It may also be that some family members are not aware of the individual's condition or are experiencing some denial about the terminal nature of it. It would be helpful to clarify what 'where possible' means here. We believe that this process should not cause delays, give rise to confidentiality issues or cause distress. It may be useful to add: 'where this will assist a decision to be made, the patient has given permission and it will not result in additional delays.'" [Child Poverty Action Group in Scotland]

The same respondent also noted that, if an individual is unaware of their prognosis then the name and address of the patients' legal representative must be supplied. This, they suggested, implied that a legal representative may be needed in such cases (which is different from the UK system) which they perceived was overly restrictive. Further guidance on this matter was urged and the same respondent also noted that proof of residence in Scotland should also not be required.

Ongoing Engagement

Finally, several respondents stressed the need for ongoing consultation with relevant stakeholders in finalising the Guidance, as well as engagement during and after implementation:

"We would appreciate seeing the draft Guidance produced for the public and having an opportunity to feed back our views on it, if possible." [Breast Cancer Care and Breast Cancer Now]

Others suggested that the final draft Guidance should be piloted or 'road tested' with a group of Registered Medical Professionals before full roll out:

"…it is important that the draft Guidance should be "road tested" prior to nation-wide implementation. This would involve something like a group of "typical" GPs being asked to use the draft Guidance and complete the form based on several different case studies. They would then be asked to reflect on and discuss the experience and the utility of the Guidance. The judgements recorded on the forms could also be compared for consistency. Road testing should also consider hospital teams, as a significant number of DS1500 forms are currently completed in this setting." [Scottish Partnership for Palliative Care]

"We…would like to see a group of GPs apply the guidelines to a number of case studies. Feedback on the guidelines, the form and how they used their clinical judgement could be used to support the final version of the guidelines." [Marie Curie]

This would help give an idea of its robustness in supporting clinical judgement and reducing variation of implementation, it was suggested. Given the importance of ongoing monitoring, one respondent also questioned if additional data fields should be added to BASRiS:

"The BASRiS form will be the key document in building a data set which enables implementation to be monitored and evaluated. Are there other fields necessary which would enable the accessibility, reliability, consistency and timeliness of the BASRiS process to be evaluated?" [Scottish Partnership for Palliative Care]

Miscellaneous

Other miscellaneous comments/suggestions included:

• that the government may need additional funds to finance implementation;
• that any reference to doctors being prepared to justify their decisions to 'members of the public; be removed (as this would be a breach of patient confidentiality);

Others simply commented that they welcomed the Guidance, in principle, and hoped that it would be a useful document, once revised:

"We welcome the Guidance and value the work that has gone into producing it. We are optimistic that it can be refined into a more successful document that will drive more effective identification of people who can - and should - benefit from access to disability benefits under special rules…" [Parkinson's UK Scotland]

"Marie Curie fully supports the Scottish Government's approach to supporting terminally ill people access social security in a fair and dignified way. In including a definition of terminal illness based on clinical judgement there is now the potential for all those who are terminally ill and need to access social security quickly, in a dignified way and at an amount that will reflect their needs, being able to do so. This is in stark contrast to the previous definition used to support access to disability benefits used by the DWP which defines people as terminally ill if they can prove they have less than six months to live, which sees many people missing out on the support they need." [Marie Curie]