National Implementation Group for Terminal Illness meeting minutes: 9 July 2020

Attendees and apologies

• Dr Linda de Caestecker
• Dr Jenny Bennison
• Sandra Campbell
• Dr Pat Carragher
• Richard Meade
• Susan Webster
• Helen Malo
• Richard Gass
• Dr Mini Mishra
• Meg Sydney
• Margaret Grigor
• Shonagh Martin
• Jo McKay
• Gordon Dawson

Apologies

• Donna O’Boyle
• Dr Teresa Cannavina
• Claire McDermott
• Iain Macritchie
• Claire Pullar
• Mark Hazelwood
• Rod Finan
• Dr Alison Potts

Items and actions

This meeting was due to take place in April 2020 but was postponed until July 2020 due to COVID-19.

Welcome

The Chair welcomed members to the fourth meeting of the National Implementation Group on Terminal Illness for Disability Assistance (NIG).

Update on actions from last meeting

Minutes from the previous NIG meeting were agreed and formally approved by the group.

Officials updated the group on the minor changes made to the CMO guidance. These changes include:

• the Consent section has been updated where a patient is unaware of their prognosis to align with FAQ. Members to let officials know if anything else needs to be added to consent in relation to children and young people.

References to appointees where an adult is unaware of their prognosis have also been added to this section.

• in the background section further information regarding eligibility to complete a BASRiS has been included pending the passing of the Bill (to include registered nurses)
• the appeals section and the FAQs will be aligned to reflect a patient’s right to request a second opinion
• changes made on the BASRiS form include making clearer where information has been withheld, and ensuring that a parent / guardian’s details are always included where the patient is a child

The group agreed that officials should begin to consider the rewording of the guidance to include nurses ahead of the legislation being finalised. Officials clarified that there are currently no plans to include allied health professionals in the list of people that can sign off a BASRiS form. The group agreed that the guidance needs to clearly reflect that allied health professionals cannot sign off BASRiS forms. Officials noted that this will be added into the FAQ’s and the relevant section of CMO guidance.

Members also agreed that the guidance should be regularly updated once it has been published. The guidance needs to be updated when the names of the new Scottish benefits are confirmed and until then, it should be clearly stated that the current names of the Scottish benefits will change.

Officials clarified that the copy of the CMO guidance circulated before the NIG February meeting was the last version circulated before the changes were made. These versions can be compared so that members can see all changes made. All changes made were minor changes and reflected the groups comments at the previous meeting.

It was suggested and agreed that future changes would be highlighted making it easier for members to agree.

Action point 1: members to let officials know if anything else needs to be done to the consent section in relation to children and young people. 

Update on Social Security Administration and Tribunal Membership Bill

Officials updated on the three Provisions included in the Social Security Administration and Tribunal Membership Bill relevant to terminal illness.

The first provision is to widen the category of who can make a diagnosis of terminal illness. Officials noted that the wording in the Bill refers to ‘Appropriate Healthcare Professional’ but this is to be defined in the regulations stating that it must include registered medical practitioners (RMP) and registered nurses (RN).

There is also scope to define criteria regarding skills and experience in the regulations to ensure only those with the right skills and experience undertake the role. This will be implemented in a combination of regulations and guidance and will be in line with the 5 criteria determined previously:

• must have appropriate skills, knowledge and experience to undertake the role and
• must be involved with the diagnosis and / or care of the patient and
• must be acting in their professional capacity and
• must work in accordance with a clinical governance framework and the requirements of your employers and/or contractual arrangements and
• must hold current registration with the General Medical Council or the Nursing and Midwifery Council

Officials added that all regulations will be in place prior to the first form of Disability Assistance (DA) going live.

The second provision is to allow Social Security Scotland to withhold information deemed harmful (by their medical professional) from the client. Officials explained that information will only be withheld from a client in the rare situations where a medical professional (RMP or RN) has determined that such information would cause serious harm to the client.

This can be applicable whenever a medical professional supplies information to Social Security Scotland which they deem would cause serious harm to the patient and have therefore withheld. Members agreed that it is rare for medical professionals to withhold information from a patient. Medical professionals would normally share information with their patient before completing a BASRiS form.

The third provision is to allow appointees for adults who are legally regarded as having capacity. Officials explained that a clear potential use of this provision would be to help ensure redetermination and appeal rights for clients where information deemed harmful (by their medical professional) has been withheld from them and their award notification letter would not refer to special rules.

There have been discussions and stakeholder feedback regarding how the appointee system will work in practice. There has also been engagement over the summer with DACBEAG and experience panels. This will ensure the guidance benefits from the insights of people with working experience of the current social security system, and will include provisions that cover reviews, disputes and mechanisms to challenge a decision.

Officials updated that the Bill was presented to parliament on Monday 27 April and the Stage 1 debate was held on the 24th June. The Bill should progress onto stage 2 in September and hopefully stage 3 towards the end of September.

Update on leaflets

Officials thanked members who gave feedback regarding the content of leaflets and noted that this has been passed onto those writing the leaflets. The next step for the leaflets is to undergo Social Security Scotland design and info graphics. Following that it will be sent for user testing and refined further. Members will get to see the leaflets again following the design phase and there will be scope for further input.

Update on FAQs

Officials thanked members for commenting on the FAQ document and noted that the document has been updated accordingly. Members agreed to sign off the FAQ’s. There will be minor changes going forward including the inclusion of nurses and further details from service design as they are available. There will be no change to the clinical content without requesting member’s agreement. Members will liaise with officials regarding FAQs relating to consent for children. Officials added that any changes made to the FAQ will have to be made to the CMO guidance.

Update on Delphi research

Officials updated members that Delphi research is currently paused due to COVID19 but welcomed any feedback regarding the appropriateness to request time for this from frontline clinicians. Members agreed that those who have time to respond, and are interested, will respond. Members suggested that as work on COVID-19 slows down and the launch of Child Disability Payment has been pushed back, the Delphi research should be started up again with a longer time scale.

Action point 2: Members to liaise with officials regarding FAQ’s relating to consent for children.

Dissemination and communication plan

Regarding table of contacts to whom NIG will disseminate information to, officials queried whether the Network of 3rd sector organisations already includes organisations such as Marie Curie. Officials will follow this up via email. It was also suggested Child Poverty Action Group (CPAG) be added. A member was agreed to be the NIG contact for RCN.

Officials updated the group that since the February meeting, clear routes for dissemination within primary and secondary care have now been established following discussions with Andrew Wilkie’s team (Health Directorate, Scottish Government). The plan has been updated to reflect this.

Discussions around where the information hub will be published are ongoing although this is likely to be on the Social Security Scotland website. The content area of service design have agreed to help design this and prepare documents to be published.

Developments on the clinical helpline were shared. Officials updated the group on wording agreed with Social Security Scotland Officials regarding that they cannot discuss clinical details of any individual cases because it would be inappropriate for them to influence a clinician’s clinical judgement. The Social Security Scotland helpline will include support for clinicians to navigate the CMO guidance and offer general advice, for example regarding the level of detail required on a BASRiS form. Officials clarified that the CMO Directorate can talk clinicians through their professional challenges to help them come to their own decision and provide ‘pastoral’ support but they can’t comment on aspects of individual cases. The first point of contact should always be the Social Security Scotland helpline and if necessary, Social Security Scotland will redirect clinicians to talk to the CMO Directorate.

Action point 3: officials to follow up discussions regarding the network of 3rd sector organisations via email and update the communication plan.

Auditing the implementation of the CMO guidance

Officials explained that this paper is the beginning of the framework for auditing the implementation of the CMO guidance. They have spoken to a number of people to find out what information is available to audit, what information is relevant, and how it can be collected.

Members agreed that they were happy with the paper so far as outlining a framework to be used to undertake an audit and are looking forward to seeing future updates.

Officials clarified that systems are currently being set up to begin collecting data for each benefit when they go live.

Officials clarified that ethnicity will not be collected as there is no requirement to collect that data, so collecting it would be a breach of the Data Protection Act.

Officials noted that data collected through the BASRiS form will include the client’s name, date of birth and diagnosis. The diagnosis will be a free text box and if they were looking to pull out specific diagnoses, that would be done through the current ICD10 codes.

Members enquired whether the initial audit would include all applications for SRTI Child Disability Payment and what the sample size might be for Disability Assistance for Working Age People. It was confirmed the audit for children would include all those in receipt of Child Disability Payment under SRTI rules. For the adult benefits, appropriate sample size has yet to be determined.

Service design update

Officials gave an update on Service Design:

• the design of the end to end process for the agency to receive the application, receive the BASRiS form, and start the payment is going well
• they will be going to the internal governance board to take endorsement of the journey
• they are currently testing and refining the operational guidance and the Decision Making Guidance
• they are currently working with Learning and Development colleagues to confirm that they understand the processes so that they can start planning learning requirements
• they can now start advising on agency resource requirements around the teams that will be specially trained to deal with applications under special rules
• they are currently working with Social Security policy and Social Security programme colleagues to develop the Clinicians helpline. A high level process map is in place to do this
• they have been progressing work on the medical codes which will describe the conditions

Clinicians helpline - members queried whether there should be either a web chat or email option as well. Officials agreed to explore whether this is a possibility.

Officials updated that they are currently working on what the BASRiS form is going to look like. Officials requested feedback on how big the free text box for a diagnosis should be. Feedback was given and it was also agreed the diagnosis must be in the box and can’t be in a separate document. Members agreed that it was reasonable to request that all information be written in black ink and block capitals.

Officials then updated on the development of the Fee Claim form. The form will ask for a name, supplier number, site number, the amount being claimed, the date the invoice is submitted and the BASRiS number. Officials explained that all GP practices will be given a supplier number and a site number. Members welcomed the simple nature of the form. Some members commented that GP practices already have their own supplier numbers for different activities. Others queried how this would work for anyone able to claim a fee who was not a GP.

Members discussed who would be able to claim a fee for BASRiS completion. It is understood that currently GPs are paid because signing a DS1500 form is not part of their contractual duties. Beyond this, current eligibility to claim, for example for those employed in the voluntary sector, is unclear. However members shared there have been some instances of doctors in the voluntary sector claiming the fee and donating it to their organisation. The issue of nurses being able to do likewise was raised.

Officials and members agreed that clarity in the fee arrangements for BASRiS is needed and once agreed this information will be included in the CMO guidance and the FAQ.

Action point 4: service design officials to consider an alternative route such as email or web chat for the helpline and provide an update on this at the next meeting.

Action point 5: service design to explore and update members on how all clinicians eligible to claim fees will receive their Supplier number and Site number.

Agree priorities for future meetings

Members agreed the priorities for future meetings including:

• continue to look into the fees issue and clarify who will be able to claim
• an update on auditing the implementation of the CMO guidance
• consider next steps for the communication and dissemination plan
• continue to update on the CMO guidance (and ensuring alignment in FAQs)
• update on the legal situation with RN’s signing BASRiS forms

Future dates

Date of next meeting is Thursday 3 September (10:00 – 12:00).

If the next meeting cannot be held in person, it will be held via Microsoft Teams.

AOB and close

Members agreed the ICD codes are the most practical codes as they are used universally by many National organisations.

Members agreed that if a BASRiS form doesn’t accompany an application, a practitioner in Social Security Scotland would contact the healthcare practitioner (clinician) named on the client’s application form. Members approved giving BASRiS information over the phone in the interests of speeding up the process but some commented that clinicians should always also complete a form, send it in and retain a copy on a patient’s clinical records. It was agreed the CMO guidance will need to be updated to reflect this process when finalised.

The Chair thanked members for attending and closed the meeting.