National Implementation Group for Terminal Illness meeting minutes: 7 November 2019

Welcome

The Chair welcomed members to the meeting and to the second gathering of the National Implementation Group on Terminal Illness for Disability Assistance (NIG). She tendered apologies from those members unable to attend, noted that one member would be joining the meeting via Teleconference and another member would be leaving the meeting early due to another appointment. The Chair moved to carry out a roundtable of introductions.

Update on actions from last meeting

The Chair advised members that all actions from the previous meeting had been completed, thanking members for their input and contributions.

The Chair moved to request if members who attended the previous meeting (19 September) had reviewed the minutes and were content to approve them. Members noted that the update regarding nurses signing BASRiS forms had been omitted and would like this included prior to sign off. Officials agreed and noted that legal colleagues are looking at ways to update the regulations to ensure it aligns with policy intent. Officials also noted that there will be an upcoming stakeholder event to discuss inclusion of specialist nurses and feedback from this will help ensure the proposed changes to regulations are fit for purpose. Officials also confirmed that an information leaflet to support clients applying for Disability Assistance through the SRTI (special rules terminal illness) route would be created in partnership with Social Security Scotland. Following the updates members approved the minutes from the previous meeting.

The Chair outlined the agenda for the meeting and asked if members had received the papers, had time to review them and if members would like to raise any items under AOB. Members requested a discussion around FAQs and consent.

The Chair moved discussion to the Terms of Reference (paper 1) and invited members to provide questions or comments. All members agreed to approve the Terms of Reference as a final version.

Action point 1: officials to include update regarding nurses signing BASRiS forms in minutes of previous meeting.

Action point 2: terms of reference approved.

Local implementation leads (LILs)

Relevant papers: Note on Local Implementation Leads (paper 6), and Draft Letter from CMO to Chief Officers of Health and Social Care Partnerships (paper 7).

The Chair opened discussion on the note, which sets out the role and remit of Local Implementation Leads and proposed communication channels. Officials provided an overview of the reasoning behind LILs; that there is a need to ensure information and supporting resources (including the CMO Guidance) reaches all clinicians who will need it. The role is not educational, it is about ensuring the information regarding the new definition is appropriately disseminated. Officials also advised that they have had contact with the secretariat of the Health and Social Care Partnerships (HSCP) Chief Officers Network, who has agreed to facilitate communication with HSCP. The next step would be for the NIG to agree the letter and send this to the secretariat.

Members noted that Health and Social Care Partnerships worked with primary care but raised questions around support for secondary care. Members stressed the need to ensure that the LIL understood they needed to support non-NHS clinicians. This led to a conversation around whether the LIL’s would also be asked by clinicians for advice with regards to whether a patient meets the new terminal illness definition according to the CMO Guidance. Some members felt this was quite likely in the early days of applying the new definition and associated guidance. Discussion moved to whether the role would also be public facing. Concern among members grew about the heavy demands which could be placed on a LIL. Members raised queries about geographic areas as in some cases there is more than one HSCP covering an area and some hospital locations would support individuals from many areas. This could lead to very heavy workload for some LILs.

Members asked if the letter would go to Health Board Chief Executives. Officials said that COSLA and the Chief Executives would be copied into the letter when it was submitted to the HSCP Chief Officers Group. Members felt contact would need to be made with the HSCP Chief Officers beforehand to ensure such a letter didn’t arrive ‘cold’.

Officials noted that Social Security Scotland have Local Delivery Leads who are working in the communities, have a wide network and connections, and are a public facing connection for support.

Members raised questions about what support would be in place for a patient when a BASRiS form is not given by a clinician (as they feel the patient does not meet the new definition). It was agreed that in this instance GPs would be the first line of support as they will have access to local networks and can signpost.

Members suggested that the role could have high demands at the beginning but that this would diminish as time progressed and there was greater familiarity with the new Scottish terminal illness definition and associated CMO Guidance.

Members questioned the purpose of the role and sought clarity around whether the key purpose is to share information with clinicians or to provide clinical advice to clinicians. Officials confirmed the role had been devised to ensure the dissemination of information to clinicians. It was not intended as an educational role. Officials advised that Social Security Scotland will also have clinical advisors in place, whose role is to support case workers. They may also be able to provide advice to clinicians. Officials also noted that it is inappropriate for the Chief Medical Officers (CMO) Directorate to respond to questions on operational responsibilities of Social Security Scotland. A possible helpline for clinicians will be explored as a way of supporting clinicians.

Members questioned whether, in the knowledge that Social Security Scotland had Local Delivery Leads disseminating information, there was actually a real need for LIL’s. Were LIL’s in fact duplicating the role others (in particular Social Security Scotland) will play? There was concern this could have an unintentionally negative consequence of causing confusion rather than ensuring clarity.

The Chair drew the discussion to a close and advised that an update would be provided to members in due course.

Action point 3: officials to speak with Social Security Scotland about the role their Local Delivery Lead’s will have with a view to determining if LIL’s are in fact needed.

Action point 4: if LILs are needed, officials to find out who chairs the HSCP Chief Officers Group and contact them prior to any letter being sent out asking for LIL’s.

Frequently asked questions

Relevant papers: Frequently Asked Questions draft (Paper 8)

The Chair thanked volunteers on the sub-group who have been working on FAQ’s. She opened discussion on the recent FAQ draft (paper 8) circulated prior to the meeting and welcomed suggestions. The Chair noted that the NIG would initially work on one collective copy for consistency but in the future this could be divided to tailored versions for clinicians and terminally ill patients (and those who support them) if required.

Members asked if the FAQs could start with the new definition for Terminal Illness to set the tone for questions and that the order of the questions needed to be revised. Members also advised that included is a question on what a BASRiS form is.

Discussion moved to questions around who signs the BASRiS form and the payment for this. The Chair advised members as per the conversation under item 2 work regarding inclusion of nurses is currently being developed with the Scottish Government legal team. There was some interest in having a discussion around fees at a future meeting. Members expressed that they felt the current fee payment for DS1500 completion seemed unfair in the way GP’s could claim it but nurses could not. Other members of the group expressed that there was a lack of understanding regarding who could/could not claim the fee currently. Officials shared that Scottish Government will consult on this issue going forward.

Members noted that there should be more clarity around informed and implied consent in the FAQ’s. Officials clarified that the BASRiS form does prompt clinicians regarding the need to gain and record consent.

Members raised the issue of a patient being made aware of the terminal nature of their condition other than in the very rare cases where this would be harmful to the patient and the sensitivities around this. Members agreed to provide a question on this for the FAQ.

The Chair asked if the subgroup working on FAQs were happy to continue and asked that members suggested questions and draft responses to these.

Action point 5: FAQ sub-group to include definition of Terminal Illness in the FAQs .

Action point 6: FAQ subgroup to include question explaining what BASRiS form is and revise FAQ structure.

Action point 7: Officials to work with FAQ subgroup regarding a question which clarifies that implied consent is not adequate for sending a BASRiS form – fully informed consent is required.

Action point 8: FAQ subgroup to continue to work on the FAQs going forward, drafting both questions and answers.

Service design update

Officials (Service Design, Scottish Government) provided the NIG with an update on general progress. They noted that good progress was being made and they had recently been working with Digital Portal colleagues on the application process for those with a terminal illness. They stressed Service Design are taking a person-centred approach and striving to make the process as seamless as possible. One particular focus has been on the process when the BASRiS form and the application form are submitted separately or where an application is received with no BASRiS. The issues of data-sharing throughout the process is another area requiring significant input. Service Design are also exploring the concept of a digital BASRiS, and advised they are conscious of the issues around numbering, distribution and potential fraud risks.

Action point 9: members to establish subgroup which provides points of contact for Service Design colleagues to approach with questions.

Agree priorities for future meetings – paper 3

The Chair noted the NIG will need to progress work to establish LIL, if this route is determined to be necessary and of value. With or without LIL, there will be a clear plan for the dissemination of information both to clinicians (within and out-with NHS). It was agreed that a sub-group be established to have oversight of communications with both clinicians and the public. Officials noted that the launch of each benefit will have its own communications plan, including publications and roadshows to communicate with the public. Hence the ‘Communications sub-group’ must work closely with officials. Officials raised that the whole NIG need to feed into the dissemination and communication plan.

Members also agreed to discuss the FAQ updated by the sub-group.

Action point 10: establishment of a Communication sub-group

Members to work with officials and have involvement in both public and clinician communications. This will include clarifying a clear plan for the dissemination of information to clinicians.

The Chair noted that, in line with the action plan, the NIG will review appropriate content for the easy-read leaflet at the next meeting. Officials noted that representatives from Social Security Scotland, who would be producing the leaflet, will be invited to the next meeting. Members suggested that officials could share a good example of a recent DNACPR leaflet.

Action point 11: officials to invite representatives from Social Security Scotland to the next meeting.

Action point 12: members to share DNACPR leaflet

Future dates

The Chair confirmed that Dr Jenny Bennison (JB) had agreed to be Vice Chair of the NIG and will chair meetings in the Chair’s absence.

The Chair invited members to feedback on the frequency of future meetings either every two or three months. Members agreed that as work on other Disability Assistance Benefits would be increasing in pace, meetings of the NIG every 2 months would be preferable.

Action point 13: officials to look at future meeting in April 2020 after Easter break

AOB and close

The Chair opened discussion for any other business. One member advised that they would like to offer assistance if the workgroup or any of the subgroups had questions relating to chaplaincy.

Next meeting 5 February 2020 (10:30 – 12:30)

Attendees and apologies

• Dr Linda de Caestecker
• Dr Jenny Bennison
• Sandra Campbell
• Dr Pat Carragher
• Dr Teresa Cannavina
• Mark Hazelwood
• Richard Meade
• Susan Webster
• Helen Malo
• Rod Finan
• Richard Gass
• Iain Macritchie (via Teleconference)
• Dr Mini Mishra
• Meg Sydney
• Claire McDermott
• Margaret Grigor
• Jessica da Costa
• Shonagh Martin

Apologies

• Claire Pullar
• Donna O’Boyle
• Jo McKay