National Implementation Group for Terminal Illness meeting minutes: 17 September 2019

Attendees and apologies

• Linda de Caestecker
• Dr Mini Mishra
• Dr Teresa Cannavina
• Richard Meade
• Donna O’Boyle
• Meg Sydney
• Jessica da Costa
• Virginia Lang

Apologies

• Dr Jenny Bennison
• Sandra Campbell
• Dr Pat Carragher
• Mark Hazelwood
• Susan Webster
• Helen Malo
• Rod Finan
• Richard Gass

Items and actions

Welcome

The Chair welcomed members to the meeting and to the first gathering of the National Implementation Group on Terminal Illness for Disability Assistance (NIG). She tendered apologies from those members unable to attend and carried out a roundtable of introductions.

Purpose of the National Implementation Group

The Chair asked officials to provide background and overview of how the group will operate and how work will be taken forward. Officials gave brief background concerning development of CMO Guidance (including noting that the guidance is not yet published) and outlined some key aims for the group. Officials stated the importance of working closely with service design (Scottish Government officials who will be developing the practical ‘Special Rules Terminal Illness’ system and processes). Officials proposed that between meetings sub-groups would work on tasks which would then be brought back to full meetings for comment, changes or approval.

Clarification was requested regarding the inclusion of specialist nurses as able to complete the BASRiS form. Officials shared that this change in policy had been approved by the Cabinet Minister for Social Security and Older People and officials were currently establishing how to make the legal changes required, happen in practice. If possible, this will be before the launch of Scotland’s DLA (child) replacement benefit in summer 2020.

Members noted the complexity created by the two different systems that will be in place for terminal illness benefits and including the need for practitioners to navigate and utilise these during and after the transition period.

Members also discussed the need for clarity around the difference in systems in order to aid practitioners in their decision making.

Membership – paper 1

The Chair invited members to review the membership document (Paper 1) outlining current members and their respective fields and invited comments. The Chair set out expectations of the group and the level of involvement, including working in small sub-groups on specific tasks. She advised that in the event a member cannot attend, members should send apologies.

Members discussed the membership. They highlighted the value of membership from service design colleagues. It was agreed that service design colleagues would be invited to present to the wider group at key milestones. Members agreed to inviting representation from the Scottish Partnership Forum and the Chair noted that there will be a Spiritual Care and Chaplaincy member joining the group.

Action point 1: officials to pursue Scottish Partnership Forum membership

Action point 2: officials to pursue Chaplaincy and Spiritual Care nomination

Action point 3: officials to update membership list, including contact details, and circulate

The Chair asked members to approve the publishing of members name, designation and contact details on the Scottish Government website. Following discussion it was agreed that only the members name and designation would be published.

Terms of reference of the group – paper 2

The Chair invited members to review the Terms of Reference (paper 2). Members reviewed this by section, and agreed various changes.

Action Point 4: officials to email those who couldn’t attend to ask for comments on the Terms of Reference. The Terms of Reference will be updated and shared with the CMO for approval, before circulating to members prior to the next meeting.

Local implementation leads

The Chair opened discussion on Local Implementation Leads, inviting comments.

It was agreed that this should be individuals at a local level, for example, within NHS structures. The group agreed that advice from the Health and Social Care Integration Policy team would be helpful.

Action point 5: officials to seek advice from Health and Social Care Integration policy lead on who might be best placed to nominate Local Leads.

The group discussed the need for Local Leads to be aware of alternative pathways for those who are not eligible through SRTI. This will include signposting for non-SRTI applications for Disability Assistance to Social Security Scotland and wider welfare support services. It was agreed that this would not be an “education” role but an “awareness raising” role. Members recognised the importance of the role given the complex nature of the social security landscape.

There was some discussion of training and support for practitioners, including how training materials might be commissioned, if necessary. The group discussed whether ‘another online module’ was needed as the Guidance itself should support the decision making process. It could therefore be counter-productive to create a training task for practitioners and increase workload unnecessarily. Members agreed to explore ease of access to the guidance, related documents (e.g. BASRiS form) and other materials e.g. easy read leaflet, to support practitioners.

Action point 6: officials to write up a note on Local Implementation Leads outlining their role and channels of communication.

Agree priorities for work of subgroups and outputs to bring to future meetings - Action log

The Chair noted the list of priorities currently proposed in the action log. The group agreed these as the establishment of Local Implementation Leads, easy read leaflet and FAQs (for practitioners, clients and those who support them) and input to practical issues concerning design of system, for example, accessing and return of the BASRiS form.

It was agreed that monitoring the use of the CMO Guidance and completed BASRiS forms will also be added to the Action Log. This will include working with analytical services to agree areas to be monitored.

Action point 7: officials to update Action Log

Action point 8: officials to begin developing FAQs. These will then be circulated with the group in October, inviting members to form a sub-group who will develop these prior to the next meeting.

Action point 9: officials to liaise with Social Security Scotland (Agency) regarding timescales for input from the group to develop the easy-read leaflet.

It was agreed that sub-groups of volunteer members would take forward the prioritised actions in smaller groups, and bring to the larger group for discussion.

Future dates

The Chair noted the date of next meeting was Thursday 7 November 2019 and opened discussion on dates for future meetings. Members noted that January was too close given the holiday break and agreed that February should be the first meeting in 2020.

AOB and close

Two issues were raised around the worked example in the guidance (Frank) and the way the guidance described consent (to share patients information with the Social Security Scotland) including keeping a note of this in patient’s medical records. Clarification of the underpinning GDPR legislation was requested.

There was also some discussion around “backdating”.

Action point 10: officials to update the worked example and develop an FAQ to support clinicians with clarity on consent and medical records.

Action point 11: officials to circulate advice from information governance for health and care policy regarding the enabling sections of the GDPR legislation.

Action point 12: officials to clarify policy on “backdating” and “retrospective application”.

The Chair thanked members for their attendance and contribution and closed the meeting.