National Implementation Group for Terminal Illness meeting minutes: 5 February 2020

Attendees and apologies

• Dr Linda de Caestecker
• Dr Jenny Bennison
• Sandra Campbell – via Teleconference
• Dr Pat Carragher
• Dr Teresa Cannavina
• Mark Hazelwood
• Richard Meade
• Susan Webster
• Helen Malo
• Rod Finan
• Richard Gass
• Dr Mini Mishra
• Meg Sydney
• Margaret Grigor
• Adam Milne
• Shonagh Martin
• Jo McKay
• Wendy Rizza
• Scott Tumilty
• Jen Campbell
• Sam Ernestzen
• Selina Kerr

Apologies

• Donna O’Boyle
• Claire McDermott
• Iain Macritchie
• Claire Pullar

Items and actions

Welcome

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

Update on actions from last meeting

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

The group sought an update on the timescales of the Scottish replacement for the Disability Living Allowance for Children. The replacement benefit was confirmed as due to be introduced in summer 2020.

Officials provided an update to the group on specialist nurses, confirming that the Cabinet Secretary for Social Security and Older People has committed to including specialist nurses in legislation as able to make a clinical judgement of terminal illness and consequently complete BASRiS forms. The policy has been developed using feedback gained at a workshop Scottish Government held in November.

It is proposed that:

• specialist nurses currently able to complete DS1500 will be enabled to complete BASRiS
• specific inclusion of grades/titles of nurses are to be avoided in order to ‘future proof’ regulatory changes

It is proposed that this is to be achieved by:

• inclusion of ‘registered nurse’ (RN) in legislation as an addition to registered medical practitioner (RMP)
• inclusion of a set of 5 criteria in guidance which will apply to both RMPs and RNs

The 5 criteria are:

The Registered Medical Practitioner or Registered Nurse:

• 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

Scottish Government are working to find a legal solution that will allow us to have this in place prior to Disability Assistance for Children and Young People (DACYP) launching this summer.

The group welcomed the update on specialist nurses.

Dissemination and communication plan

The group discussed the current Dissemination and Communication Plan, with officials noting that; having materials ready in May to be published in June would fit into the current planned timeline; a continuous improvement model would be used so that the FAQ’s are updated responding to the issues and the frequency of queries that are raised; and, stressed the importance of tying in NIG’s communication plan with that of Social Security Scotland’s.

The discussion then moved on to contacts, individuals and networks that could help disseminate the information to all practitioners, third sector organisations and supporting services:

Andrew Wilkie (Head of Corporate Communications, Health Directorate, SG) can possibly help with dissemination routes within NHS Boards and Health and Social Care Partnerships (HSCP).

Reference was also made to the NHS Conference in June 2020 – suggestion of exploring Social Security Scotland having a presence, for example in exhibition hall.

The following additional organisations were suggested:

Organisation / network	Point of contact with NIG	Potential to further disseminate an update.
Hospices– existing communications channels can be used	Helen Malo
Paediatric End of Life Care Network (PELiCaN)	Pat Carragher
Children’s Commission Groups	Pat Carragher
Health and Social Care Alliance
Royal College of Nursing	Sandra Campbell	Members groups and bulletins
Senior Nursing Palliative Care routes	Sandra Campbell
Association of Palliative Care Social Workers
Scottish Partnership for Palliative Care	Mark Hazelwood	Possibly include an update in monthly bulletin
Network of related third sector organisations (?)	Mark Hazelwood
British Medical Journal BMJ		News bulletin
BJGP Journal		Possible place to include an update
Welfare advisors – using existing communications channels	Richard Gass

The group agreed on the importance of avoiding duplication and identified cross-posting as a potential risk connected to the Dissemination and Communication Plan.

The group also discussed the types of support available to clinicians e.g. Social Security Scotland (SSS) Freephone helpline and CMO guidance queries. The following distinction was made; the Freephone helpline can provide advice on general queries clinicians may have with regards to the process / new system; there will also be a clinical helpline where Social Security Scotland’s clinical advisers can provide help regarding the application and use of the CMO Guidance. If a clinician has a query regarding a specific patient, Social Security Scotland cannot discuss this but they can recommend the clinician contacts the CMO office who will be able to provide additional support in complex cases. However, none of these forms of support can provide advice to clinicians on decisions to be made; the decision remains the responsibility of the clinician.

It was agreed that a new member would be added to the Communication Sub-group and Andrew Wilkie’s help with dissemination routes would be requested. Moreover, Social Security Scotland would take the lead on the wider communications plan.

Action point 1: members to provide links to local health boards via Scottish Executive Nursing Directors

Action point 2: children Commissioner’s Group – links to be provided by members

Action point 3: members to send contact details of Andrew Wilkie. Officials to contact Andrew Wilkie and understand dissemination routes via Health Boards and HSCP.

Action point 4: officials to contact representatives in Social Security Scotland regarding their wider plans for stakeholder communications for example roadshows.

Easy read leaflet - content

The current content of the leaflet was discussed by the group raising a number of issues, such as, the need for separate versions of the leaflet for clinicians and stakeholders, with members of the group raising concerns that this may cause some confusion. It was felt that the current link to the FAQ’s is not appropriate for clients and that a link to the website could be used instead. It was also felt that it will be important to highlight that some social security benefits will still be reserved. Furthermore, signposting to advice and advocacy services would be desirable.

The group discussed the possibility of adding in the right of individuals to a second medical opinion. It was suggested that General Medical Council wording could be adapted and potentially used.

Action point 5: subgroup to provide draft of the leaflet for the members to discuss at the next NIG meeting

Frequently asked questions

The use of the word frailty was discussed by the group in relation to its legal definition. Its current use in the FAQ’s has been advised as being not specific enough to satisfy the legislative requirements e.g. legislation currently requires the individual to have a progressive disease causing the terminal illness and frailty is currently considered to be a condition and not a disease. So in order for frailty to be included, it needs to be referred to as having one or more diseases which lead to frailty.

Action Point 6: Officials to send updated version of FAQs to members allowing time, prior to next meeting, for all members to make any final suggestions to these. With the exception of answering practical service design questions the content of FAQ document to be finalised at next meeting.

Digital solutions for BASRiS

Officials provided an update to the group on their work stating that user-centred design was being used throughout the process. Input from the group was requested as to who could be targeted for this user research. It was confirmed that no single digital solution is currently favoured and that the user research will inform what digital solution is used.

Agree priorities for future meetings

• finalised FAQ’s (with exception of practical service design questions)
• leaflet – draft of content to be ready for discussion at next meeting
• next steps of Dissemination/Communication plan
• alignment of NIG’s communications plan with SSS communications plan
• proposals re Audit of implementation of new terminal illness definition and CMO guidance including child applications
• finalising the content of the BASRiS form regarding consent of children

Action point 7: officials to request by email questions members may suggest regarding the audit of CMO guidance and what data can be accessed in the coming months This communication to be done via email and collated prior to the next meeting.

Future dates

Date of next meeting is Tuesday 21 April (10:00 – 12:00)

Date to be agreed for future meeting around the end of May.

AOB and close

Fee for completion of BASRiS form was briefly discussed. It was explained that when GPs claim the fee (currently for completion of DS1500) this is due to the way GP practices are funded. The distinction being that it is not a payment for doctors which nurses are unable to claim; clarity on this was welcomed.