National Implementation Group on Terminal Illness for Disability Assistance meeting minutes: Aug 2024

Attendees and apologies

• Param Bhattathiri, Consultant Neurosurgeon & Department Chairman – Chair
• Suzie Gilkison, Senior Policy Officer, Scottish Government
• Christopher Walsh, National Strategic Stakeholder Engagement Senior Manager, Social Security Scotland
• Ellie Wagstaff, Policy and Public Affairs Manager, Marie Curie Scotland
• Erik Firth, Senior Business Owner, Social Security Scotland
• Lynda Totten, Operational Policy Lead, Social Security Scotland
• Margaret Greer, Strategic Partnership Manager, Macmillan
• Padmini Mishra, Senior Medical Officer, Scottish Government
• Peter Bell, Policy Manager, Scottish Government
• Peter Maclean, Service Manager for Primary Care Contracts, NHS Grampian 
• Kirsty MacIver, NHS Scotland
• Richard Gass, Welfare Rights and Money Advice Team (Glasgow City Council)
• Siobhan Toner, Operational Policy Team Leader, Social Security Scotland
• Shelley Smith, Policy Officer, Scottish Government
• Stephen Wilson, Health board Clinical Lead for Realistic Medicine 
• Susan Webster, Head of Policy and Campaigns, MND Scotland
• Teresa Cannavina, Scottish GP Committee
• Oonagh Fraser, Principal Research Officer, Scottish Government 

Apologies 

• Annabel Howell, Consultant Paediatrician, NHS Tayside, and Medical Director CHAS
• Donna O’Boyle, Scottish Government
• Flora Watson, Scottish Strategic Nursing Leads for Palliative Care, NHS Grampian – Vice Chair
• Helen Malo, Policy and Advocacy Manager, Hospice UK
• Mark Hazelwood, Chief Executive, Scottish Partnership for Palliative care 
• Rod Finan, Professional Social Work Advisor for Children’s Services, Scottish Government
• Shonagh Martin, Policy Officer, Scottish Government
• Thomas Mulvey, Policy and Public Affairs Manager, Marie Curie Scotland
• Tracey Crickett, NHS Scotland
• Paul Knight, Chief Medical Advisor and Caldicott Guardian, Social Security Scotland
   

Items and actions

Welcome and introductions

The Chair welcomed members to the 17th meeting of the National Implementation Group on Terminal Illness (NIG). 

Update on actions from last meeting

Officials provided an update on the actions from the previous meeting.

Action 1: Members to re-circulate the Slido questionnaire and inform their networks about the extended deadline to 7 June 2024.

An update on the Slido results was presented later in the meeting. 

Action 2: Teresa to confirm which Department of Work and Pensions (DWP) benefits SCI Gateway is used for and to inform the group.

Teresa confirmed via email and at the meeting that information requests for Adult Disability Payment are received through SCI Gateway. 

Action 3: Officials to work with the stats team to find out more about applications coming in through the normal rules route instead of the faster Special Rules for Terminal Illness (SRTI) route. 

The statistics team from Social Security Scotland has confirmed it is preparing a briefing paper to update on the following:

• which health conditions, besides cancer, are most commonly recorded on applications coming through the normal rules route
• the number of applications coming through the normal rules route for each health board area 

Members suggested that the only time that clients apply via the normal route is when they haven’t yet been diagnosed as terminally ill, therefore this could have led to some applications being delayed. On discussion with Social Security Scotland colleagues, they have a process to quickly transfer clients to the SRTI route once they have been diagnosed as terminally ill.  

New action 1: Officials to ask if there would be an update on the statistics paper in time for the next meeting in November. Officials to ask if there will be permission for members to share this paper with their wider networks.  

Action 4: Officials to draft a letter to Social Security Scotland expressing the group’s strong feeling about the need for a permanent email solution.

Suzie and Dr Mishra have drafted the letter to Social Security Scotland. When the letter is ready, it will be circulated to members who must each respond in writing if they agree with it. Names of members who have signed off on the letter will be added to an Annex at the end. Those who have not signed off on the letter will not have their names added to the Annex.

New action 2: Officials to circulate the letter once cleared. Members to read and respond to the letter with their agreement by email.    

Action 5: Officials to inquire with DWP about the digital routes for requesting an SR1 form. 

Shonagh Martin has made inquiries with DWP and is awaiting a response. 

New action 3: Officials to provide an update at the next meeting regarding progress of communications with DWP on the digital routes for requesting an SR1 form. 

SRTI Evaluation

Oonagh Fraser, Principal Research Officer in the Scottish Government, provided an update on the progress of the SRTI evaluation.

Officials informed that they have finalised the logic model and thanked members of the group for their helpful feedback on this. Oonagh shared contact details with members and will circulate the logic model upon request. 

Officials have discussed the ethical issues surrounding the research with Department for Work and Pensions (DWP) colleagues and are in the process of completing Scottish Government ethical procedures. 

Officials use as much existing data as they have access to in policy evaluations, and are working with Social Security Scotland colleagues to add an SRTI question to the client survey enabling them to collect data on this in future. This survey is sent to all applicants of Adult Disability Payment.

Officials informed that they hope to send out the Invitation to Tender very soon, subject to budget approval. 

Oonagh invited members to volunteer to be a participant of the SRTI Evaluation Research Advisory Group. Officials are looking for members who have experience with research as they are looking for feedback on the research approach, data collection tools, and outputs, rather than on the SRTI process, though any members are welcome to join. 

Members can contact Oonagh Fraser directly if they would like to volunteer feedback on the research approach.

Ellie Wagstaff, Marie Curie Scotland, requested to see the logic model and offered to volunteer for the research advisory group. Margaret Greer, Macmillan, and Erik Firth also agreed to support with the research advisory group.

Slido Questionnaire Results

Christopher Walsh, National Partnership Development Lead in Social Security Scotland, gave members an overview of the BASRiS messaging for clinicians in Scotland Slido survey results and outlined the next steps that will be taken. 

Social Security Scotland officials informed that there were 73 responses to the survey and thanked members for sharing with their networks.

The key results from the survey were:

• 47% were aware of the recent re-publication (December 2023) of the Chief Medical Officer's (CMO) guidance for clinicians completing a BASRiS form.
• 63% were either fully aware or aware of the BASRiS processes and what is expected of them. 
• 22% were not sure what is expected of them
• 15% had no knowledge at all of BASRiS
• there is a requirement for more communications and engagement to ensure that all clinicians are aware of the BASRiS process

The preferred methods of finding information about the BASRiS form and processes included:

• 45% said their preference was through factsheets 
• 30% from the CMO guidance
• 19% from infographics 
• 13% from process maps
• 8% from video resources
• others preferred it to be in a central, accessible location to be easily found  

Social Security Scotland officials discussed approaches to ensure messaging for clinicians is received. Suggestions included:

• targeted awareness campaigns which will include input from Social Security Scotland clinical staff
• segmented outreach to reach clinicians who were not sure what is expected of them or had no knowledge at all of BASRiS
• tailoring communications to different levels of awareness
• using clearer messaging materials

Social Security Scotland officials informed that they are looking at using existing channels to provide updates to clinicians. Some of these include: 

• providing a one-page end to end process map infographic and make it accessible online
• using social media to deliver messages 
• putting information in medical publications. Communications officials will be able to give details on which publications 
• face to face engagement 

Members asked how these channels will be kept up to date. Social Security Scotland officials suggested that links can be provided on the Social Security Scotland website for clinicians. 

Members suggested that information could be held centrally and accessed via a QR code. This would allow for a ‘self-serve approach’ and avoid too much email traffic. Social Security Scotland officials agreed that this would be an easy way to contain and/or change information and keep it up to date.  

Members asked why updates could not be given via SCI Gateway. Social Security Scotland officials informed that BASRiS information is not delivered via SCI Gateway and that this was discounted at the early stages of development for a number of reasons. The Social Security Scotland Act allows for GPs to share information with Social Security Scotland but not the other way around.

The use of posters in practices was discussed. Members asked whether patients or clinicians were being targeted with posters and asked if there would be an expectation that practices would cover any of the cost of printing. Officials informed that the information would be targeted at clinicians and that there would be no expectation for practices to cover any costs. 

Members informed that people tend to look at information as and when it is needed, and it would be useful to update health board intranets with information to raise awareness. It was suggested that the infographic could be sent to NHS Inform. 

Members asked how these channels will be kept up to date. Social Security Scotland officials suggested that links can be provided on the Social Security Scotland website for clinicians. 

Members suggested that information could be held centrally and accessed via a QR code. This would allow for a ‘self-serve approach’ and avoid too much email traffic. Social Security Scotland officials agreed that this would be an easy way to contain and/or change information and keep it up to date.  

Members suggested that it could be included in their Emergency Care Summary (ECS) but that would be reliant on primary care being aware of the patient being on disability benefits and having the time to update the ECS. This may only benefit secondary care providers.

Members said that they would expect a patient to be aware of being on disability benefits and, in SRTI cases, a BASRiS form would need to be signed and sent off. There is a data sharing portal which may be used for this.

Action 1: Erik Firth to discuss SCI Gateway with colleagues in Social Security Scotland to determine why it was discounted for sending BASRiS information at the early stages of development. Officials to feed this back to members.

Scottish Administrative Exercise (SAE) for SRTI

Siobhan Toner, Operational Policy Team Leader in Social Security Scotland, provided an overview of the Scottish Administrative Exercise (SAE) for SRTI and proposed use of the two-way e-mail process. 

Social Security Scotland officials informed that the ‘original’ BASRiS form required only the date the clinician completed and signed the form. Once it became clear the BASRiS was not always signed on the same day a patient was diagnosed as terminally ill, changes were quickly made to the BASRiS form in December 2022. The BASRiS form now asks clinicians to explicitly record the date of terminal illness diagnosis (the ‘clinical judgement’). The clinical judgement needs to be confirmed for some clients who had the original BASRiS to support their applications. This will ensure these clients receive the full disability benefits they are entitled to.

Social Security Scotland would like to use a two way e-mail process with Health Care Providers to confirm the clinical judgement for those cases identified in the Scottish Administrative Exercise as requiring further review. This will ensure that clients have been paid from the correct date. 

An initial sift was carried out and revealed that approximately 264 clients applied for disability benefits with an original BASRiS. This will mean a maximum of 264 emails needing to be sent to clients’ clinicians for confirmation of the clinical judgement held on record by Social Security Scotland. 

The Community Health Index Management Board has approved the use of the client’s Community Health Index (CHI) number within the outgoing e-mail to clinicians on the ‘allow list’ of approved email addresses. The CHI number will allow the clinician to identify their patient. No other personal information will be included ensuring that only minimal personal identifiable data will be transmitted across the e-mail exchange.

Social Security Scotland officials have proposed a 10 working day response time for clinicians to respond to the email and email reminder and provide confirmation of the date of clinical judgement. Feedback on the email process and the proposed 10 working day response time was requested from members. 

Members informed that it was positive that an email process was being discussed as an alternative to phone calls. Members asked what email address will be used and suggested the email may not be picked up at clinicians’ personal email addresses. Members also suggested that the 10 day response time may result in the email not being picked up in time due to annual leave.

Officials informed that emails will be sent to addresses on the ‘allow list’. These NHS email addresses have already been approved for use. Officials assured that there is a rigorous process for checking emails leaving Social Security Scotland.

Members suggested the email addresses on the allow list may have to be updated as several practice addresses in some areas have changed. Social Security Scotland officials informed that the list is updated regularly, and Social Security Scotland often receives requests to be added to the list. 

Members suggested that the allow list may be restricted to health boards. The list has been extended to the third sector as they often have clinicians who support service users.

Social Security Scotland officials asked whether there is someone else that they should contact to approve the use of these email addresses. 

Members stated that, if the allow list is ‘tied’ to health boards, email responses from clinicians would only reach Social Security Scotland if coming from the specific allow list address that the email request had been sent to. This would mean that others cannot respond to the email from another email address.  

Social Security Scotland officials informed that the allow list approves the domain name of email addresses. For example, any emails sent by clinicians with the @nhs.scot domain name will be received by Social Security Scotland as this domain name is on the allow list. The allow list is used for GPs to submit an editable PDF BASRiS form to Social Security Scotland. Members suggested that if an email is sent to anyone with an @nhs.scot then it could broaden the potential audience in receipt of the email if any are sent in error.

Members made the following points:

• members asked why there is a need to write to a clinician specifically and not to the GP practice when the clinical judgement date is on their systems
• the process may mean that GPs receive these emails and would have to answer all queries on behalf of the clinician who made the clinical judgement 
• members requested that the mortality register is checked before the email is sent out to clinicians
• members requested to see the content of the email to be sent out

Social Security Scotland officials clarified that the email will be sent to the practice/organisation of the clinician named by the applicant, that is, the address the BASRiS originated from. Anyone who receives the email and has access to the patient’s records can return the date of clinical judgement to Social Security Scotland.

Officials clarified that the email content is in Annex A of the paper sent to the group on 22 August 2024, before the meeting.

Members requested a flowchart to outline the process. Social Security Scotland officials informed that all information on the process is outlined in the paper and clarified that the email process has been devised only for the duration of the Scottish Administrative Exercise and for the purpose of confirming the date of clinical judgement recorded on some original BASRiS forms. 

Social Security Scotland officials informed that this process was developed in response to feedback from clinicians that responding to telephone calls can be challenging therefore is a positive step forward and may need minor adjustments. Members agreed this was a welcome change from telephone calls to GPs. Social Security Scotland officials stressed that the two way email process has only been agreed for this particular Scottish Administrative Exercise as it has a limited number of clients and a limited timescale. This two way email process will not be adopted for all Business As Usual BASRiS requests.

Officials asked the group if they would like some time to consider the process. The Chair suggested that the group send feedback on the two way email process for confirming the date of clinical judgement and on the 10 working day response timescale for the initial and reminder email. 

Action 2: Officials to send email to members requesting feedback by Friday 13th September on the two-way email process and on the 10 working days response time. Officials to collate responses and send to Lynda Totten, Social Security Scotland. Nil responses will be considered as approval.  

Social Security Scotland officials clarified that the paper detailing the process can be shared with members’ networks.     

Pension Age Disability Payment (PADP) communications

Suzie provided an update on the communications that will be shared ahead of the launch of Pension Age Disability Payment (PADP). A general release will be published on the gov.scot website with separate communications about PADP under the Special Rules for Terminal Illness being disseminated afterwards to the same channels and networks used when information was circulated regarding the re-publication of the CMO Guidance in December 2023.

The first PADP pilot will begin on 21 October 2024 as it launches in Argyll & Bute, The Highlands, Aberdeen City, Orkney and Shetland. 

The second pilot will launch on 23 March 2025 with national launch planned for 22 April 2025. Case transfer will begin in early 2025.

Stakeholder events will be held on 19 and 24 September 2024 and on 2 and 16 October 2024. Invites have been sent out for these, but members can contact Christopher Walsh if they wish to attend on a specific date even if the events are sold out.

Agree priorities for future meetings

Priorities for next meeting were to:

• update on the SAE 
• update on the SRTI Evaluation 
• update on the launch of PADP 

Action 3: Officials to arrange the next meeting date in November. 

Any other business and close

The group had no other business to discuss. The Chair thanked members for attending and closed the meeting.