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

Attendees and apologies

• Param Bhattathiri, Consultant Neurosurgeon & Department Chairman – Chair

• Suzie Gilkison, Senior Policy Officer, Scottish Government

• Shonagh Martin, Policy Officer, Scottish Government

• Angela Munro, Administrative Assistant, Scottish Government

• Ben Boyd, Head of Operations, Health and Social Care, Social Security Scotland

• Christopher Walsh, National Strategic Stakeholder Engagement Senior Manager, Social Security Scotland

• Emma Burns, External Communications Manager, Social Security Scotland

• Erik Firth, Senior Business Owner, Social Security Scotland

• Flora Watson, Scottish Strategic Nursing Leads for Palliative Care, NHS Grampian – Vice Chair

• Kayleigh Sharpe, Business Owner, Social Security Scotland

• Lisa Lennon, Business Owner, Social Security Scotland

• Lynda Totten, Operational Policy Lead, Social Security Scotland

• Margaret Greer, Strategic Partnership Manager, Macmillan

• Michelle Gallagher, Senior External Communications Manager, Social Security Scotland

• Padmini Mishra, Senior Medical Officer, Scottish Government

• Peter Maclean, Service Manager for Primary Care Contracts, NHS Grampian

• Thomas Mulvey, Policy and Public Affairs Manager, Marie Curie Scotland

• Stefania Pagani, Senior Research Officer, Scottish Government

Apologies

• Annabel Howell, Consultant Paediatrician, NHS Tayside, and Medical Director CHAS
• Donna O’Boyle, Scottish Government
• Ellie Wagstaff, Senior Policy Manager, Marie Curie Scotland
• Helen Malo, Policy and Advocacy Manager, Hospice UK
• Kirsty MacIver, NHS Scotland
• Mark Hazelwood, Chief Executive, Scottish Partnership for Palliative care
• Richard Gass, Welfare Rights and Money Advice Team (Glasgow City Council)
• Stephen Wilson, Health Board Clinical Lead for Realistic Medicine
• Susan Webster, Head of Policy and Campaigns, MND Scotland
• Teresa Cannavina, Scottish GP Committee
• Tracey Crickett, NHS Scotland

Items and actions

Welcome and introductions

The Chair welcomed members to the 18th meeting of the National Implementation Group for Terminal Illness (NIG).

Update on actions from the last meeting

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

Action 1: Angela Munro to send email to members requesting feedback by Friday 13 September on the two-way email process and the 10 day response time. Officials to collate responses and send to Lynda Totten. Nil responses will be considered as approval.

This action was completed, and Social Security Scotland officials will provide an update on the SAE later in the meeting.

Action 2: Officials to work with the stats team to find out more about applications coming in through the normal rules route instead of the faster SRTI route.

A stats release published on Tuesday 12 November has been shared with the meeting papers.

The Chair highlighted that some health conditions, such as cancer, are broken down into different categories. The paper does not represent the breakdown of SRTI and normal rules applications under each category of condition. Additionally, the breakdown of SRTI and normal rules Adult Disability Payment (ADP) applications for each health board could be broken down further.

Social Security Scotland officials directed members to the Adult Disability Payment high level statistics which show the breakdown of applications per Local Authority area and indicate that the health categories are based on ICD-10 coding.

Action 3: Officials to draft a letter to Social Security Scotland expressing the group’s strong feeling about the need for a permanent email solution.

This letter has been shared as part of the meeting papers.

Officials asked members to email the secretariat should they want their name removed as signatories from Annex A. Nil responses will be taken as agreement to have their names on the letter.

Action 4: Officials to enquire with the Department for Work and Pensions (DWP) about the digital routes for requesting an SR1 form.

Officials raised this with DWP colleagues who were grateful that this issue had been brought to their attention. They confirmed that currently they do not have a specific timescale in which they will respond to requests for an SR1 form, however this is something they are now looking into.

DWP also shared the list of accepted and secure email addresses that can be used to request an electronic SR1 form via email. If there are any further issues requesting forms in the future and one of the secure email addresses listed below has been used for the request, members are encouraged to get in touch with officials and it will be raised again.

Secure email addresses to request an SR1 form can be sent to members directly.

Agency updates

Erik Firth, Senior Business Owner in Social Security Scotland provided an Agency update.

At the last meeting, members asked about the rationale behind not using SCI Gateway. Social Security Scotland officials explained that this was because NHS colleagues informed them that not all hospitals had access to SCI gateway.

Social Security Scotland officials informed the group that Social Security Scotland are receiving BASRiS forms as part of the document upload facility for online applications. This is contrary to service design and there is a risk these BASRiS forms aren’t instantly identified as SRTI in order to be prioritised. When received via the agreed routes, mail, Webform and Editable PDF, BASRiS forms are automatically identified as a priority document, and a task is set to the relevant priority SRTI work queues. However, the document upload facility does not have the capability to identify BASRiS forms, therefore they are attached to a client’s record and a general task is created within a Business As Usual work queue rather than an SRTI priority work queue for action. Officials said the CMO guidance provided clarity on this and information is available on the corporate hub (Guidance Library for SRTI).

Social Security Scotland officials informed members that a “contact us” tile on their website has been developed which can be used for requesting a stock of paper BASRiS forms.

The launch of Scottish Adult Disability Living Allowance (SADLA) in March 2025 was also highlighted. This will be a closed benefit with no new applications and has a very small cohort of 66,000 clients. Officials from the relevant team will attend the next meeting to update on this and further information can be found at Scottish Adult Disability Living Allowance planned.

Social Security Scotland officials confirmed that they would be sending out appropriate communications in the usual way to stakeholders and clinicians to show what the end to end journey would look like for individuals being transferred to SADLA.

Social Security Scotland officials updated that the SRTI process is now transitioning from Programme to Agency. Agency colleagues are updating their process maps and guidance. Business Owners Lisa Lennon and Kayleigh Sharpe are leading for Social Security Scotland. They will be fully responsible for Special Rules for Terminal Illness and continuous improvement in this area from 3 December 2024.

Due to this transition, discussions are also being held on the future of the National Implementation Group for Terminal Illness (NIG). Since its inception, the purpose of the group has evolved, with meetings now focusing less on policy and more on operational items. As next year will see the second pilot and then national rollout of Pension Age Disability Payment (PADP), as well as the introduction of SADLA, it was suggested that one further meeting will be held in February/March 2025. After this, it was suggested that the group move to ad hoc meetings.

Social Security Scotland officials highlighted that they are currently working to improve stakeholder engagement therefore they are keen to continue regular stakeholder meetings. Social Security Scotland are improving their wider engagement strategy, which will include this group. Over the next few months, internal meetings will take place to further consider the future of this group and its purpose.

SRTI evaluation

Stefania Pagani, Senior Research Officer in the Scottish Government, provided an update on the progress of the SRTI evaluation.

Officials informed members that they have finalised the logic model and thanked members of the group who gave helpful feedback on this. The logic model outlines the policy principles that Scottish Government and Social Security Scotland officials have agreed to. These form the initial actions which determine the long term outcomes.

The commissioned work has been split into two parts:

• how clinicians are implementing the policy and whether it is being implemented as intended
• how clients and their representatives are experiencing the changes in policy

A contractor, KSO, has been chosen to lead the evaluation. A review of the minutes of previous NIG meetings has been carried out and will be used as a basis for the work.

To begin the research, the contractor intends to hold a focus group comprising clinicians, those who represent them and those who work closely with them to gain an understanding of clinicians’ experiences of the policy process. It is hoped these will take place in early to mid-December, however dates will be confirmed depending on availability. Officials requested NIG volunteers for this focus group.

The focus group will be a one-off commitment for members and will last around 90 minutes. Members will be contacted to give their availability, and the most popular date will be chosen to hold the focus group. There will be an option to take part in a short 30 minute interview instead if members are not available on this day.

Action 5: Officials to share the logic model with the group.

Scottish Administrative Exercise (SAE) for SRTI

Lynda Totten, Operational Policy Lead in Social Security Scotland, provided an update on progress of the Scottish Administrative Exercise (SAE).

Social Security Scotland have been using a two way e-mail process with Health Care Professionals to confirm the clinical judgement date for those cases identified in the SAE as requiring further review.

Officials thanked members of the group for their feedback which resulted in the following changes made to the two way email process:

• the initial timescale for responses from Health Care Professionals was changed from 10 working days to 14 working days
• officials agreed to use GP practice email addresses instead of individual GP email address to increase the chances of a response

Officials updated that:

• there have been 172 emails issued
• 15 reminder emails have been sent, but the team are still waiting on the first response for many
• no emails have required escalation
• 93 email responses have been received
• there has been a 54% success rate.
• 629 cases have been reviewed, 551 of which required no further action

Update on communciations for GPs

Michelle Gallacher, Senior External Communications Manager in Social Security Scotland, provided an update on communications for GPs.

Social Security Scotland officials informed that they are working on a one page fact sheet which outlines the BASRiS process in a simple way. This will be put on their website along with an end to end process flow chart. Once ready, members will be invited to review these and provide feedback.

The communications team is also developing social media content and is looking for more clinician contacts on social media channels. Social Security Scotland officials asked members to recommend some stakeholder organisations and groups that have links with clinicians. They have reached out to larger organisations such as the Royal College of General Practitioners (RCGP) and the British Medical Association (BMA).

The communications team at Social Security Scotland is also refocusing engagement around the SRTI process. The Health and Social Care team at Social Security Scotland is talking directly with healthcare professionals about this. Dates are in the diary to speak with Marie Curie nurses. This will be a continual focus for the team.

Members suggested contacting the Scottish Primary Care Cancer Group and The Scottish Cancer Coalition.

Peter Maclean, Service Manager for Primary Care Contracts, NHS Grampian, offered to contact Primary Care Leads and Management Leads to distribute communications.

Officials offered to send communications to the General Medical Council and suggested they talk to colleagues in the Scottish Government Primary Care Division. Officials informed that NHS Education Scotland have bereavement and palliative care resources.

It was suggested that content could be provided for educational events. Social Security Scotland are also offering to do a presentation with stakeholder groups and organisations as many still refer to DWP only on their websites.

Members were asked to email Michelle Gallacher with suggestions for other stakeholder groups and organisations to send communications to. Suggestions would be welcome before the next PADP pilot area launch in February 2025.

Agree priorities for future meetings

Priorities for next meeting:

• update on the future of the group
• SRTI evaluation update
• SAE update which should be complete by the next meeting. Resource has been extended until February 2025
• SADLA update
• PADP update
• Progress on communication for GPs with stakeholders
• highlights from Programme to Agency transition

Officials confirmed that the first PADP pilot area launch is going smoothly and there have already been some SRTI applications. All systems, guidance and training have been delivered successfully. It is too early to share any statistics, but there will be a release on 17 December 2024 to cover the PADP applications submitted from 21 October to the end of November 2024. PADP will be rolled out to an additional 13 local authority areas on 24 March 2025, ahead of the national launch across Scotland on 22 April 2025.

Action 6: Officials to arrange the next meeting date in February/March 2025.

Any other business and close

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