National Implementation Group on Terminal Illness for Disability Assistance minutes: March 2025

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
• Beth Stanners, Senior Policy Officer, Scottish Government
• Campbell Haddow, Senior Practitioner, Social Security Scotland
• Ellie Wagstaff, Senior Policy Manager, Marie Curie Scotland
• Emma Burns, External Communications Manager, Client
• Erik Firth, Senior Business Owner, Social Security Scotland
• Flora Watson, Scottish Strategic Nursing Leads for Palliative Care, NHS Grampian – Vice Chair
• 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
• Richard Gass, Welfare Rights and Money Advice Team (Glasgow City Council)
• Sara Rooney, Service Manager (Business Owner for SRTI), Social Security Scotland
• Stefania Pagani, Senior Research Officer, Scottish Government
• William Finlay, Associate Chief Medical Officer, Scottish Government

Apologies 

• Annabel Howell, Consultant Paediatrician, NHS Tayside, and Medical Director CHAS
• Ben Boyd, Head of Client Services, Social Security Scotland
• Donna O’Boyle, Scottish Government
• Helen Malo, Policy and Advocacy Manager, Hospice UK
• Kirsty MacIver, NHS Scotland
• Mark Hazelwood, Chief Executive, Scottish Partnership for Palliative care
• Peter Maclean, Service Manager for Primary Care Contracts, NHS Grampian  
• Stephen Wilson, Health board Clinical Lead for Realistic Medicine 
• Susan Webster, Head of Policy and Campaigns, MND Scotland
• Teresa Cannavina, Scottish GP Committee
• Thomas Mulvey, Policy and Public Affairs Manager, Marie Curie Scotland
• Tracey Crickett, NHS Scotland

Items and actions

Welcome and introductions

The Chair welcomed members to the 19th meeting of the National Implementation Group for Terminal Illness (NIG). 

The minutes were formally approved. 

Update on actions from last meeting

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

Action 1: Members to contact the Senior Research Officer from Scottish Government by email if they wish to volunteer with the Special Rules for Terminal Illness (SRTI) evaluation focus group.

Emails were sent on 20 January 2025 and 19 February 2025. 

Action 2: Officials to share the SRTI evaluation logic model with the group.

This was circulated on 18 December 2024. 

Harmful Information 

The Senior Practitioner from Social Security Scotland gave an update on harmful information.

Social Security Scotland officials informed members that some Adult Disability Payment (ADP) BASRiS forms from a sample of cases indicated harmful information, that is, information about a terminal illness diagnosis that a healthcare professional has withheld from their patient. Many clinicians ticked the box to indicate this on the BASRiS form but do not elaborate on the reasons for this. 

This determines the kind of letter Social Security Scotland will send out to individuals about their award. This number of BASRiS forms indicating harmful information has been withheld was higher than expected, and officials are looking into the reasons behind this. Social Security Scotland are carrying out external engagement sessions to promote the submission of BASRiS in Scotland. This is to ensure that the client’s case is managed in a timely manner and to engage in education of what BASRiS is and the differences between this and DS1500. They will be welcoming questions & queries around terminal illness claims and the external Health Care Practitioner requirements of filling in the form.

The Social Security Programme team advised that when a follow-up letter is sent to the clinician after 12 weeks asking if their patient now knows about their terminal condition, the response rate is extremely poor. 

Members and officials then had a discussion about the reasons for this, and what could be done to increase the number of forms being properly and fully completed. 

Members asked whether officials could prevent the submission of a BASRiS form if any of the ‘harmful information’ boxes were left blank, however it was confirmed that, due to the format in which BASRiS forms are submitted, there is no way to do this at present. 

Members suggested that a generic letter, which doesn’t specify that the application is under Special Rules, could be sent to individuals when harmful information is not specified. Officials confirmed that this is what they currently do. They then contact the applicant’s named clinician to request any missing information.  

Some members highlighted that clinicians’ administrative support can assist in completing BASRiS forms, however other members pointed out that the clinician has responsibility for checking over the form and ensuring it is complete before it is sent to Social Security Scotland. Officials confirmed that if there is missing information or they have sent in a Department for Work and Pensions (DWP) version of the form, they call the clinician to complete it or send in the correct form. 

Members made the following suggestions to resolve:

• Auto populating forms with a final clinician check
• Link on the webpage to indicate what information is needed for harmful information
• A ‘tip on a PDF form reminding clinicians to complete the harmful information section
• Looking at geographical information of healthcare services to identify trends 
• Returning the form to the clinician if incomplete

Officials agreed to look into some of these suggestions. 

The Social Security Scotland External Communications team agreed to create bespoke leaflets and information online as needed. Social Security Scotland colleagues will also be engaging with GP surgeries, and information will be included in communications surrounding the Pension Age Disability Payment (PADP) rollout in April and the Scottish Adult Disability Living Allowance rollout. Members offered to include them in Macmillan education sessions.

Officials asked if members could spread awareness that the harmful information section of the BASRiS should be completed in full, with reasons given where any harmful information was being withheld from the patient. 

Action 1: Communications officials to research adding a PDF ‘tip’ on the electronic BASRiS. 

Agency Updates

The Business Owner for SRTI from Social Security Scotland updated on Agency activities. 

Transition of SRTI process from Programme to Agency

SRTI has now transitioned from Scottish Government Programme to Social Security Scotland and has a Business Owner for SRTI. 

Email trial 

Social Security Scotland officials confirmed that the trial to use email for contacting clinicians was very effective and the response rate was high. Management information highlighted that the response rate from telephone contact was also high. They will now prioritise email as a method of contacting clinicians to run a second trial but there will still be a phone call, made on the fourth day, if there is no response. This will ensure they keep to their commitment to process SRTI applications within seven working days. To do this, Social Security Scotland require an application and a completed BASRiS.   

The second trial will run from April to September 2025 and will then be reviewed with findings communicated to the group. 

Members were happy that the previous email trial had been successful. They suggested that during a phone call information can be missed, due to, for example, accents or mishearing information. In an email, information exchange is more accurate. Members asked if another trial is required since communication by email has already been shown to be effective (during the first trial). 

Social Security Scotland officials informed members that during their first trial they did not use email as the first method of communication. Officials will be reviewing the trial as it is being undertaken to quickly determine whether it is working. This is different from the previous trial where the review was conducted when the trial was complete. They agreed that, if it is overwhelmingly successful, they could report this in their early findings to the Chief Executive of Social Security Scotland. 

Update on the SRTI Evaluation

The Senior Research Officer from Scottish Government, gave an update on the SRTI Evaluation. 

The research is currently at the fieldwork stage. The research plan has changed as there was difficulty in recruiting clients who have applied via Special Rules. To address this, the contractors are now looking at approaching support organisations and people who support families who have applied via Special Rules. 

The research team are almost halfway through their target number of interviews. They have extended this aspect of the fieldwork to the end of April 2025 to allow more time to recruit research participants. 

Officials thanked members of the group for putting them in touch with organisations and sending information to their networks. 

There are some gaps in the emerging findings. They are particularly looking for connections to individuals who have applied for Child Disability Payment (CDP) and Pension Age Disability Payment (PADP) as the research has been focussed on ADP so far. There is also a need to gather more experiences from tertiary and community clinicians. 

Members asked if clinicians would be quicker to send an email directly to the research team outlining any difficulties they have had with the Special Rules/BASRiS processes. Officials explained that researchers need to put the same questions to everyone for consistency. The survey should only take around five or ten minutes to complete which would be around the same amount of time it would take to draft an email. 

Officials informed that the next pilot areas for PADP will go live on 24 March 2025 therefore there will be a higher number of people from this cohort who could be contacted for the research. 

Officials asked members if they could keep sharing the survey link and the interview details with their contacts. Officials also asked if NIG members could put the research team in touch with individuals who have relevant experience, clinicians and/or support workers (depending on their roles) to take part in interviews. 

Action 2: NIG secretariat to send members details of the new approach to the research along with the survey link and interview details. Members to share with their networks and relevant people. 

Update on the Scottish Administrative Exercise (SAE)

The Operational Policy Lead from Social Security Scotland, gave an update on progress of the SAE. 

This SAE is now complete, and the process was a success.  

Social Security Scotland officials sent a total of 260 emails.176 responses were received within eight calendar days (target 14 working days), requiring no reminder. 84 reminders were required to be issued. They received a total of 249 responses, a 96 per cent success rate. The average number of days to respond was 17 calendar days. There were no follow up questions or queries from clinicians upon receiving the email request from Social Security Scotland. The next step is to go over the lessons learned. Officials are sending a submission to the Cabinet Secretary for Social Justice on how many manual payment issues occurred and the error rate. 

Members asked if they will be describing the two way email process in their submission. Officials confirmed that they will be and will also add the 96 per cent success rate. They will be circulating for advice before sending to the Cabinet Secretary.

Response to group letter from Social Security Scotland Chief Executive Officer (CEO)

The Senior Policy Officer for Terminal Illness and Senior Medical Officer from Scottish Government gave an update on the group letter issued to David Wallace on 28 November 2024 requesting email be used by Social Security Scotland as the primary source of contact with clinicians when seeking BASRiS information. 

Action 3: Officials to circulate the letter from David Wallace, requesting feedback from members on challenges faced by using telephone calls as the primary source of contact with clinicians. 

SRTI journey for individuals receiving Disability Living Allowance (DLA)

The Senior Policy Officer for Disability Living Allowance from Scottish Government provided an update on the SRTI journey for those receiving DLA.  

Scottish Adult Disability Living Allowance (SADLA) is the replacement for DLA for adults and is accessible by case transfer only. There will be no new applications for this benefit. Scottish Adult DLA will launch on 21 March 2025. Around 66,000 people will have their awards transferred from the Department for Work and Pensions (DWP) to Social Security Scotland between the launch date and the end of December 2025.  

Many Scottish Adult DLA recipients are older people, with two thirds being over state pension age. Many haven’t reported a change of circumstances in the last 10 to 12 years and are therefore considered to be a vulnerable and isolated group. 

In DLA under DWP, there are two cohorts of clients: 

• those who were scheduled to move to Personal Independent Payment (PIP)
• those who were over 65 when PIP launched and had a guarantee they could stay on DLA indefinitely 

Case transfer will therefore be split for Scottish Adult DLA as the DWP do not have a mechanism to review a change of circumstances on DLA. 

People in receipt of DLA who become terminally ill and were born after 9 April 1948 will trigger expedited case transfer to Scottish Adult DLA. 

Those born on or before 8 Apr 1948 who become terminally ill will be assessed by DWP against their Special Rules for End of Life (SREL) in the first instance. Expectations are that nearly all of these clients will receive a positive SREL decision from DWP. However, if DWP make a negative decision, the individual’s award will undergo an expedited transfer to Scottish Adult DLA, so that their award can be considered under Social Security Scotland’s SRTI rules.

Members asked how this can be explained to clinicians. Officials noted that information is available on mygov.scot about Moving from Disability Living Allowance to Scottish Adult Disability Living Allowance. This breaks it down by date of birth and simplifies the information. Officials worked with content colleagues to explain the case transfer journey and to make clear where individuals should report a change of circumstances. 

For clinicians, it is recommended that a BASRiS is used if someone with a Scottish address is reporting a terminal illness diagnosis to DWP for DLA. DWP confirmed they will accept BASRiS for DLA clients, using it to assess against their own SREL. In the instance that DWP made a negative decision on an award which is then transferred to Social Security Scotland, the individual would already have a BASRiS, making the process quicker. 

Members said that DWP do not accept BASRiS, only SR1 forms. Officials clarified that the DWP have recently made the decision to accept BASRiS for Special Rules for DLA. DWP are trying to phase out the DS1500. 

Update on Communications Strategy

The Senior External Communications Manager from Social Security Scotland provided an update on the Communications Strategy.

Communications colleagues are working with colleagues in Social Security Scotland’s Strategic Communications team to work on approaching senior leaders in key organisations to make them aware of the BASRiS and SRTI processes. 

Colleagues from Social Security Scotland’s Health and Social Care team are working on a presentation which will be used for events. Since the last NIG meeting, Communications colleagues have had a request from a local cancer care organisation to provide them with information and will deliver this presentation to them. They are focusing on opportunities to meet people face to face. The presentation will be tailored to each audience.

On 7 May 2025, Social Security Scotland is holding an online event on Special Rules for Terminal Illness/BASRiS for healthcare professionals. This will talk through the BASRiS process, what it is, why it is important and how to complete the form. This approach hasn’t previously been attempted: it is incredibly challenging for doctors and nurses to come to events as they are very busy. The Health and Social Care team will review attendance and look at other options if it is not well attended. 

Communications colleagues are pulling together email lists from previous events which they would like to share with this group and send to networks. They are looking into designing a flowchart. In the CMO Guidance, there is a flowchart which, if helpful, could be made more widely available by Communications colleagues.  

They also suggested that it would be helpful to receive input on the channels which members prefer to access for information and whether they prefer a physical leaflet on their desk or online channels.  

Communications colleagues are sharing information on social media. This is a very broad audience and not targeted to specific groups. They suggested that YouTube instructional videos may be an option for the future. It would be helpful to ask doctors and nurses who have completed a BASRiS to talk about the process in these videos as others are more likely to listen to peers. Colleagues asked if any members would like to volunteer or if they can share this proposal with their wider networks. Information on BASRiS was also included in the GP newsletter. 

Colleagues met with the Royal College of GPs (RCGP) and shared their content on their channels. Feedback from RCGP was that the guidance on the Social Security Scotland website could be clearer.

Members suggested that the TURAS platform is where Registered Medical Practitioners and Registered Nurses go for education in Scotland so adding information to this would be beneficial. NHS Inform was also suggested as a platform as clinicians are often signposted to this.  

Communications colleagues have contacted NHS Inform. They have not asked about adding videos, but they have a page on benefits which mentions DWP and Macmillan but not Social Security Scotland.

Future of the group and any other business

Officials reminded members that this will be the final scheduled quarterly meeting. Future meetings will be arranged on an ad-hoc basis when there are sufficient updates to be shared. 

Action 4: Officials to re-circulate the Terms of Reference (ToR) for the NIG and request comment. 

The Chair thanked members for attending and closed the meeting.