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

Attendees and apologies

Attendees

• Dr Linda de Caestecker, NHS Greater Glasgow and Clyde
• Suzie Gilkison, Senior Policy Officer, Scottish Government
• Donna O’Boyle, Scottish Government
• Evelyn Bowes, Senior Research Officer, Scottish Government
• Christopher Walsh, National Partnership Development Lead, Social Security Scotland
• Padmini Mishra, Senior Medical Officer, Scottish Government
• Ben Boyd, Head of Operations Health and Social Care, Social Security Scotland
• Richard Gass, Welfare Rights and Money Advice Team (Glasgow City Council)
• Flora Watson, Scottish Strategic Nursing Leads for Palliative Care, NHS Grampian
• Ellie Wagstaff, Policy and Public Affairs Manager, Marie Curie Scotland
• Susan Webster, Head of Policy and Campaigns, MND Scotland
• Teresa Cannavina, Scottish GP Committee
• Tahira Sharif, Operations Manager, Social Security Scotland
• Angela Munro, Admin Support, Scottish Government
• Shonagh Martin, Policy Officer, Scottish Government

Apologies

• Dr Jenny Bennison, GP, Niddrie, NHS Lothian 
• Kirsty MacIver, NHS Scotland
• Claire Pullar, MIP Health Representative from Scottish Partnership Forum
• Fiona Duff, Senior Adviser, Health and Social Care, Scottish Government
• Helen Malo, Policy and Advocacy Manager, Hospice UK
• Lynn Hammell, Head of Operations, Social Security Scotland
• Siobhan Toner, Operational Policy Team Leader, Social Security Scotland
• Annabel Howell, Consultant Paediatrician, NHS Tayside, and Medical Director CHAS
• Rod Finan, Professional Social Work Advisor for Children’s Services, Scottish Government
• Paul Knight, Chief Medical Advisor and Caldicott Guardian, Social Security Scotland
• Tracey Crickett, NHS Scotland
• Mark Hazelwood, Chief Executive, Scottish Partnership for Palliative care

 

Items and actions

Welcome and introductions

The Chair welcomed members to the 15th 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.

The Social Security Scotland statistics team is currently looking into capturing information on Adult Disability Payment (ADP) applications which have come in via the Special Rules for Terminal Illness (SRTI) route but should have been sent in via the normal ADP application route. 

At previous meetings, discussion has been raised regarding the possibility of updating the application form with additional information relating to the use of equipment and aids to allow for better signposting to support. Officials are not currently making any changes, this may be considered under the Social Security Scotland continuous improvement process. 

Officials have connected with the Scottish Government Future Life and Palliative and End of Life Care team who are keen to work closely with the group.
 
Officials have supported the External Communications team with their creation of stakeholder articles on the issue of consent and the clarification of this in the CMO Guidance.
 
Social Security Scotland officials had informed the group at a previous meeting that some SR1 forms (the DWP form accepted as an alternative to the BASRiS) were not being fully completed. This is no longer a wider issue as most forms are now being completed correctly. 

The minutes from the previous meeting were agreed and formally approved by the group.

Re-publication of the CMO Guidance

Officials informed that the Chief Medical Officer’s (CMO) Guidance was re-published in December 2023 and all members were sent an email with the new link for circulation to their networks. Officials provided a summary of the changes made: 

• clarity was given on how the terminal illness definition and Special Rules processes in Social Security Scotland differ to those in the Department for Work and Pensions (DWP) 
• added a sample of the SR1 form for awareness
• the guidance reflects that ADP is now fully launched 
• Pension Age Disability Payment (PADP) will be piloting in Scotland in autumn ahead of the national launch in 2025 
• there is reference to the Carer’s Support Payment (CSP) pilot launch and that CSP will eventually replace Carer’s Allowance currently administered by DWP
• updated information about the process for accessing/submitting a BASRiS form and clarification on consent and situations where Social Security Scotland will need to make contact with a clinician 
• Future Care Planning terminology has replaced Anticipatory Care Planning 
• changes have been made to the worked examples 
• the term ‘whitelist’ (adding to a list of safe emails and IP addresses) was replaced with ‘al low list’ upon feedback from Social Security Scotland Content Team officials

Email pilot

Social Security Scotland officials gave an update on the email pilot which aims to provide another method by which their practitioners can contact clinicians for supporting information for SRTI applications. 

Officials reported that data security and information governance officials had previous concerns regarding the use of email to pass client information from practitioners to responsible clinicians. They have taken this into consideration and now have a secure process in place which involves directing the clinician to the Social Security Scotland website via a link to the BASRiS form.  

Officials informed the group that there has been a slow uptake of use of the email process, but this is likely due to operational variations and is expected to increase. Practitioners are also having greater success in contacting clinicians via a (clerical) letter.

From the small number of emails sent to clinicians, they have found that some clinicians were replying to the email address, which is not monitored. However, the email address sends an automated response to inform them that the address is ‘no reply’ and gives the details of how to contact Social Security Scotland. Officials shared the wording of the email response with members.

Members asked if practitioners were using the email route as a last resort when other means of contact have not been successful. Officials responded that it is amongst a range of options including making a telephone call to the named clinician. On occasion, they may use the practice email address to gain contact, with the clinician then being guided to the Social Security Scotland website to access links to the BASRiS form and Social Security Scotland contact details. 

Members asked if the email is used when a BASRiS form (with missing details) has been submitted so the clinician would not then have to complete another form. Officials replied that the clinician would then telephone Social Security Scotland using the helpline number provided on the website. Officials agreed that they would consult with colleagues in Social Security Scotland on the issue of clinicians sending Social Security Scotland missing BASRiS information.

Officials confirmed that email is used if it is difficult to get in touch with the relevant professional, for example, if Social Security Scotland do not have the name of a covering clinician or where a clinician operates across more than one location. On occasion, this results in emailing the health board. Members noted that it would take some time to obtain the relevant clinician’s name from the health board. Officials updated that it was best for practitioners to telephone and ask for the best healthcare professional to send the email to.  

It was asked whether the 6 month pilot for the email will be extended as there is currently little data to show successes. Officials clarified that the email process will be reviewed after 6 months, with an option to stop at that point if concerns are identified but the intention is to carry on exploring more effective systems for electronic communication for example SCI Gateway. Upon review, Social Security Scotland officials may return to obtain feedback from the group on the pilot. 

Members noted that the email process has limitations for returning information to Social Security Scotland. Officials noted that, in general, practitioners are making calls to clinicians so there is limited need for clinicians to use the helpline and call back. However, the option to use the helpline is there once the ‘contact us’ email is sent. 

Officials assured members that colleagues in Social Security Scotland view the email process as a positive step forward as it gives practitioners more options when contacting clinicians for additional supporting information. 

Action 1: Officials to raise with colleagues in Social Security Scotland how written missing BASRiS information is to be sent to them.

Declaration

Social Security Scotland officials gave an update on the declaration of liability and the role of organisations when supporting clients to complete disability benefit application forms. 

Officials shared the declaration shown on the application form with the members and explained that this declaration of liability must be captured in order to progress an application. When an application is completed, there is a box to tick confirming the declaration, but this is not present for third party SRTI applications made online. Case managers have recently been instructed to follow up with a phone call to obtain the declaration of liability. 

Officials informed that, if the named person in the organisation who helped the applicant complete their ADP application could not be contacted to fill out the declaration, then the individual applying would have to be contacted. This poses an issue for terminally ill applicants, particularly those who may not know they are terminally ill. This also poses an issue for third sector organisations completing SRTI applications on client’s behalf as they may not want to accept liability for the information given by their client as ‘correct and complete’ (as shown on the application form). 

Social Security Scotland’s digital team is unable to amend the online third party SRTI application form this year due to current workload, but officials wished to raise awareness of the issue with members due to the impact on third parties supporting an individual with their application. It was confirmed that this has had more of an impact on ADP than Child Disability Payment (CDP) as parents normally complete an application on behalf of the child. It is anticipated that the number of affected applications here would be very small. 

Officials provided a statement from the Scottish Government Fraud and Error team which informed that the declaration must be captured across the entire benefits estate, as it confirms that the individual applying is submitting information which, as far as they know and believe, is correct and complete. 

Officials confirmed that this would not impact on PADP as the declaration will be included in the online application before pilot launch.  

Members stated that, at the point at which an applicant might have a change in circumstances to report, their relationship with the third party advisor may already have ended. Some professionals/clinicians may feel uncomfortable agreeing with this declaration. Members agreed that the advisor may support their client by completing an application on their behalf. However the applicant is the liable party and as such, it is their responsibility to inform Social Security Scotland - along with their advisor - of any change in circumstances. Members stated a third party may not be able to accept the declaration on the grounds that they are likely not to remain in contact with the person after the application had been submitted. 

Members asked whether they were liable for the information being correct and complete or if liability was attributed to the applicant that they had supported to complete an application (and not completed the application on their behalf). Officials confirmed that the applicant was the liable party. It was also noted that not all applications will be under Special Rules and some will be ‘normal rules’ ADP applications. It was also confirmed that after submitting an application on behalf of their client, the third party advisor will not hear from Social Security Scotland again: all communications are sent directly to the applicant, including information about reporting changes in circumstances.   

Officials informed that, if the third party is completing a telephone application and the person is not terminally ill, the third party will eventually have no further contact with the applicant. Enquiries were made about the kind of questions that are posed at declaration stage during a phone call as this may help with a future workaround. 

Social Security Scotland officials confirmed that, once the period has passed where someone can ask for a redetermination, there is no need for a follow up. This will be explored further internally. Members stressed that the intention was to do the right thing by the person applying. 

Action 2: Social Security Scotland officials to follow up with information in writing on the declaration of liability with regards to the Special Rules application route and the ‘normal rules’ ADP application route. 

Hub Updates

Officials informed that the content team has completed updates to the Social Security Scotland hub. They have ensured that links are working on the corporate website, including the CMO guidance link. The Supportive and Palliative Care Indicators Tool (SPICT-4ALL) has also been updated. The team continuously improves the hub, as required.

Contacting clinicians by email: operational update

Social Security Scotland officials informed members of a miscommunication with a health board area that informed staff not to engage with Social Security Scotland as BASRiS information should only be collected through Objective Connect. This is not the case, as BASRiS information is not sent through this system. This was confused with requests for Supporting Information for applications made under normal rules, which go through Objective Connect. This issue has now been resolved. 

Social Security Scotland officials are keen to engage with the health board to ensure this process of obtaining information is easier for both NHS colleagues and Social Security Scotland colleagues. 

BASRiS Strategy Communications Plan

Officials from National Stakeholder Engagement are currently developing a Slido questionnaire to inform the BASRiS strategy and support future communications about the BASRiS process. The Slido will aim to find out how clinicians are accessing information, what barriers there are and what issues are experienced. 

Members suggested that officials circulate it to groups they already engage with such as the Practice Managers Network. Officials confirmed that the Slido will be available within the next few weeks and asked that the group circulate the survey among their networks. 

Action 3: Social Security Scotland officials to circulate the Slido and request that it is circulated amongst group member networks. 

SRTI evaluation

Scottish Government analytical officials informed the group that their Research and Evaluation team will be conducting a research project on SRTI. This is part of the planned programme of work under the disability benefits evaluation strategy. 

Scottish Government analytical colleagues delivered a presentation on initial scoping work for the planned evaluation of the impact of policy change in terminal illness. Special Rules for Terminal Illness forms one of the core evaluation projects within the disability benefits evaluation programme.

The covered proposed objectives for the evaluation. This included understanding how the Scottish terminal illness definition, and associated CMO Guidance, has been understood and experienced by registered medical practitioners and registered nurses.

It also aims to understand how changes to the definition (and associated guidance) has impacted on caseload and to understand how SRTI clients, and those that support them, experience the process of applying for disability benefits. Additionally, it aims to understand the impact of the SRTI provisions on clients’ experiences and outcomes. 

Officials informed members that they work with a range of teams across the Scottish Government and Social Security Scotland to maximise value from existing data. The evaluation will be underpinned by a theory of change framework. 

They will form a research advisory group to govern the work and asked if any of the members of this group would like to join this. Members were encouraged to contact analytical colleagues if they required further information.

Members were asked the following questions: 

1. does this approach seem sensible? 
2. are these the right things to be focussing on for the evaluation?
3. is there anything else we need to be thinking about?
4. views/thoughts on considerations for engaging the key participant groups (Clinicians, Clients) 

Members offered suggestions about how to best engage with key participant groups. It was suggested that joint engagement with current working groups may be beneficial. Focus groups as a method of gathering information from a wide range of individuals were also suggested. 

Officials agreed that, if there are existing forums, it would be sensible to engage with these and that the research process can be adapted. Members offered their interest in and support for this research and informed that there are existing community engagement teams at Marie Curie consisting of people with experience of supporting those with terminal illness who could get involved. 

Members asked for clarification on two areas of the research: the impact on workload and understanding the Scottish terminal illness definition. Evelyn informed that impact on caseload is referring to Social Security Scotland. This means they will be looking at the number of awards, the range of conditions reported, among other areas. The use of BASRiS and the terminology used may have impacted on workloads as well. There is also an impact on clinicians and their support staff therefore they also would like to cover this area, particularly at transition to agency stage.

Officials are looking to find out how the Scottish terminal illness definition is understood, particularly in relation to the explanation in the CMO Guidance. 

Officials informed that a Framework for Audit of Effectiveness of Implementation of CMO guidance was developed and supported by the CMO.  This document, which is in Annex J of the CMO Guidance, can help to inform some of the questions that may need to be addressed, depending on the aims of the research/evaluation.

Members asked about the timeline for the research project and whether officials will contact the group directly. Officials informed that the project has been scheduled for the coming financial year. Officials informed that the research group will contact policy officials in Scottish Government when they wish to engage with members of the NIG.

Action 4: Social Security Scotland officials to circulate the evaluation of policy change in terminal illness presentation to the group. 

Agree priorities for future meetings

The group agreed that the next meeting would be scheduled for May. 

Points to be covered at the next meeting include: 

• progression around the BASRiS strategy and the declaration of liability
• further discussion on the progress of the evaluation project

Action 5: Officials to arrange a date for the next meeting in May.

Any other business and close

Members asked if there has been any progress on the use of SCI Gateway to complete forms as it is used for other benefits. 

Social Security Scotland officials informed that they are still looking at this as a resource, but they are evaluating it for safety and security. However, the main concern is around how it would work for their needs.

Members informed that it is beneficial as it pre-populates and pulls across past medical history which means only additional current information needs to be typed in manually. This would reduce time spent on form completion. 

The Chair informed the group that Dr Jenny Bennison is stepping away from the group. Officials thanked Jenny for the hard work, support and advice provided during her time working with the Terminal Illness National Implementation group and the Short Life Working group which preceded it.   

Officials informed that a doctor with an interest in realistic medicine may wish to become involved with the NIG. This is currently being finalised with the relevant parties. 

Action 6: Teresa to confirm which DWP benefits SCI Gateway is used for and to inform the group. 

The Chair thanked members for attending and closed the meeting.