National Implementation Group on Terminal Illness for Disability Assistance minutes: September 2023

Attendees and apologies

Attendees

• Suzie Gilkison (Chair), Senior Policy Officer, Scottish Government
• Fiona Duff, Senior Adviser, Health and Social Care, Scottish Government
• Ellie Wagstaff, Policy and Public Affairs Manager, Marie Curie Scotland
• Ben Boyd, Head of Operations Health and Social Care, Social Security Scotland
• Flora Watson, NHS Scotland
• Tahira Sharif (deputising for Lynn Hammell), Operations Manager, Social Security Scotland
• Christopher Traynor, Project Lead, Social Security Scotland
• Claire Pullar, MIP Health Representative from Scottish Partnership Forum
• Susan Webster, Head of Policy and Campaigns, MND Scotland
• Angela Munro, Admin Support, Scottish Government
• Padmini Mishra, Senior Medical Officer, Scottish Government
• Shonagh Martin, Policy Officer, Scottish Government
• Donna O’Boyle, Scottish Government
• Teresa Cannavina, Scottish GP Committee
• Helen Malo, Policy and Advocacy Manager, Hospice UK

Apologies

• Dr Jenny Bennison, GP, Niddrie, NHS Lothian and Vice Chair of SIGN
• Kirsty MacIver, NHS Scotland
• Lynn Hammell, Head of Operations, Social Security Scotland
• Siobhan Toner, Operational Policy Team Leader, Social Security Scotland
• Dr Linda de Caestecker, Director of Public Health, NHS Greater Glasgow and Clyde
• 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
• Richard Gass, Welfare Rights and Money Advice Team (Glasgow City Council)

Items and actions

Welcome and introductions

The Chair welcomed members to the 14th meeting of the National Implementation Group on Terminal Illness (NIG). 

Update on actions from last meeting

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

Action 13A: Provide an update on the low use of the digital application form.

Members agreed that it will take time for uptake of use. The Chair updated members that the digital application form was promoted at Special Rules for Terminal Illness (SRTI) stakeholder events in May 2023 and at Adult Disability Payment (ADP) anniversary events in August/September 2023. The digital route for both an SRTI application and Benefits Assessment for Special Rules in Scotland (BASRiS) form has also been promoted via the Practice Managers Network newsletter.

Members suggested that Scottish Care Information (SCI) Gateway could be used as a portal for General Practitioners (GPs) and highlighted that other social security benefit systems use this method. Officials clarified that the digital portal referred to is for clients who are applying for ADP via Social Security Scotland. Officials agreed to look into SCI Gateway as a method by which GPs can communicate with Social Security Scotland.

Members asked if the digital application route is available for charitable hospices. Officials confirmed that it is available to them and to NHS colleagues. Officials agreed to share more information with Helen on the stakeholder events and what was highlighted at these.

Members noted that some individuals prefer to complete the application form over the phone as opposed to using the digital method. It was noted that the digital form is a positive step forward. Officials agreed that the digital form is very useful and ensures that application forms are completed correctly first time. 

Action 13C: Social Security Scotland officials to find out an approximate figure for the amount of BASRiS forms which have incorrectly been sent to the Department of Work and Pensions (DWP) instead of Social Security Scotland.

Officials informed members that there are limitations to gathering this particular data, but the Scottish Government has shared information on how to complete and submit the BASRiS form at stakeholder events. 

Data on SRTI application forms has been shared within the latest ADP statistics published on 19 September. Members were invited to read Table 9 of this document which focuses on the number of Special Rules decisions by processing time. SRTI data was published for the first time. The median processing time is two working days. Officials shared that the aim for Social Security Scotland is to process Special Rules applications within seven working days where both an application and BASRiS form have been received. 

Action 13N: Find out the proportion of inappropriate SRTI applications. 

To be discussed at future meeting.

Action 13E: Communications to be sent out to remind medical professionals via Practice Managers Network newsletter to save the PDF of the BASRiS form once this has been filled out.

Officials informed the group that information on this was shared at the stakeholder events in May, August and September 2023. It was clarified that once the PDF of the BASRiS form has been saved, it can then be sent to the individual, or a third party organisation acting on behalf of the individual, in order to gain access to wider support or signposting.  

Social Security Scotland are working towards developing an email prompt which will link to the PDF version of the BASRiS form. 

New Action 14A: Officials to share information with Kirsty MacIver, NHS Scotland on saving the BASRiS PDF form so this can be included in the Practice Managers’ Network newsletter.

Action 13F: Social Security Scotland officials to explore whether it’s desirable to include extra information on the application form regarding the use of equipment/aids in order to allow for better signposting to support.

This action will remain open.

New Action 14B: To add continuous improvements to the SRTI application form to the agenda for a future meeting.  

Action 13G: SG Officials to check with Department of Work and Pensions (DWP) how they are communicating the change to the DS1500/SR1 form to all necessary parties. 

Officials informed the group that there have been several routes by which DWP have communicated the change to the DS1500/SR1 form with all necessary parties. This includes: 

•    clinical bulletins sent to over 29 stakeholders and communication channels
•    hosting of a stakeholder roundtable
•    hospice visit
•    the Ministry of Finance and Development Planning (MfDP) hosted an MP Parliamentary drop-in 
•    MfDP spoke at the All-Party Parliamentary Groups (APPGs) for palliative and end of life care 
•    DWP updated their Special Rules for End of Life guidance on the gov.uk website

Action 13H: SG Officials to ask DWP how long they will continue to accept DS1500 forms. How are they making sure that if a DS1500 form is used, that the clinician is now considering the 12 month life expectancy? 

Action 13I: Social Security Scotland officials to update Social Security Scotland guidance and FAQs to reflect the change in DWP forms.

Officials updated members on the progress of actions 13H and 13I. 

DWP have provided Scottish Government officials with an update. There will be a ‘natural’ switch over from the DS1500 to the SR1 rather than having a ’sunset’ date. DWP staff will process a DS1500 in the same way as the SR1 while they are still receiving them. Where a DS1500 is provided a process is in place to encourage clinicians to use an SR1 in future. But confirmation is given that the submitted DS1500 will be processed. 

DWP have clarified that, although the DS1500 form is still accepted, their publicly available guidance clearly states that the SR1 form has replaced the DS1500 form. 

Social Security Scotland service and content designers are updating the Guidance Library and mygov.scot guidance to reflect the change in DWP forms. The Chief Medical Officer’s (CMO) Guidance is also being updated to reflect the change. 

Action 13J: SG Officials to send out an update in the Practice Managers’ Network newsletter to say that the online portal is now live and the digital BASRiS form can now be used. 

Officials sent a newsletter item to Kirsty MacIver, NHS Scotland to promote the digital portal and to explain how different BASRiS formats need to reach us – this is different depending on whether it’s a paper, editable PDF or webform version of the BASRiS. The same update also covered the DWP life expectancy changing from 6 months to 12 months, the replacement of the DS1500 with the SR1, and the difference in the terminal illness definition from the Scottish perspective. 

Members asked for clarification on when the BASRiS form and SR1 form should be used. Officials confirmed that the BASRiS form is used for Scottish disability benefits (Child Disability Payment and Adult Disability Payment). The SR1 form has replaced the DS1500 form used for DWP benefits. Members report that this has caused some confusion as it can depend on the order that people apply for benefits. 

For example, if someone is applying for Universal Credit (UC) they must use the SR1 form (replacing the DS1500 form). The SR1 provides DWP with confirmation that the person meets their terminal illness definition (12-month life expectancy). If they subsequently apply for Adult Disability Payment, the same SR1 form can be used because Social Security Scotland will accept this. However, if someone has applied first for Adult Disability Payment using a BASRiS form, they cannot then use the same BASRiS form to apply for UC. This is because the DWP do not accept BASRiS forms due to their different terminal illness definition. 

Action 13K: SG officials to provide further clarification over client consent in FAQs or within the Practice Managers newsletter.

Officials informed members that the CMO guidance is currently undergoing amendments and sections on consent will be updated. Officials highlighted the three main ways that a clinician is asked to provide a BASRiS form to be submitted to Social Security Scotland: 

1. A clinician decides that completion of a BASRiS form is required for their patient. In this situation, they must have valid informed and explicit consent from the patient and/or their representative to share information securely with Social Security Scotland. This consent should be noted in the individual’s clinical records. In some cases, a BASRiS may need to be sent to Social Security Scotland without the explicit consent of the patient. For example, if the clinician believes that disclosing the clinical information will be harmful to the patient. This must also be noted in the patient’s clinical records and communicated to Social Security Scotland by completing the relevant section on the BASRiS form.
2. An individual or their representative can ask their clinician to complete a BASRiS form. In this instance the requirement for valid informed and explicit consent is the same as in the first scenario above.
3. An individual or their representative can send an application form for disability benefits under special rules for terminal illness, without a completed BASRiS form, to Social Security Scotland. In this scenario, they have already consented to sharing this information with a named clinician. If Social Security Scotland require and request a BASRiS form from a registered medical practitioner/registered nurse, Social Security Scotland will have already obtained consent from the individual requiring a BASRiS. The individual gives the name and contact details for their preferred healthcare professional on the SRTI application form. The individual can indicate on the form that their preference is for Social Security Scotland to request the clinical information from their healthcare professional. Social Security Scotland staff are trained not to disclose a terminal illness diagnosis or mention a BASRiS (or equivalent) form when speaking to an individual as this may reveal a terminal illness diagnosis that they are unaware of.

Action 13L: SG Officials to send future stakeholder engagement event link to external members. 

Officials sent members the details and the link to the Special Rules for Terminal Illness update event by email on 17 April 2023. The group agreed to close this action.

Action 13M: Social Security Scotland staff to give clinicians warning if individuals have been referred back to discuss harmful information. 

Officials shared Social Security Scotland guidance for handling harmful information with members before the meeting.

Officials asked members whether they think the guidance is worded correctly and if they have any experience of this guidance not being followed. It was highlighted that the guidance has a line which states Social Security Scotland colleagues should ‘refer to external health professional to trigger a discussion between Social Security Scotland and the clinician’. However, perhaps there could be something more specific added to the guidance. 

Members and officials agreed that the likelihood of a clinician withholding harmful information is low so this guidance will not be used often. If a clinician is withholding harmful information, this would be for very good reason. Members advised that this should be emphasised to Social Security Scotland colleagues. It was also suggested that operating procedure should state specifically how clinicians will be contacted by Social Security Scotland and the completion of the BASRiS form should form part of that discussion. 

Members suggested the guidance should state who case managers should contact as clinicians should not be contacted about forms they haven’t completed themselves. Officials agreed on this and suggested that contact could be made by phone call or by a standardised letter. Social Security Scotland said that in their view a phone call was the best option. The preference of clinicians is that contact be made by email, however this option is currently not in place.

Members asked, if the client is in touch with a third party when applying, should the conversation be steered away from using the term special rules. Officials informed members that Social Security Scotland staff don’t mention terminal illness or special rules to an individual. Staff are trained not to disclose a terminal diagnosis. There is no mention of a BASRiS, SR1/DS1500 form since these might reveal a terminal illness diagnosis.

Officials informed the group that the CMO has just issued new guidance regarding a change in terminology from anticipatory care planning to future care planning and a working group has recently been established named the Future Care Planning Group. Officials agreed to be in touch with members of the group to look at ways to work together in future. 

Action 13B: Provide clarity on Social Security Scotland difficulties in obtaining the verbal BASRiS from medical professionals. 

Officials highlighted the main reasons for difficulties in obtaining a verbal BASRiS are:

•    clinicians may not be available or willing to speak to Social Security Scotland staff on the telephone, and several follow up calls are required 
•    Case Managers may be unable to make contact with the ADP applicant, resulting in delays

Officials clarified that if a verbal BASRiS is not received, there is an escalation process in place. 

Action 13D: Social Security Scotland officials to look into their ability to be able to respond to information requests in a way that adheres to GDPR guidelines.

Officials confirmed that all staff in the Scottish Government and in Social Security Scotland are trained fully on adherence to GDPR guidelines. 

Action 13O: Update on the transition from Programme to Social Security Scotland. 

Officials provided an update on activity to transition some policy delivery functions to Social Security Scotland. 

Amendments to the Chief Medical Officer’s (CMO) Guidance 

Officials informed members that the Chief Medical Officer’s (CMO) Guidance is currently being updated. Sections of focus include, but are not limited to: 

• the Adult Disability Payment national launch 
• the upcoming Pension Age Disability Payment (PADP) pilot launch 
• SR1 form updates
• flow chart updates 
• sections relating to the consent of the patient
• clarification that the date of clinical judgement of terminal illness should be the date a registered doctor or registered nurse made the clinical decision that a person met the Scottish terminal illness definition.  This is different to the date on the fee claim form which requires the date the BASRiS form was completed and sent.
• updates to worked examples 

Officials informed members of work underway to make the document more interactive and user-friendly. Officials will work closely with the Communications and Engagement Team on this.

Members were invited to provide input to the guidance updates. Several members offered their assistance with this. Changes made by officials will be highlighted in red and any changes which require input from members will be highlighted in yellow. 

Officials informed members that for special rules applications, awards are calculated, at the latest, from the date of application. Officials explained that the BASRiS must explicitly state the date of clinical judgement (of terminal illness). Even if the BASRiS is completed at a later time, the date of the clinical judgement is the one that must be recorded. This ensures the BASRiS form accurately reflects when the individual was diagnosed as terminally ill.

Officials also informed members that case managers are trained to record the date of clinical judgement. 

Susan Webster, MND Scotland is keen to meet with officials to discuss instances where the date of application has been used instead of an earlier date of terminal illness diagnosis to inform the date of entitlement.

Action 14C: Susan Webster, MND Scotland and Tahira Sharif, Social Security Scotland to meet to discuss instances where the date of application has been used instead of an earlier date of terminal illness diagnosis to inform the date of entitlement.

Update on communication between clinicians and Social Security Scotland

The Chair highlighted that this was identified as a priority for discussion at the April 2023 meeting. 

Officials in Social Security Scotland informed members that the Data Protection team are concerned about the use of email as a means to communicate information to clinicians. Officials are keen to use SCI Gateway but there are some technical issues related to its use. 

The Data Protection team have agreed that Social Security Scotland colleagues can set up an email mailbox to enable communication with clinicians as a temporary measure. This will be in effect from mid-October and in use for six months while other options are explored. There is an option to extend the use of the mailbox if needed. Meanwhile, it is hoped that SCI Gateway can be set up. The mailbox communication method will be monitored to determine how effective it is. 

Officials agreed to update the CMO guidance to reflect this process. 

Temporary guidance for changes to the SR1 form

Officials informed members that Social Security Scotland colleagues sometimes receive an SR1 form which has only been partially completed, with no registration details included. The form can only be accepted if it has been completed in full.

The Chair clarified that this is something that has been raised at recent stakeholder events in August/September and has been added to the Practice Managers Network newsletter. 

Officials informed members that Social Security Scotland staff will capture any missing information via a follow up call to clinicians, but it will help to speed up the application process to have forms filled out correctly first time. 

Action 14D: Officials to continue monitoring how many SR1 forms are sent to Social Security Scotland which are only partially completed.

SRTI evaluation discussion  

The Chair informed members that the Research and Evaluation team will be conducting a research project on SRTI in the coming months. This is currently at the discussion stage. Members were invited to provide suggestions on areas to focus on for their interests. 

Officials also explained to members that the team is keen to gather the opinions, voices and experiences of those who are terminally ill to better inform decisions. Due to the sensitivities involved members are invited to provide advice and/or suggestions on how the team can involve people with a terminal illness appropriately in the project. 

Action 14E: Members to provide insight and suggestions as to what areas should be focussed on for the SRTI research project. 

Updates to the Terms of Reference

The Chair informed members that the Terms of Reference for the group has been updated and this was sent to the group prior to the meeting. Members were invited to provide comments on the new Terms of Reference once they had reviewed them.  

Agree priorities for future meetings

The Chair informed members that the CMO guidance may be discussed by correspondence before the next quarterly meeting. Officials will be in touch with members as necessary. 

It was agreed that the next meeting would take place in late January / early February 2024. 

Action 14F: Officials to arrange a date for the next meeting.

Any other business and close

The Chair informed members that Carer Support Payment, our replacement for Carer’s Allowance in Scotland will be introduced in pilot areas from the end of 2023. National roll-out is planned from spring 2024. Members were also made aware that the pilot for Pension Age Disability Payment, the Scottish replacement for Attendance Allowance, will launch in Autumn 2024 ahead of national launch in 2025. 

The Chair thanked members for attending and closed the meeting.