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

Attendees and apologies

Attendees

• Dr Linda de Caestecker, Chair, NHS Greater Glasgow and Clyde
• Param Bhattathiri, Consultant Neurosurgeon & Department Chairman
• Jacqueline Brown, National Engagement and Partnership Lead, Social Security Scotland
• Teresa Cannavina, Scottish GP Committee
• Oonagh Fraser, Principal Research Officer, Scottish Government 
• Suzie Gilkison, Senior Policy Officer, Scottish Government
• Margaret Greer, Strategic Partnership Manager, Macmillan 
• Peter Maclean, Service Manager for Primary Care Contracts, NHS Grampian 
• Helen Malo, Policy and Advocacy Manager, Hospice UK
• Thomas Mulvey, Policy and Public Affairs Manager, Marie Curie Scotland
• Shonagh Martin, Policy Officer, Scottish Government
• Padmini Mishra, Senior Medical Officer, Scottish Government
• Gillian Ritch, Senior Practitioner, Social Security Scotland 
• Flora Watson, Scottish Strategic Nursing Leads for Palliative Care, NHS Grampian
• Susan Webster, Head of Policy and Campaigns, MND Scotland
• Stephen Wilson, Health board Clinical Lead for Realistic Medicine 

Apologies

• Kirsty MacIver, NHS Scotland
• Claire Pullar, MIP Health Representative from Scottish Partnership Forum
• Fiona Duff, Senior Adviser, Health and Social Care, Scottish Government
• 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
• Donna O’Boyle, Scottish Government
• Richard Gass, Welfare Rights and Money Advice Team (Glasgow City Council)
• Ellie Wagstaff, Policy and Public Affairs Manager, Marie Curie Scotland
   

Items and actions

Welcome and introductions

The Chair welcomed members to the 16th 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: Officials to raise with colleagues in Social Security Scotland how written missing BASRiS information is to be sent to them.

Officials confirmed that missing BASRiS information is generally sought over the phone. 

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. 

Officials confirmed that this action was completed and can be closed. 

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

On 24 April 2024, officials sent out a Slido questionnaire relating to the December 2023 changes that were made to the CMO Guidance and the process for completing and submitting a BASRiS form. Members of the NIG had been asked to circulate the Slido via their networks.  

At the time of the 16 May 2024 meeting, the questionnaire response rate had been very low and initial responses were indicating poor results with regards to people’s knowledge of the CMO guidance and the BASRiS process. 

Members agreed to circulate the survey if they hadn’t already and to continue encouraging people in their networks to complete it. It was agreed that the deadline would be extended to 7 June to give people more time to complete it. 

Action 4: Social Security Scotland officials to circulate the Evaluation of Policy Change for Special Rules for Terminal Illness presentation to the group. 

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

Officials confirmed that both actions 4 and 5 were completed and can be closed. 

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

Teresa agreed to take this forward ahead of the next meeting. 

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

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

New Action 2: Teresa to confirm which DWP benefits SCI Gateway is used for and to inform the group.

Live issues for SRTI

Applications coming in through the ‘wrong’ route 

Officials highlighted that two thirds of SRTI applications, for both CDP and ADP, are coming through the ‘normal rules’ application route instead of the faster SRTI route. Although this is not impacting processing times, the client journey could be improved if the majority of terminally ill clients were coming through the faster, dedicated SRTI route. Officials asked members for their input on why terminally ill clients may be coming through the normal rules route, and what could be done to improve this. 

Members suggested the reasons for this may be: 

• miscommunication – clients process information (such as a diagnosis) differently to clinicians 
• the social security system can be difficult to navigate and a lot of clients don’t have a benefits advisor to assist with an application
• some clients may not be fully aware of their condition because information hasn’t been relayed to them properly  
• clients may take the more optimistic (‘normal rules’) application route 

Officials confirmed that applications coming through the normal rules route are coming directly from clients rather than third sector organisations. Members suggested officials find out which conditions are most commonly recorded on applications coming through the normal rules route. Officials confirmed that cancer is the most common condition, but they can look into this further. Members also suggested officials find out the number of applications coming through the normal rules route for each health board area. This could be flagged to health boards who can help raise awareness of this issue and promote the faster SRTI application route for those who are eligible to apply under the special rules.  

Members suggested that there needs to be some consideration of the type of language frontline staff are using to ensure it is easily understood by patients. In NHS Tayside, there is a LearnPro module for new staff on how and when to complete a BASRiS. This type of training could be used on a wider basis, outside of a clinical setting. 

Members flagged that within secondary care, there is no awareness of whether a patient has had a BASRiS form completed for them. If this information was visible to secondary care clinicians, they may be able to pick up on this when it’s been missed. This would also improve the care that could be given to the patient due to recognition of their terminal illness. 

Members highlighted that they are currently trying to introduce ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) forms. It was suggested that a question on terminal illness and BASRiS form completion could be included in this. 

Members suggested that officials make the Chief Social Work Officers (CSWO) aware so that they can pass information to their staff. 

Susan offered to speak with the specialist benefit advisors at MND Scotland as they have had experiences of clients engaging with them having already applied through the normal application route. If members have any further suggestions or information, this can be shared directly with Suzie. 

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 SRTI route. 

BASRiS forms being provided verbally over the phone

Social Security Scotland confirmed that over 40% of SRTI applications in the last year have required a verbal BASRiS. It is protocol that practitioners end the BASRiS phone call by asking the clinician to submit the paper BASRiS form afterwards; if the form is completed and submitted to Social Security Scotland within 28 days the clinician can claim a fee. However, 74% of verbal BASRiS calls do not then result in a BASRiS form being submitted to Social Security Scotland.

This does not affect the processing and payment of an SRTI application but is not ideal and suggests there is no BASRiS form in the patient records. The CMO Guidance states that a written BASRiS should be provided to Social Security Scotland. Clinicians are required by legislation to follow this guidance. 

Members flagged that submitting clinical information to Social Security Scotland over the phone presents a risk to clinicians: they are required to provide sensitive personal information but cannot identify the person they’re talking to. Officials confirmed that, when contacting a clinician, Social Security Scotland staff can leave a message and ask the clinician to phone Social Security Scotland back to confirm they are who they say they are. Officials also confirmed that calls are recorded, however these could not be used as a record, because the transcriptions may have inaccuracies and what is transcribed from the call could be inaccurate and misleading. Additionally, the recordings belong to Social Security Scotland and it is the clinician’s responsibility to store a copy of the BASRiS form for the patient record. 

Members highlighted the clinician shortage and that the current process (verbal BASRiS followed up by a written form) is duplicating work. It was suggested that this could be solved by using email instead. This would be simpler for clinicians, it would take up less of their time and there would be fewer data protection concerns. Members also highlighted that email is currently used by other agencies such as National Records of Scotland and NHS Scotland for forms such as a Death Certificate. 

Update on the email pilot 

Officials confirmed that over the recent six month pilot phase, 20 emails were sent from the dedicated mailbox. This pilot had a limited scope and was part of an escalation process only to be used in certain situations where phone calls and clerical letters had failed to result in a BASRiS being provided. The team responsible for the mailbox thought this was a useful communication method and would like it to continue. 

The six month pilot has ended and therefore no emails are currently being sent to clinicians. There will be a period of evaluation, and work will be carried out over the next few months to establish whether email can continue to be used. 

Members agreed that email should be used on a wider basis to collect missing BASRiS information, instead of phone calls. It was highlighted that in other settings, telephone is becoming the least common method of communication, so moving to email would ‘future proof’ this process. 

Members agreed to write a letter to Social Security Scotland expressing the group’s feeling about the need for a permanent email solution. This letter will quote some of the statistics mentioned during this meeting, and it will highlight some of the DWP benefits for which email has been successfully used. It should state the group want the email issue to be looked into urgently; members would be happy to engage with officials to help get this in place. The letter will be drafted by officials. It will be sent from the Chair and signed by all members. 

Members also flagged an issue with the SR1 form: a copy can be requested by email for those with a secure email address. However, members gave an example of an email request not being answered and the organisation having to wait 10 days to receive a paper copy. This could be because the email address used was not considered a secure address. Members suggested that this should be clarified with the DWP because the process previously used for the DS1500 should be used for the SR1 as well. 

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.

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

Update to Operational Guidance on Harmful Information

Officials confirmed that the Harmful Information operational guidance has now been updated. In ‘harmful information’ cases where a client has asked Social Security Scotland about the level of their award or information provided by their healthcare professional, they will be referred back to their clinician: Social Security Scotland must not inadvertently disclose a terminal illness diagnosis that has been withheld by the clinician. 

Updates to the guidance ensure clinicians are informed/pre-warned when a client has approached Social Security Scotland about their award/diagnosis and has been directed to get in touch with their healthcare professional for further discussions.  

Agree priorities for future meetings

The group agreed that the next meeting would be scheduled for end of August/beginning of September. 

Points to be covered at the next meeting include: 

• Update on the email solution 
• Outcome of the Slido questionnaire 
• Update on the SRTI Evaluation Logic Model 
• Update on progress to reduce the number of terminally ill people applying through the normal rules route instead of the faster SRTI one. 

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

Any other business and close

Members were informed that this would be Linda’s last meeting as Chair and as a member of this group. Officials thanked Linda for her significant contribution to the work of the group. 

Param Bhattathiri, Consultant Neurosurgeon & Department Chairman, will be Chair of the NIG going forward. Flora Watson, Scottish Strategic Nursing Leads for Palliative Care at NHS Grampian, will be Vice Chair. 

The Chair thanked members for attending and closed the meeting.