National Implementation Group for Terminal Illness meeting minutes: 28 September 2021

Attendees and apologies

Attendees

• Dr Linda de Caestecker, Chair
• Dr Jenny Bennison
• Teresa Cannavina 
• Lisa Cresswell
• Gordon Dawson 
• Richard Gass
• David Hilber 
• Shonagh Martin 
• Jo McKay
• Richard Meade
• Winnie Miller
• Dr Mini Mishra
• Donna O’Boyle
• Claire Pullar 
• Meg Sydney
• Susan Webster

Apologies

• Sandra Campbell
• Pat Carragher
• Alexander Close
• Rod Finan
• Nathan Gale
• Margaret Grigor
• Paul Knight

Items and actions

Welcome and introductions 

The Chair welcomed members to the ninth 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.

Officials confirmed that all actions from the previous meeting have been completed. 

Child Disability Payment 

Officials confirmed that the Child Disability Payment pilot launched on 26 July. So far one application had been received under special rules for a child with a terminal illness. The application was received without a Benefits Assessment under Special Rules in Scotland (BASRiS) form so officials followed the procedure: contacted the health care professional named on the application form, BASRiS information was taken over the phone, a BASRiS form will be submitted in the next few weeks for records. 

There has been some frontline confusion with the BASRiS and DS1500 forms over which form should be used. Meg Sydney and Dr Mini Mishra are available to speak to frontline clinicians to clarify as needed. Officials will ensure future communications will be strengthened regarding when and where changes are taking place and who the BASRiS form does and doesn’t apply to with each stage of the phased roll out. 

Terminal illness definition 

Officials updated that the UK and Northern Ireland Governments have both announced changes to their definition of terminal illness. They will be changing their time limited definitions from 6 months to 12 months and changes will apply to Disability Living Allowance (DLA), Personal Independence Payment (PIP) and Attendance Allowance (AA) as well as Universal Credit (UC) and Employment and Support Allowance (ESA). The changes to the definition for disability benefits will come after the launch of Scottish Adult Disability Payment, which should reduce confusion. 

Officials raised concerns over confusion about the BASRiS form as some GPs weren’t aware of it. Members agreed that this is likely because the forms are new and GPs aren’t completing these forms regularly. GPs will be more aware when Adult Disability Payment launches and the forms are more mainstream. Officials confirmed that there have been a lot of additional communications sent out to pilot areas and stakeholder events were held ahead of the pilot launch. 

Members raised concerns that GPs would be asked to complete BASRiS forms for children in hospital. Members asked that forms are made available to the Royal Hospital for Children in Glasgow and Edinburgh. Officials confirmed that they did speak with these hospitals ahead of the pilot but as they were not in pilot areas the decision was made to not send BASRiS forms until the national launch.  

Members suggested mitigating confusion around the DS1500/BASRiS forms by contacting Practice Managers through the Practice Managers Forum. Officials will explore this. 

Action one: officials to explore sending out additional communications through the Practice Managers Network. 

Support materials – reflection following Child Disability Payment pilot launch

Officials updated that there has been a slight change made to the clinicians factsheet following feedback. ‘Curative’ has been added into the following line: ‘that is not amenable to curative treatment, or treatment is refused or declined by the patient for any reason’. 

The following sentence has also been updated to align with the client leaflet: ‘will automatically get the highest rate for mobility if the child is 3 years old or over’. 

Officials have proposed an additional line under question 12 of the FAQs: ‘Which benefits still require a DS1500?’. The additional line will stress that a DS1500 continues to be completed for adults until Adult Disability Payment is launched. 

Officials have also proposed an additional FAQ on other definitions of terminal illness continuing to be in use. This will clarify that the new definition applies to disability assistance only but that other definitions continue to be in use. This is in response to recent communications about changes regarding Adult Carer Support Plans and the Young Carer Statements which use the 6 month rule (the definition used in the Carer’s Act 2016), and a member’s concern that there could be confusion on the ground about different definitions being in use concurrently.

Members raised concerns that GPs aren’t aware of all of the benefits that their patients will be eligible for. Members agreed that communications to clinicians and welfare advisors need to be clear on what their responsibilities are. Members suggested adding a front page to the BASRiS form that outlines the timescales for national rollouts. Officials agreed that this should be outlined somewhere but as BASRiS forms are already in circulation this is not the most appropriate place. Officials confirmed that there will be further communications ahead of the Child Disability Payment national launch where the message that BASRiS forms are currently only for children will be strengthened. 

Action two: ensure future updates strengthen clarity of message regarding BASRiS or DS1500.

Update on information hub 

Lisa Cresswell gave members a demonstration on the information hub. 

Officials confirmed the helpline will be open between 8am and 6pm. They are aware some GPs are open out of those hours and this is something they will consider. 

Officials welcome feedback from members on this. 

Action three: officials to consider extending the clinicians helpline hours.

Communication in advance of Child Disability Payment national

Officials gave an update on the proposed communications in advance of Child Disability Payment national rollout. 

In the original communications plan, officials were to send out an update three weeks before national launch highlighting key information and making stakeholders aware that Child Disability Payment will now be live (and therefore a BASRiS form required) for all children. 

Officials proposed the update:  

• references the CMO/CNO letter
• highlights that BASRiS forms can now be used for children (emphasise not for adults and clarification of ages between 16 and 18 years) anywhere in Scotland
• includes key information on accessing BASRiS forms 
• highlights that other definitions are still being used (for example Carers Act 2016) to ensure we minimise confusion 
• signposts to the Information Hub, CMO Guidance, CMO/CNO letter and all resources

Officials proposed that they draft an update and share this with members in early October so that members can provide further feedback ahead of this being sent out. The update will be shared with GPs and practice managers through Primary Care Leads, doctors and nurses through Communication Leads of Health Boards and through our list of organisations to disseminate to their networks.  

Members asked if the update could be timed alongside the arrival of the BASRiS forms meaning the forms would arrive shortly after the update is sent out. Officials agreed with this and confirmed that this should be possible.

Action four: officials to draft an update ahead of Child Disability Payment national launch and share this with members for feedback in early October. 

Case transfer – PIP to Adult Disability Payment (consideration for ADP pilot)

David Hilber, Team Leader for Case Transfer gave members an update on case transfer of individuals: 

1. Who are already receiving PIP under special rules with DWP
2. Current PIP clients who become terminally ill 

Case Transfer for clients who are terminally ill will begin after national launch of Adult Disability Payment. The pilot for Adult Disability Payment is only open for new applications meaning where there is a change of circumstances for a current PIP recipient this will continue to be considered by the Department for Work and Pensions (DWP) according to DWP rules. Officials will ensure communications are clear so that clinicians are aware of this. 

Service design update 

Officials gave an update on the distribution of BASRiS forms in advance of Child Disability Payment national. The plan is to send a sufficient number of forms so that practices/hospitals have enough for the launch of Adult Disability Payment. 

Officials confirmed the routes for sending out BASRiS forms: via the health boards to hospitals and hospices and sent directly to all GP practices. If additional forms are needed following the Child Disability Payment launch, these can be requested by contacting Social Security Scotland. Officials asked whether they should send a message through the Practice Manager’s Network to alert practice managers to look out for these. Members raised concerns that the Practice Manager’s Network might not be the right route to disseminate information about the distribution of forms as not all Practice Managers are members of this. Officials should disseminate information through the Primary Care Division as they have contacts for all practice managers and GPs via Primary Care Leads. 

Officials updated that the Clinicians Helpline hasn’t received any calls so far. 

Work is progressing on the digital BASRiS and officials are hoping to give an update on this at the next meeting. The intention is to continue with some paper forms even when digital forms become available to use.

Agree priorities for future meetings

Priorities for the next meeting include:

• learning from Child Disability Payment national launch (both quantitative and qualitative) in themes such as systems, processes, communications, and feedback from users
• communications in advance of the Adult Disability Payment pilot
• update on digital BASRiS 
• development of the Adult Disability Payment pilot

Future dates

It was agreed the next meeting would be held late January/early February 2022. 

AOB and close

The Chair thanked members for attending and closed the meeting.