National Implementation Group on Terminal Illness meeting minutes: 7 June 2022

Attendees and apologies

Attendees

• Dr Linda de Caestecker
• Dr Jenny Bennison 
• Teresa Cannavina 
• Pat Carragher
• Lisa Cresswell
• Gordon Dawson 
• Nathan Gale
• Richard Gass
• Margaret Grigor
• Paul Knight
• Kirsty Maciver
• Shonagh Martin 
• Dr Mini Mishra
• Donna O’Boyle
• Temitayo Onafowokan
• Caitlin Robertson
• Chris Shepstone
• Ellie Wagstaff
• Flora Watson
• Susan Webster

Apologies

• Alexander Close
• Rod Finan
• Jo McKay
• Richard Meade
• Claire Pullar
   

Items and actions

Welcome and introductions 

The Chair welcomed members to the 11th 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 updated on the actions from the previous meeting: 

Action point 1: Officials to contact the chair of the practice managers network and invite them to our next meeting. 

• Kirsty Maciver has joined the group as the representative of the Practice Manager’s Network  

Action point 2: Officials to review wording on application form to ensure it does not suggest that a GP should be the main contact. 

• officials are currently undertaking User Research across the paper application form, digital BASRiS and telephone application to align them all. In the meantime, officials have changed the script when taking an application on the phone to ask for two Healthcare providers

Action point 3: Officials to ensure if a situation arises where the client advisor refers the individual back to their clinician to seek further information of their clinical condition, included where this may have been withheld from them, then the clinician is alerted to let them know to expect this.

• officials are still working on this and will update the group when it has been actioned  

Officials provided further updates on ongoing developments:

• the definition for Terminal Illness has changed in England and Wales as they have increased life expectancy from 6 months to 12 months. This is now in operation to support clients’ applications for Employment and Support Allowance and Universal Credit 
• there is currently a Bill in progress to bring in the new definition for PIP and other non means tested disability benefits  

Update on Adult Disability Payment (ADP) since Pilot launch

Officials gave members the following updates: 

• Adult Disability Payment Pilot launched on 21st March 
• the next phase of the pilot begins on 20 June in Angus, North Lanarkshire and South Lanarkshire
• the number of Special Rules for Terminal Illness (SRTI) applications received in the first month was higher than anticipated but this is now levelling out
• officials have established a dedicated phone line that clinicians can use to call back Social Security Scotland Practitioners   

So far around 50% of applications received through the SRTI route have come from someone who does not have a terminal illness. Officials think that this may be due to confusion between a terminal illness and a lifelong condition. To reduce the confusion, officials have updated their internal operational guidance to include the definition of terminal illness as specified in legislation. This will make it easier for client advisors to discuss this with clients and leaves less room for interpretation. Social Security Scotland will also be running masterclasses with Practitioners to give them more confidence in having conversations with clients about terminal illness. Officials agreed to share the internal operational guidance with members so that they can see the changes made and provide feedback.

Officials are also currently reviewing the Adult Disability Payment webpage to ensure the information on SRTI is clear. Members suggested the wording could be causing confusion as GPs generally wouldn’t use ‘terminal illness’ to describe a patient’s condition to them. Members also suggested comparing statistics with DWP. Officials confirmed that they have previously looked at DWP statistics and anticipated numbers were based around these too.

Officials updated that the digital application channel has received low volumes of applications so far. Officials are currently doing research to find out why this is. Members suggested officials contact National Records of Scotland as they are currently doing similar research into the use of the digital route for the census. 

Officials also updated that the majority of applications have been received without a paper BASRiS form so the information from the form has had to be confirmed with clinicians over the phone. Officials asked members whether there was anything they could do to make clinicians aware of the process. Members agreed that due to the paper forms being sent out a while ago, and clinicians focus on Covid-19, paper forms may have been forgotten about. Once the digital route is available, clinicians will be more likely to submit a BASRiS. 

Service design officials updated on the changes that have been made to the information hub. The editable BASRiS PDF form has now been added to the hub along with information on how to submit the form. The BASRiS fee claim form has also been added as an editable PDF. 

Action point 1: Officials to share internal operational guidance with members. Update by officials from Social Security Scotland on the research into the reasons for the low use of the digital application challenge.

Update on Child Disability Payment (CDP)

Officials gave an update on the most recent statistics for CDP. 

In total there have been 12962 part 1 applications received and 7413 part 2 applications. There have been 32 SRTI applications and in most of these cases, Social Security Scotland have contacted the clinician over the phone to receive the BASRiS information. 

Update on communications in advance of Adult Disability Payment Pilot

Communications have already been sent out ahead of the next phase of the pilot. 

Members raised concerns that issues arising during the pilot could delay the national launch. Officials clarified that this is a ‘phased rollout’ rather than a series of pilots and each of the launch dates are set out in law. Officials also emphasised that the challenges that have arisen have been internal and the experience of clients has not been impacted by these challenges. Furthermore, there have been significant improvements since the beginning of the pilot so officials don’t have concerns around deliverability for national launch.  

Members asked how officials are collecting GPs feedback in the pilot areas. Officials understand that Social Security Scotland have been doing this on an adhoc basis but will return with further information. 

Action point 2: Officials from Social Security Scotland to update on the process of collecting GP feedback. 

Update on digital BASRiS

Officials confirmed that the editable PDF BASRiS form went live on the 31 May and early feedback has been very positive. Clinicians have said the form is concise and easy to use. Further user research will be completed in the following weeks. This feedback will be taken into consideration when designing the web form and full digital solution. 

The editable PDF fee payment form is also now available and user research will be gathering feedback on this soon. 

Officials are aiming to have the web form available for 25 July 2022. The web form is an online solution that will be available to NHS staff via the Scottish Wide Area Network (SWAN). This will run in parallel with the editable PDF, which will continue to be used by staff who don’t have access to the SWAN. 

The full digital solution is expected to become available around November or December 2022. This solution will be available for everyone, including those who do not have access to SWAN, and will include pre-population. 

However, paper forms will always be available if required in particular circumstances.

Service Design update 

Feedback from practice managers, GPs and clinicians on the BASRiS form suggests the many of them are not aware of the BASRiS form or the new processes. 

The group discussed communications around the BASRiS form and whether there was anything more that could be done to make clinicians aware of the process. Members noted that clinicians already get a significant number of emails every day so sending out even more wouldn’t help. Most clinicians won’t be required to complete a BASRiS form very often and it may take some time for everyone to learn the process. Members and officials agreed that sending out more communications would not be helpful and the current communications should continue, however they should be put into a more concise and easy to read format within the email rather than as an attachment. 

Officials confirmed that up to date information on the BASRiS form and the process is already on the information hub. Kirsty Maciver will also update the practice manager’s network at their next meeting. 

Officials updated that as part of research done for the editable PDF BASRiS form, officials spoke with third sector organisations who shared how they support clients to apply for the correct benefit. To support 3rd sector organisations with this, officials will add 3rd sector guidance to the information hub. This will focus on how they can support both the client and any clinicians they work with in completion of the BASRiS form.   

Action point 3: Communications prior to the third phase of the rollout of Adult Disability Payment to include an easy to read format of the main messages in the body of the email.

Agree priorities for future meeting

Priorities for the next meeting include:

• learning from Adult Disability Payment national launch – systems, processes, communications
• national Launch 
• digital BASRiS update 
• CDP Stats Update 
• feedback from practice managers network by Kirsty Maciver 

With the launch of Adult Disability Payment, it was agreed the group will move to two scheduled meetings a year, with adhoc meetings taking place in between if required. 
It was agreed the next meeting would be held late October or early November 2022. 

Any other business and close

The Chair thanked members for attending and closed the meeting.