National Implementation Group on Terminal Illness meeting minutes: April 2023

Attendees and apologies

Attendees

• Dr Jenny Bennison (chair)
• Suzie Gilkison
• Fiona Duff
• Ellie Wagstaff
• Siobhan Toner
• Ben Boyd
• Flora Watson
• Lynn Hammell
• Melanie Cross
• Kirsty Maciver
• Nathan Gale
• Margaret Grigor
• Gordon Dawson
• Angela Munro
• Padmini Mishra
• Christopher Toner
• Shonagh Martin
• Keith Miller
• Donna O’Boyle
• Mimi Nicholls

Apologies

• Teresa Cannavina
• Dr Linda de Caestecker
• Helen Malo
• Annabel Howell

Items and actions

Welcome and introductions

The Chair welcomed members to the 13th 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 Point 1: Low use of the digital application channel.

Members agreed to continue this action point until an update can be provided

Action Point 2: Programme colleagues to liaise with Dr Mishra about specific case raised in Meeting 12. 

This case was indicative of a wider issue of Social Security Scotland struggling to engage with some medical professionals. This will be discussed later on in the agenda 

Learning from ADP national launch

Officials reflected on the key successes and lessons learned from the Adult Disability Payment (ADP) national launch of 29 August 2022. 

It was highlighted that targeted communication with key stakeholder groups, such as medical professionals, was important for being able to relay guidance and procedural updates. The work of members of the Terminal Illness NIG and the expertise they possess was fundamental to accessing relevant networks and communication channels. The role of the Practice Managers Network was raised as an important vehicle for communicating change and the network should be fully utilised in the launch of future Scottish Government benefits. Forming relationships with key stakeholder contacts early on is noted to be central to improving future processes. 

There were some highlighted areas in which the process could be improved in the future. It was noted that there could have been a better understanding of the comprehensive way third sector organisations help terminally ill individuals gain access to social security. As well as this, some key changes (such as white listing, clarity over who can give/receive information) should have been in place from the outset. 

Social Security Scotland officials informed members that there is further education to be done in ensuring those completing supporting forms (BASRiS, DS1500 or SR1) send them to the correct Agency in order to ensure the process is seamless for individuals applying for support. Officials at Social Security Scotland are continuing to form relationships with medical practices as some describe feeling ‘cold-called’. Officials are continuing to refine operational guidance as a result of stakeholder feedback. 

Action Point 3: Social Security Scotland officials to find out an approximate figure for the number of BASRiS forms which have incorrectly been sent to the DWP instead of Social Security Scotland.

(redacted) 

Update on BASRiS communications and guidance

Urgent updates to the BASRiS form took place in December 2022. This was necessary when it became evident that the date clinicians entered on the form may not be the date of clinical judgement in a minority of cases.  The form has now been changed to make it explicit that the date provided on the form is the date of the clinical judgement, rather than any other date (such as the date the form was completed) if this is later than the clinical judgement. Guidance and public facing documentation has been updated to reflect this change. An unrelated change has been made to the BASRiS fee form: ‘date of consultation’ has been changed to ‘date of completion of BASRiS form’ in recognition of the fact that these may not be the same date and it is the latter which is relevant. 

Giving effect to the change to the BASRiS form in tight timescales was challenging for Social Security Scotland colleagues. Officials thanked the members of the NIG for their work in helping to address this issue. There have since been very few instances of third sector organisations getting in contact in order to query the date provided on the form. 

Officials provided an update on the digital BASRiS. This has been delivered and is working. It is available for anyone with access to the NHS website and is the simplest and quickest way of for clinicians to complete the form. 

The web portal has also been given positive feedback by stakeholders. This has allowed anyone who is assisting the client to upload a copy of the BASRiS form alongside the client’s application. For healthcare professionals this will save time. The web address for the online portal is also available through the Social Security Scotland website. 

Members raised questions over whether the BASRiS form, once completed, would then be available for medical professionals to save and to be shared for the individual to access other means of support. Officials confirmed that the BASRiS can be shared if needed for this purpose. The clinician completing the BASRiS form is able to save and email this out to any third sector organisation, however there is currently no prompt on the form to do this. Social Security Scotland would not be able to send the BASRiS form back out to the medical practitioner, or to anyone else due to data protection compliance.  

Members highlighted that some medical professionals may be hesitant about saving or sending a completed BASRiS form to individuals or organisations. In the event a person goes to a practice and asks for this information, a lot of practices require a Subject Access Form which can take up to 30 days to respond to. Officials are looking into this issue. It has been highlighted that in the future with the NHS Digital Portal, individuals will have access to their clinical information being held by NHS Scotland. 

Action Point 4: 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.

Members suggested including questions on the BASRiS form which would allow the medical professional to inform Social Security Scotland of the individual’s additional costs which come from their condition, such as the energy costs that come from running medical equipment. This would provide an opportunity for Social Security Scotland colleagues to signpost these individuals to other forms of support or grants that may be available. 

Officials confirmed that this is not currently accounted for in the BASRiS form, but there is opportunity for a clinician to include this as part of their clinical judgement. They noted that there needs to be a balance between making the forms straightforward and quick, and being able to take the opportunity to engage for the client. It was further reiterated that the purpose of the BASRiS form was purely to determine the clinical judgement, rather than the individual’s benefit entitlement. It was suggested that this could instead be considered as an additional question on the application form  for Social Security Scotland colleagues to signpost the individual to other support, third party organisations or for other Social Security Scotland benefits.

Action Point 5: Social Security Scotland officials to explore whether it’s desirable to include extra information on the application form regarding the use of equipment and aids to allow for better signposting to support.

A further update was provided by officials to inform members that the Department for Work and Pensions (DWP) have changed their definition of terminal illness for the purpose of their disability benefits and means tested benefits such as Universal Credit. The definition is now centred around a life expectancy of twelve months (previously six months) – effective from 3 April 2023.

The DWP have also introduced a new SR1 form which has replaced the DS1500 form. These are both forms used for claiming benefits under the special rules for people with a terminal illness. However, they will still be accepting the DS1500 for an unspecified period. Social Security Scotland is able to accept the DS1500 or SR1 if the individual does not have a BASRiS form. This is not a reciprocal arrangement due to the nature of the DWP terminal illness definition. That is, a person in Scotland would still need an SR1 form (DS1500 still accepted) to apply for reserved benefits (including Universal Credit or Employment and Support Allowance) with DWP.

Officials noted that there may be some instances where the individual may need to obtain an SR1 form alongside a BASRiS form. If they have applied for Scottish disability assistance initially, then proceed to apply for reserved benefits with DWP.

Members informed that the introduction of the SR1 form has created an additional layer of confusion for medical professionals. 

Action Point 6: Scottish Government officials to check with DWP how they are communicating the change from the DS1500 to the SR1 form to all necessary parties.

Action Point 7: Scottish Government 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 Point 8: Social Security Scotland officials to update Social Security Scotland guidance and FAQs to reflect the change in DWP forms.

Service Design Update

Scottish Government programme colleagues are currently working on handing over the Special Rules for Terminal Illness (SRTI) service to Social Security Scotland. Work is ongoing to map out how this transition will take place. 

Discussion relating to Practice Managers Network

Within the Practice Managers Network, there are local coordinators in each local authority area who have the role of disseminating information to GP Practices across Scotland. There is a weekly newsletter which is sent out to these local coordinators. There is also a private Facebook page including about 400 members, which is effective for disseminating information, including the weekly newsletter. This was important for the roll-out of the BASRiS form as this provided FAQs and provided links to the Social Security Scotland website. A further update was sent out via the Practice Managers Network in December regarding the update in the BASRiS form and launch of the digital BASRiS (see agenda item 4). It was flagged that the link to the digital BASRiS form wasn’t provided at the time, and it would be helpful to include that as a new item in the newsletter.  There were no queries regarding this December update. 

(redacted) 

Action Point 9: Scottish Government officials to send out an update in the Practice Managers’ Network newsletter to say that the online portal is now live.

Members discussed some clinician concerns regarding client consent. It needs to be highlighted that if an individual has filled out an application form and issued their consent to Social Security Scotland to contact their medical professional, it would not be necessary for the individual to give their consent directly to the medical professional. Query raised over whether this issue can be addressed in the Practice Managers newsletter or the general FAQ. 

Action Point 10: Scottish Government officials to provide further clarification over client consent in FAQs or within the Practice Managers newsletter.

Agree priorities for future meetings/future dates

Priorities for the next meeting include:

• communication between clinicians and Social Security Scotland
• feedback from Scottish Government and Social security Scotland officials over outstanding action points

Action Point 11: Scottish Government officials to send future stakeholder engagement event link to external members.

Action Point 12: Social Security Scotland 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 due to harmful information being withheld, then the clinician is alerted to let them know to expect this.  

Action Point 13: Social Security Scotland officials to investigate the amount of incorrectly made SRTI applications. Has the previous advice achieved its purpose?

Next meeting will be in August. It was agreed for ad hoc communication to take place between meetings.

Any other business and close

The Chair thanked members for attending and closed the meeting.