National Implementation Group for Terminal Illness meeting minutes: 1 February 2022

Attendees and apologies

Attendees

• Dr Linda de Caestecker
• Dr Jenny Bennison
• Claire Pullar 
• Donna O’Boyle
• Dr Mini Mishra
• Ellie Wagstaff
• Flora Watson
• Gordon Dawson 
• Jo McKay
• Lisa Cresswell
• Margaret Grigor
• Meg Sydney
• Nathalie Leger
• Peter Beveridge
• Richard Gass
• Shonagh Martin 
• Susan Webster
• Teresa Cannavina 
• Winnie Miller

Apologies

• Pat Carragher
• Alexander Close
• Rod Finan
• Nathan Gale
• Paul Knight 

Items and actions

Welcome and introductions 

The Chair welcomed members to the 10th 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 and they updated that:   

• further communications have been sent through the practice manager’s network
• they have strengthened the messages on when a Benefits Assessment under Special Rules in Scotland (BASRiS) or DS1500 should be used 
• they have decided not to extend the clinicians helpline hours (8am to 6pm) at the moment, however the hours have been added to the information hub so that it is clear to clinicians when it is available

Officials also provided further updates on ongoing developments.  

The Adult Disability Payment regulations were laid on 17 Dec. These were approved unanimously by the Social Justice and Social Security Committee on 27 January and voted through in Parliament on 9 February. 
The Adult Disability Payment Consequential Amendment regulations (ensuring parity for Adult Disability Payment recipients receive the same passporting entitlements, (for example the blue badge scheme), as Personal Independence Payment (PIP) recipients) were laid on 31 January.

The Section 104 orders (ensuring parity for passporting access to reserved benefits) are all on track to be laid and live for 21 March.

Officials confirmed that Richard Meade and Sandra Campbell have left the group and thanked them for their significant contributions. Ellie Wagstaff has joined the group as the new representative for Marie Curie. Flora Watson has joined the group as the new representative for senior nursing in palliative care. 

Members agreed that it would be helpful to have a member of the practice manager’s network on the group. 

Action 1: officials to contact the Chair of the Practice Managers Network and invite them to our next meeting. 

Update on Child Disability Payment following national launch

Officials updated that processes for Child Disability Payment are working well following the national launch. The general Child Disability Payment application process has received lots of positive feedback, however there is no specific feedback in relation to Special Rules for Terminal Illness (SRTI) applications due to the small numbers of applications so far. 

A higher number of SRTI applications have been received without a BASRiS form, meaning Social Security Scotland practitioners have been reaching out to front line clinicians to collect the information over the phone. This process has been generally working well, although it has sometimes been difficult to reach clinicians and some Practice Managers haven’t understood the urgency of getting through to a GP. 

Officials asked members for feedback on how Social Security Scotland practitioners should approach Practice Managers. Members confirmed that unless it’s a medical emergency, all calls will be put through their routine call back process and practitioners should usually receive a call back within a day or two. 

Members raised concerns regarding practitioners going to GPs for information instead of the child or young person’s clinician, as GPs often don’t have all of the relevant information. Members suggested that when a general Child Disability Payment application form has been completed, Social Security Scotland Practitioners can find out who the child’s specialist clinician is in the ‘further information’ section. Officials clarified that the form asks for the main health care provider rather than for a GP. 

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

Communications in advance of the Adult Disability Payment pilot

Officials proposed two update papers which will be shared ahead of the Adult Disability Payment pilot and invited members to feedback. 

The first update will be disseminated nationally through routes set out in the communications plan. This update will:

• outline the dates of each phase of the Adult Disability Payment pilot - being clear it is for new applications only
• include the following background information as agreed for the previous updates:
  • a reference to the Chief Medical Officer (CMO) guidance and CMO/Chief Nursing Officer (CNO) letter
  • key information on accessing BASRiS forms 
  • a note that other definitions are still being used (such as in the Carers Act 2016) to ensure we minimise confusion 
• signpost to the Information Hub and all resources
• give information on the first round of SRTI stakeholder events

The second update for phase one of the pilot will be sent to Registered Medical Practitioners (RMPs) and Registered Nurses (RNs) working in pilot areas in the week beginning 14 March which is the week before pilot launches. 

Updates for each phase beyond this will be sent four weeks before the change to enable sharing of information about the specific stakeholder events for that phase.

A version will also be developed for Health Board’s to include on their intranet with the aim for this to be shared in the same distribution as the phase one update. 

Officials confirmed that updates will be disseminated through networks identified in the dissemination and communications plan, as well as through Primary Care Leads, Chief Executives and Chief Officers of Health Boards. 

Digital BASRiS

Peter Beveridge gave members a presentation on the Digital BASRiS, which focused on details of the initial release and further planned improvements. 

We are working towards the digital BASRiS launching in June, which coincides with phase two of the Adult Disability Payment pilot. 

Officials clarified that the digital BASRiS form will be a web form. The first iteration of the form will not pre-populate but officials are actively looking into this function. The first iteration of the webform for GPs will however incorporate aspects of SCI-Gateway to pre-populate parts of the Fee Payment Form. 

Officials confirmed that the content and questions on the digital BASRiS form will replicate the paper form. 

Members raised concerns that the timescales for launching the digital BASRiS may be tight. Officials confirmed that there has been a lot of work done over the last year to prepare. 

Members questioned the availability of a PDF form that could be downloaded and returned to Social Security Scotland by secure email. Officials explained that this is also under development.

Officials are happy to provide a further update on the digital BASRiS at the next meeting. 

Harmful information – appeals process and appointee process

Appeals process 

Nathalie Leger gave members an overview of the proposals to ensure that harmful information will not be disclosed to the client through the appeals process.

The first proposal is to give the First-tier Tribunal and the Upper Tribunal a discretionary power to issue a direction to prohibit the disclosure of a document or information to a person if an RMP or RN has advised it could cause serious harm to the mental and/or physical health of that person. 

The second proposal is to allow either parties in the appeal to make a request for information to not be disclosed. The decision on not disclosing harmful information is a judicial decision even if one of the parties to the appeal makes that request.  

The final proposal is to allow a tribunal to disclose the harmful information to a representative of the person as long as the tribunal is content that they’re not going to share the harmful information with the person, or with anybody else. 

Members agreed that the proposals are appropriate and it’s important to have these in place in the unlikely situations where these are required. 

Officials requested any further comments on the paper to be received by 11 February. 

Appointee information

Officials gave an update on appointees for adults legally regarded as capable of managing their own affairs. Work for this appointee type is about to commence and as included in the CMO guidance, once this is available an appointee would be offered in situations where harmful information is being withheld.

In situations where a client has asked about their medical information, they would be referred back to their clinician. Similarly if a client asks why they are being offered an appointee a client advisor will explain it was considered it might be helpful for them on the basis of medical information. 

Officials asked members whether it would be helpful to alert the clinician in instances where client advisors refer them back to their clinician should this occur. Members agreed that it would be helpful. 

Action 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.

Service design update   

Officials confirmed that BASRiS forms were sent out to all GP Practices and Health Boards including particular places for children such as the Sick Children’s Hospitals. The forms were also sent to all Hospices in Scotland and some private practices who are registered with Health Scotland. 

As large batches of forms have already been issued there is no plan to send more ahead of the Adult Disability Payment pilot. New batches of forms can be ordered as required. 

An issue was identified on the BASRiS forms that were sent out ahead of Child Disability Payment regarding the number of boxes for the CHI Number. There was supposed to be 10 boxes, however only 9 are on the form. Guidance has been issued advising people to try and fit their number into the space available. This has been changed on forms that will be sent out in the future and on the digital BASRiS. 

Officials updated that the clinician’s helpline has received no calls so far. 

Officials confirmed that so far there have been a small number of applications through the SRTI route. One was identified by a case manager through the standard application process and two were not eligible to claim under the terminal illness rules. There are currently a number of awards in payment. In all of these the child is under 3 years old so none are receiving the mobility component.

Members asked for an update on the overall statistics for the application for Child Disability Payment and whether the numbers are as expected. Officials confirmed that there will be a publication of data for Child Disability Payment at the end of February 2022. The number of SRTI applications are currently in line with the predictions made during the Delphi analysis. 

Officials updated that the Information Hub will be updated on a rolling basis to support the Adult Disability Payment Pilot and there are a few small amendments to be made to reflect the pilot. A new page will be also be added to support third sector organisations and will give clearer instructions on how to support clients who are applying under SRTI. 

Agree priorities for future meeting and future dates

Priorities for the next meeting include:

• Learning from the Adult Disability Payment pilot launch – systems, processes, communications
• Communications in advance of Adult Disability Payment national roll out
• Digital BASRiS 

It was agreed the next meeting would be held late May or early June 2022. 

AOB and close

It was confirmed that Jenny Bennison is no longer representing the Royal College of General Practitioners, however she will continue to share relevant information with them when asked to. 

Jenny Bennison agreed to continue as Deputy Chair of the National Implementation Group on Terminal Illness for Disability Assistance, while Linda de Caestecker agreed to continue as its Chair.

The Chair thanked members for attending and closed the meeting.