National Implementation Group for Terminal Illness meeting minutes: 2 March 2021

Attendees and apologies

• Dr Linda de Caestecker
• Sandra Campbell
• Dr Pat Carragher
• Susan Webster
• Helen Malo
• Donna O’Boyle
• Dr Teresa Cannavina
• Richard Meade
• Richard Gass
• Dr Mini Mishra
• Nathan Gale
• Meg Sydney
• Paul Knight
• Margaret Grigor
• Shonagh Martin
• Jo McKay
• Gordon Dawson
• Clare Young
• Wendy Rizza
• Lisa Cresswell
• Edward McGuiness
• Yvonne Stewart

Apologies

• Rod Finan
• Iain Macritchie
• Dr Jenny Bennison
• Claire Pullar
• Mark Hazelwood

Items and actions

Welcome and introductions

The Chair welcomed members to the sixth meeting of the National Implementation Group on Terminal Illness for Disability Assistance (NIG).

Update on actions from last meeting

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

Following up from an action from the previous meeting, members are to provide comments on the consent section of the guidance by the end of the week.

Officials updated the group on areas that were not covered in the last meeting.

Adult Disability Payment and Child Disability Payment launch:

• the Child Disability Payment Pilot will launch in summer 2021 and the national rollout will be in autumn 2021. The local authority areas for the Child Disability Payment pilot are Perth and Kinross, Dundee City, Western Isles
• the Adult Disability Payment pilot will launch in spring 2022 and national rollout will be in summer 2022

Delphi research:

• the third round of Delphi responses were due on 24 February. There was a dip in the response rate for round 2 and the deadline was extended to allow as many people as possible to respond
• analysts are considering the possibility of publishing the analysis – this would be after the election as SG will soon be entering the pre-election period

Leaflets:

• work will now be progressed with all leaflets for Child Disability Payment to ensure consistency. Social Security Scotland communications were mapping this out in February 2021
• the group will be given further chance to comment on the leaflets following the design phase

Updated CMO guidance v9.2

• updates have been made to page 14 regarding which overseas clinicians can complete a BASRiS form in cases where an individual who is eligible to receive disability assistance lives outside of the UK
• a small change was made on page 38 to wording on the BASRiS form. Officials are hopeful that DWP might in some situations use information from a BASRiS form

Audit of the implementation of the guidance

• updated Framework has been shared with the CMO and it has now been approved

Members approved changes made to page 14 and page 38 of the guidance.

Officials confirmed that the new terminal illness definition and consequently the BASRiS form will be piloted during the Child Disability Payment pilot, which will take place from Summer to Autumn 2021. The local authority areas for the Adult Disability Payment have not yet been confirmed.

Clients applying for Child Disability Payment who live in the pilot area will apply with the BASRiS form. Clients outside of the pilot area will continue to apply for DLA with the DS1500 (to DWP) until the national launch of Child Disability Payment. Officials are expecting the number of applications for Child Disability Payment using the BASRiS form to be low during the pilot period.

Members raised concerns about parity for clients applying outside of the pilot area. Officials confirmed that the need for the pilot is to test the system before it is launched nationally. To avoid the stop and start confusion, the pilot areas will continue and roll into the national launch of Child Disability Payment.

Members agreed that communication and publicity will be crucial to ensure individuals apply for the correct benefit in this time frame and to encourage unsuccessful applicants for Child DLA to apply for Child Disability Payment if they think they meet the criteria.

Officials have agreed with DWP that there will be an accelerated case transfer process for current DLA SRTI clients who are not in receipt of high rate mobility when Child Disability Payment goes live. It will also be possible to make backdated payments to ensure clients receive their award of the highest rate for care and the higher rate for mobility from the date of the BASRiS.

Members were concerned that doing the pilot based on local authority areas could be confusing as GPs, health boards and other organisations don’t tend to work on a local authority basis and have patients across different local authority areas.

Communication needs to be clear that the pilot is based on the patients address and not on the address of the hospital.

Dissemination and communication plan – letter from CMO / CNO to all RMPs and RNs

The CMO/CNO letter will be sent to all Registered Medical Practitioners and Registered Nurses. The letter sets out the changes and the key information that doctors and nurses need to know. The letter will be issued nationally around 2 weeks before the Child Disability Payment Pilot. Officials invited stakeholders to comment on the letter.

Members suggested including more explicit information about the pilot. The details on timescales should be included in the main body of the letter.

Members raised concerns regarding the definition included in the letter saying it is not as clear as the definition included in the guidance. Officials clarified that it is the definition included in the original act but agreed it would be helpful to include the three essential indicators for further clarity. Officials suggested that the letter clearly directs clinicians to the relevant page in the guidance for more information rather than replicating the guidance in the letter and members were happy with this solution.

Officials have invited stakeholders to comment on the letter within the next two weeks. Officials will try to redraft ahead of the next meeting.

Action point 1: members to provide comments on CMO/CNO letter by Monday 15 March.

Action point 2: officials to update the letter to reflect comments

Fee for completion of BASRiS form – update

Officials updated the group on the fees:

• officials have approached SGPC to agree the fee rate for completion of BASRiS form
• officials are proposing that GPs and nurses employed by the independent GP practice contractors and private GP practice (ie not employed by the Health Board) would also be able to claim the fee on behalf of the practice
• in a continuation of current policy – Other medical staff will be able to claim a fee in accordance with their Terms and Conditions. Officials understand that many do not claim the fee but considering the current pressures it was not seen as an appropriate time to make changes to the terms and conditions of medical staff
• officials thanked members for gathering further information relating to current practices for those employed in the third sector. The current situation and views on the issue are mixed.
• the situation is complex as a fee would only be considered where funding has not been provided, which is straightforward for GPs as it is not part of the GP contract. However, the third sector receives some NHS and / or government funding

Officials will be clear that when medical staff working in the third sector are able to claim a fee in accordance with the terms and conditions of their contract, this can be claimed on behalf of their organisation. Officials confirmed that further consideration is being given regarding nurses employed in the third sector being able to claim a fee on behalf of the organisation. This is being considered in terms of wider information gathering that is being done for disability assistance. Members agreed that the process must be consistent and that all employed by a third sector organisation should be able to claim a fee on behalf of the organisation.

Members suggested exploring why a small number of organisations don’t want to complete a DS1500/BASRiS form so that these barriers can be overcome too.

Members emphasised the importance of explaining who is able to claim a fee and the underpinning rationale.

Service design update

Service Design have been working with Social Security Scotland to develop the harmful information feedback loop. Officials asked for feedback from the group on how long Social Security Scotland should wait between receiving an application where harmful information has been withheld, and getting back in contact with the clinician for an update. Service Design were thinking 12/16 weeks. The method of communication, such as a letter or phone call, is currently being considered.

Members agreed 12 weeks was a reasonable time. Officials will include that if Social Security Scotland are given reason to believe harmful information is no longer withheld before the 12 weeks, they will contact the clinician earlier.

Members raised concerns that the process wasn’t necessary for such a small number of people. Officials confirmed that the Cabinet Secretary has agreed to publish figures of volumes of cases where harmful information has been withheld and this process will allow Social Security Scotland to provide accurate figures.

Action point 3: officials to include in the guidance that where the BASRiS form indicates harmful information is withheld Social Security Scotland will contact the clinician after 12 weeks to confirm if the information is still withheld or earlier if they are given reason to believe there has been a change.

Update on digital BASRiS

Officials confirmed that work on the digital BASRiS has begun again after pausing due to Covid. The digital BASRiS will not be available for the Child Disability Payment pilot or national rollout, but should hopefully be ready for the Adult Disability Payment pilot.

Distribution of forms

Officials welcomed stakeholder input on how Social Security Scotland should distribute paper BASRiS forms. They are currently considering two options:

1. Social Security Scotland could send a small batch of forms to every GP practice / Hospice and other organisations who require them. However there is a risk that some forms may not be used, especially once digital BASRiS becomes available.
2. Social Security Scotland could communicate availability of forms ahead of the Child Disability Payment Pilot. Organisations who require the forms can request as many as they need, and these would be delivered ahead of the pilot launch. This would give Social Security Scotland more control over the forms.

Members raised concerns that if practices have to request forms, this will be forgotten about or not done in time. If clinicians do not have forms when they are required this would delay a patients application. When it comes to Adult Disability Payment, every GP will require at least 10 forms. Members suggested storing forms in a central place in Health Boards, similar to other benefit forms. The Health Boards could then distribute the forms as required in their area. Officials agreed to explore this route.

The group agreed that Social Security Scotland should send out a small stock of forms to relevant organisations such as GP practices, hospitals, hospices, etc., and then if more are required they can be requested from Social Security Scotland.

Officials confirmed that the reason the forms are individually numbered and thus can’t be printed or photocopied is to minimise the risk of fraud. If a photocopy of a BASRiS form is sent to Social Security Scotland, the agency would contact the clinician to confirm the information over the phone. Their priority would be to ensure the client gets the support they need.

Members confirmed that officials can get the list of practices/hospices from the health boards.

Update on information hub

The supporting material will be hosted on the guidance section of the Social Security Scotland website and all of the documents will be accessible through a single URL.

The work is ongoing and they are currently exploring how the content is hosted individually on the page. They will be collaborating with content users and the service design team to do this.

Agree priorities for future meetings

The next meeting will take place at the end of April / early May. Priorities for next meetings include:

• look at redrafted CMO / CNO letter

• consider communications
• further update on the information hub, leaflets, the audit and Delphi research

AOB and close

No other business was raised.

The Chair thanked members for attending and closed the meeting.