National Implementation Group for Terminal Illness meeting minutes: 22 June 2021

Attendees and apologies

Attendees

• Dr Linda de Caestecker, Chair
• Dr Jenny Bennison
• Sandra Campbell
• Gordon Dawson 
• Susan Webster
• Donna O’Boyle
• Dr Mini Mishra
• Meg Sydney
• Christopher Shepstone
• Lisa Cresswell
• Sharon Hotham
• Rod Finan
• Margaret Grigor
• Jo McKay
• Richard Gass
• Claire Pullar 
• Winnie Miller
• Kayleigh Henry-Ellis
• Michael Davidson
• Lesley Kelso

Apologies

• Helen Malo 
• Paul Knight
• Pat Carragher
• Nathan Gale
• Richard Meade

Items and actions

Welcome and introductions 

The Chair welcomed members to the eighth 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 actions 1 to 4 from the previous meeting have been completed. An update on actions 5 and 6 was provided as follows:

Action 5: officials are still working on developing an alternative process for Benefits Assessment under Special Rules in Scotland (BASRiS) form distribution.

Action 6: officials are in the process of developing guidance for Social Security Scotland practitioners on the clinical helpline regarding the consent section of the BASRiS form. 

Officials provided further updates on ongoing developments:

Final versions of the factsheet for clinicians and leaflet for patients are not yet available to share but these will be included on the Information Hub prior to its launch.

Fee rate for completion of BASRiS forms

Officials had discussions with the Scottish GP Committee (SGPC) regarding the fee rate for completion of the BASRiS form. The SGPC agreed to align the fee rates for now as their members have no experience of using the new BASRiS form. Once the digital systems are operational and their members have become conversant with the new forms, should they feel it is needed, officials are open to looking at the fee rates again. The guidance has been updated to reflect the fee rate of £17 for the BASRiS form.

Chief Medical Officer (CMO) guidance

Officials noted slight changes to the CMO guidance that were required in finalisation prior to publishing. This includes: 

• in the executive summary on page 4, there has been a change of wording from ‘is expected to take account’ to ‘must take account of section 7 of the guidance’ following a request from the Chief Nursing Officer (CNO)
• the flow chart on page 6 has been expanded to include legal/formal representative, as well as patient, who can apply for disability assistance through the standard route as requested by the CNO
• Annex D and Annex I now have PDFs of the actual watermarked BASRiS form and Fee Payment form

Officials are aware that a correction is required on the Fee Payment form (Annex I) to show the date of the BASRiS form rather than date of consultation. 

Action one: officials to correct Fee Payment form accordingly and update CMO Guidance (Annex I) when possible.

Action two: links to appropriate webpages on Information Hub need to be included in CMO Guidance Annex H (Further Supporting Information).

Dissemination and communication plan

Officials met with Communication Chiefs of Health Boards on 25 May to provide an overview of the changes and request their support in communicating the message to the frontline. A copy of the presentation was provided which could be used in onward communications in their areas. This was well received and they are happy to support.

Timeline of communications

The initial alert will be sent to Primary Care Leads (PCLs), Communication Leads (CLs) of Health Boards (HBs) and Chief Officers (COs) of Integrated Joint Boards (IJBs) on 28 June. This initial alert will be disseminated to all Registered Medical Practitioners (RMPs) and Registered Nurses (RNs) from within these organisations in the week beginning 5 July.

The CMO/CNO letter will be disseminated to all RMPs and RNs (via PCLs, CLs of HBs and COs of IJBs) in the week beginning 12 July. It will also be circulated by members to their networks such as palliative care and welfare advisers.

Social Security Scotland will hold a stakeholder roadshow aimed at those in HBs and Local Authorities. This will take place on 14 July and details will be included in the initial alert.

A reminder alert will be sent to all RMPs and RNs within the local authorities (Dundee City, Perth and Kinross, and the Western Isles) that the pilot is about to go live in the week beginning 19 July. 

Members raised a concern regarding the timings of communication with adult organisations. While they recognised the value of communicating changes, there was a worry that information would be lost given the launch of Adult Disability Payment is not until next year. Officials highlighted the importance ensuring the message is widespread and includes clear information about the staggered timelines to avoid any confusion. Further communications will be sent in advance of Adult Disability Payment.

Action three: officials to send initial alert to group on week beginning 5 July and the CMO/CNO letter after issue on the week beginning 12 July. 

Action four: officials to follow up with relevant members unable to attend to ensure they can still disseminate in their respective areas, and to find someone to disseminate through the Paediatric End of Life Care Network (PELiCaN) and the Children’s Commission Groups.

Adult Disability Payment pilot

Officials provided a brief overview of the plans to pilot Adult Disability Payment and welcomed the thoughts and views of the group. 

Current plans for the pilot include launching Adult Disability Payment in spring 2022 initially in three local authority areas for new applications for three months. Following this, new applications for Adult Disability Payment will likely be extended to additional areas. This would be followed by the full national launch of Adult Disability Payment which will include case transfers.

Scottish Government has committed to there being no further Personal Independence Payment (PIP) assessments after the national launch, therefore a reward review or change of circumstances would trigger a transfer to Adult Disability Payment. 

The areas where the pilot will launch haven’t been confirmed and this is still under review. 

Officials advised they are committed to ensuring the service is launched safely throughout Scotland and based on the modelling, this is the safest approach. Adult Disability Payment is similar to Child Disability Payment both in terms of design and delivery approach, so lessons will be learned from Child Disability Payment that result in tweaking for both the pilot and national launch of Adult Disability Payment. 

The chair asked members if there were any questions or feedback.

Members flagged that there will be adults on Disability Living Allowance (DLA) migrating to the Scottish benefits system, and there is a risk they may apply for Adult Disability Payment which could negatively impact their entitlement. Officials agreed and highlighted the importance of communicating to individuals and agencies throughout Scotland so that the right messages get to the right people to allow them to make informed decisions.

Members asked when discussions on the specifics of Adult Disability Payment will feed in to the group and at what stage, as they are keen to ensure there is enough time to respond to any requirements. Officials explained they were opening a dialogue with the group early in the process so that they can have discussions and ensure the appropriate mechanisms are in place.

Members flagged concerns regarding welfare rights officers who have advised that some people with Motor Neuron Disease (MND) have been struggling to secure DS1500 forms for PIP. Other members echoed concerns on this and said that this could be down to individual clinicians as opposed to something that is widespread. The Chair suggested members have a discussion on this outwith the meeting to see if there was a solution that could be found.

Members asked if there had been any consideration for including all individuals who are terminally ill in the pilot rather than a purely geographical launch for Adult Disability Payment. Officials advised the current approach is a geographical pilot. There is extensive modelling still being carried out on the approach, and it is important to balance the risks.

Delphi analysis 

Officials provided a presentation on the findings of the Delphi analysis, which is trying to calculate approximately how many more people will be eligible for disability assistance through the new terminal illness guidance.

The Delphi technique was used as a way of analysing the opinions of experts who will use the guidance and then use this data to come up with estimates.

Following the presentation the Chair asked for any questions or feedback.

Members urged caution on the frailty figures, adding it was important to note that frailty is only considered in combination with one or other co-morbid condition. The chair highlighted the importance of making the guidance and advice for people as clear as possible including on frailty.

Officials advised about the information that has been used to come up with internal estimates of projected numbers who will receive disability assistance because they are terminally ill and consequent impact on budget. The analysis, including estimated numbers of individuals who will receive disability assistance through the new rules, will be published this summer.

The impact on expenditure will be published by the Scottish Fiscal Commission in their forecast figures scheduled for the end of August. The Delphi analysis has already been shared to inform their projections.

Action five: alert members and provide a link when the Delphi analysis has been published. A copy of the slides will also be circulated at this point.

Service design update

Update on BASRiS form distribution 

The BASRiS forms will go for printing tomorrow and the initial batch will be distributed to 97 addresses including hospitals, hospices and GP practices in advance of the pilot of Child Disability Payment. Hospitals and hospices will receive a batch of 50 forms and other organisations will receive 20.

Officials have been in touch with Scottish Government’s Health and Social Care Directorate to develop a process for the reordering of the forms. It is intended that when moving from the pilot to Child Disability Payment national launch reordering will be similar to other health forms that have value.

Members raised concerns around how health directorates would be able to distribute forms for Adult Disability Payment as the process may not be in place for this. A further point was raised suggesting responsibility could fall to National Services Scotland (NSS) to distribute. Officials advised they have reached out to NSS and they have confirmed they have not been funded for the distribution, and they believe that Scottish Government’s Health and Social Care Directorate need to clarify the process for the distribution of BASRiS forms. They hope to have an answer on this soon.

Update on the information hub 

Officials shared that there will be 8 pages on the ‘Hub’ of information. These will include the CMO guidance, FAQs, leaflets, information on how to request and submit a BASRiS form, and information on the clinicians helpline. The CMO/CNO letter will be added once distributed. 

All the pages should be ready for 5 July – clinicians will be directed to this following the dissemination of the CMO/CNO letter.

Action six: links to be included to the Information Hub in the CMO guidance and the CMO/CNO letter before they are issued.

Agree priorities for future meetings

Priorities for the next meeting include:

• feedback on the Child Disability Payment pilot
• development of the Adult Disability Payment pilot
• communications for Child Disability Payment national launch
• BASRiS form distribution – specifically plans for Child Disability Payment national launch

Future dates

It was agreed the next meeting would be held in late August or early September.

Any other business and close

Officials explained that the managed consultation to gather views of relevant professionals on the CMO guidance would be published to align with the publication of the CMO guidance.

The Chair thanked members for attending and closed the meeting.