National Implementation Group for Terminal Illness meeting minutes: 13 May 2021

Attendees and apologies

• Dr Jenny Bennison
• Sandra Campbell
• Dr Teresa Cannavina
• Dr Pat Carragher
• Gordon Dawson
• Susan Webster
• Donna O’Boyle
• Dr Mini Mishra
• Meg Sydney
• Paul Knight
• Shonagh Martin
• Wendy Rizza
• Lisa Cresswell
• Sharon Hotham
• Jamie Macdonald

Apologies

• Dr Linda de Caestecker
• Rod Finan
• Nathan Gale
• Margaret Grigor
• Iain Macritchie
• Helen Malo
• Jo McKay
• Richard Meade

Items and actions

Welcome and introductions

The Chair welcomed members to the seventh meeting of the National Implementation Group on Terminal Illness (NIG).

Update on actions from last meeting

A member requested a change of wording on page 4 of the previous minutes. The use of ‘private GP practice’ was to be changed as it’s incorrect. Officials agreed to work with members to clarify wording.

The minutes from the previous meeting were agreed and formally approved by the group, with the amendments requested.

Officials confirmed that the actions from the previous meeting have been completed.

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

BASRiS forms

• DWP will be able to use the information on BASRiS forms, for Scottish clients accessing reserved benefits, to assess whether someone is terminally ill, according to DWP rules. This will improve the communications that can be sent to clinicians

• this means where a BASRiS has already been completed clinicians won’t need to also complete a DS1500 so that their patient can access reserved benefits including UC and ESA. Members welcomed this change

• changes to communications on this in advance of Child Disability Payment pilot have been agreed with DWP
• updates will be made to the CNO/CMO letter and the FAQ’s to reflect the change

Amendments made to the BASRiS form, highlighting details (as included in section 7 and 8 of the CMO guidance) which must been included on the BASRiS, were agreed with the NIG at meeting 5. It was following this change that DWP are able to use this information to assess against their own definition. Officials confirmed that there has been no change to section 7 of the guidance.

Framework for audit

• this has been updated and is now ready for publication on SHOW website
• there were minor changes made with regard to updated timelines

CMO guidance updates

• the harmful information feedback loop has been added to page 22
• information on where to post a BASRiS form has been added to page 17
• links to the Nursing Midwifery Council and the Royal College of Nursing guidance have been added
• information on claiming a fee has been updated on page 23
• more information about supporting documents has been added to Annex H. This will include links to the Information Hub, FAQs, information leaflets and information on the Clinical Helpline
• outstanding changes include adding the sample BASRiS form (Annex D) and sample Fee Payment form (Annex I)
• information regarding the DWP using the BASRiS form for reserved benefits now needs to be updated
• the CMO guidance and the FAQ are due to go to publishers at the end of May, 5 weeks before the Information Hub goes live

Action point 1: officials to change wording of “private GP practices” on page 4 of the previous minute.

Action point 2: officials to update the CMO / CNO letter, the FAQs and the initial alert, in relation to the change that the DWP will now use BASRiS forms for reserved benefits.

Fee for completion of BASRiS form – update

Officials updated the group on who is eligible to claim a fee.

Independent and private GPs, as well as GPs and RNs employed by the GP practice, can submit a claim on behalf of the GP practice.

RMPs and RNs who are employed by a third sector organisation (for example a charity) can submit a claim on behalf of that organisation.

Details of when a fee can be claimed by other medical staff are contained in the Terms and Conditions for Medical Staff in Scotland.

Members welcomed the change that those employed by the third sector would be able to claim a fee on behalf of that organisation.

Officials also updated that fee rate discussions with SGPC are continuing and officials have a meeting at the end of May regarding this.

Dissemination and communication plan

The Chair gave members an opportunity to give final comments on the CMO/CNO letter to all RMPs/RNs.

Officials requested suggestions of third sector organisations that the CMO/CNO letter should be sent to. Members suggested officials contact Edinburgh Voluntary Organisations Council (EVOC). Members also suggested the letter is sent to all current and previous members of this group, and the members of the previous working groups (Short Life Working Group on Terminal Illness for Disability Assistance and Terminal Illness Stakeholder Reference Group). Members can email any other suggestions to officials, including contact details for the organisation.

Officials updated that Disability Benefits Policy will give a presentation at the Heath Boards Communication Leads board meeting on Tuesday 25th May. The presentation will include a brief overview of the changes being made and the new process, with endorsement of the CMO guidance; clear information on when the change comes into effect (and for whom); an overview of the material being developed to support clinicians; and information on the stakeholder roadshows, which will be held in late June.

Officials have drafted an initial alert for Primary Care Leads. This will also be sent to Communication leads, Health Boards and Joint Officers of International Joint Boards. The content has been taken from the CNO / CMO letter. It will highlight the changes coming. It is intended that this will be sent in early June. Officials asked whether members think it would be helpful to send this to third sector organisations as well.

Members flagged that information regarding DWP using the BASRiS form needs to be updated in the initial alert.

Officials updated on communications regarding the Child Disability Payment pilot.

The initial update will highlight the pilot and who it affects and information about the pilot has been made more prominent in the CMO / CNO letter. The Information Hub will have a section where clinicians can quickly ascertain if they should complete a DS1500 or BASRiS. There will potentially be a second stakeholder roadshow event in week beginning 19 July targeting RMPs and RNs in pilot areas (and those working with children resident in pilot areas). This would take place after the distribution of the CMO / CNO letter. All roadshows will be recorded and made available to watch after the event. Members flagged that the stakeholder roadshow event would be during the school holidays which could reduce the number of stakeholders available to attend.

Members were given the opportunity to provide feedback on Social Security Scotland’s SRTI communication plan for Child Disability Payment pilot. Members can provide feedback by email as well.

Leaflets

Members agreed that the wording of the leaflets is very good. The information included is very helpful and provides a good summary. The leaflets are quite plain and text heavy, pictures could help to draw people in. Officials explained that the leaflets follow a brand style and have been designed to be plain and simple. The leaflets are still to go for user testing, so these are not necessarily the final designs.

Officials confirmed that they have a commitment to inclusive communication so the leaflets will be available online, in Braille, in different languages, and BSL videos will be available. It was raised that physical leaflets are being used less as a result of Covid. Members agreed that although the online leaflet will be used more, and GP practices can send a patient a link to this, not all GP practices have the ability to text patients links. As well as this, some patients may not have access to the internet and they may not be IT literate, so physical copies should still be available. Officials clarified that leaflets will be printed and sent out upon request.

Members suggested changing the wording under “Who can complete a Benefits Assessment under Special Rules in Scotland form?” as not everyone is involved in the diagnosis. The group agreed to change this to the wording used on the BASRiS form, which is “involved in the diagnosis and/or care of the patient’.

Members felt that the practitioner leaflet would be helpful to go out to stakeholders, in either leaflet form or as a word document.

A direct link to the online leaflets would be more useful than the mygov.scot link. Officials will feed this back. Officials confirmed that the link to the leaflets will be included in the CMO guidance.

Officials invited members to take part in user testing of the leaflets. This can be as a practitioner or as someone providing support to someone accessing Child Disability Payment. User testing will be done w/b 24 May 2021. Members are to send their details to officials if they are interested.

Action point 3: officials to update leaflet wording to “involved in the diagnosis and/or care of the individual”

Action point 4: members to contact officials if they are interested in participating in user testing for the Leaflets for Child Disability Payment

Service design update

Update on distribution of forms

Officials are working with NHS to organise a process for the distribution of the BASRiS forms. The forms will be distributed through the current GP practices and processes that are used for distributing prescription forms. To get prescription forms GP practices must be registered with the local health board. It will prevent fraud and means practitioners can use a process that they are already familiar with. The group raised concerns about how other organisations, such as support organisations and private sector organisations, will get BASRiS forms as they are not required to be registered with any health board. Officials will find a method of distribution for organisations not registered with the health boards. If an easier solution is not found, organisations will be able to order forms directly from Social Security Scotland.

There is clear guidance on how to order prescription forms for GP practices and this can easily be amended for BASRiS form orders. The guidance is very straight forward. Officials are still waiting for confirmation on doing this.

Officials confirmed that BASRiS forms won’t be specific to one person. They will have an identifier of the GP practice the form was sent to, but anyone in that GP practice can use it.

Officials clarified that if someone has applied for disability assistance under special rules but a BASRiS form hasn’t been received, Social Security Scotland would contact the healthcare professional named on the application to take the BASRiS information over the phone. This means a client’s application won’t be delayed because there is no BASRiS.

Update on information hub

All special rules resources will be stored under the guidance and resources section on the Social Security website. The list will be under a friendly URL, which is currently planned to be SocialSecurityScotland.gov.scot/terminalillness. This is consistent with the terminology already used and reflects what is used by DWP. Officials welcomed feedback from members on this. The URL will be included in the CMO letter, and there is an option to have this on the leaflet as well. Members agreed that this will be helpful.

Update on clinical helpline

Officials confirmed that when a clinician phones the helpline and it is not a query that a client advisor can answer (for example one of the FAQ questions / where they post a BASRiS to) but they require to speak with an agency practitioner this will be a direct handover as long as an agency practitioner is available. If one is not available a call back will be arranged at a time that is convenient for the clinician. There won’t be a high number of practitioners in Social Security Scotland during the Child Disability Payment Pilot so there is a possibility that all practitioners will be busy.

Officials asked for suggestions of questions that clinicians may ask a Social Security Scotland practitioner to help with training.

Members suggested that initially clinicians may call for support with completing the BASRiS. Officials agreed that this is likely, however as previously agreed practitioners won’t be able to answer specific questions regarding the patient.

Officials asked whether the section of the form on consent is clear enough and if this could be something clinicians will call the helpline for support with. Members agreed there could be confusion around the transition from 16 to 18 year olds for adults with incapacity and vulnerable adults. Officials will put together guidance on this for Social Security Scotland practitioners.

Action point 5: officials to find an alternative process of form distribution for organisations that aren’t registered with the local health boards.

Action point 6: officials to create guidance for Social Security Scotland practitioners about the consent section of the BASRiS form.

Agree priorities for future meetings

Priorities for the next meetings include:

• digital BASRiS
• clinical helpline
• communications
• Child Disability Payment Pilot
• Adult Disability Payment Pilot
• Delphi research

Future dates

Officials proposed a meeting in late June 2021. Members agreed.

AOB and close

Officials confirmed if members were happy to have the leaflets added to the website with a link included in the CMO guidance. The group agreed, however physical copies must be available too for people who aren’t IT literate or don’t have access to the internet.

Officials confirmed that the Adult Disability Payment pilot will take place in Spring 2022.

The Chair thanked members for attending and closed the meeting.