Ill Health and Disability Benefits Stakeholder Reference Group minutes: August 2025

Attendees and apologies

Meg Sydney, Chair, Scottish Government
Nathan Gale, Scottish Government
Suzie Gilkison, Scottish Government
Joseph Scullion, Scottish Government
Angela Munro, Scottish Government
Allan Faulds, the ALLIANCE
Ed Gordon, COSLA
Erica Young, Citizens’ Advice Scotland (CAS)
Gerard McFeely, NHS Lothian  
Gill Young, Places for People
Ian MacCorquodale, Glasgow Disability Alliance
Kirstie Henderson, The Royal National Institute of Blind People (RNIB)
Moira Escreet, Child Poverty Action Group (CPAG)
Neil Gibson, Social Work Scotland
Richard Gass, Rights Advice Scotland

Apologies

Duncan McIntyre, Chair of the Learning Disability Practice Network
Dr Emilia Crighton, NHS
Grainne McGinn, Inclusion Scotland
Jim Hume, Support In Mind Scotland
Margaret Kene-Dickson, Public Health Scotland
Dr Padmini Mishra, Scottish Government
Pauline Nolan, Inclusion Scotland

Items and actions

Welcome

Chair, Meg Sydney, welcomed members to the 30th meeting of the Ill Health and Disability Benefits Stakeholder Reference Group. 

General updates

The Chair updated the group on Pension Age Disability Payment.

Pension Age Disability Payment completed the pilot phases and launched nationally on 22 April.

Case Transfer is ongoing, with over 165,000 people moving across. Progress shows Social Security Scotland are currently on track to meet the ambitious target of commencing the transfer of all awards from Attendance Allowance to Pension Age Disability Payment by the end of this year.

The Chair informed members that it has been a smooth benefit launch, and the experience has reportedly been very positive from conversations with Social Security Scotland and wider users. The next key statistics will be released in September. 

Around September, there will be a television advert promoting Pension Age Disability Payment which will encourage people who are eligible to apply. 

Update on disability benefit award reviews

Officials gave an update on disability benefit award reviews, and the work following an action point in the Scottish Government’s Fiscal Sustainability Delivery Plan (FSDP). 

Officials shared recent analysis of published reviews data for Adult Disability Payment (ADP) and comparisons with Personal Independence Payment (PIP). The data was broken down into all reviews, planned reviews and change of circumstances triggering an unscheduled review. Officials noted that direct comparisons with PIP data is challenging, especially when considering how many PIP review decisions are later changed. This needs to be considered in any comparisons.

Officials shared that Social Security Scotland has Quality Assurance processes in place to support accurate, consistent decision making including at review. This is helpful to identify opportunities for improvements in the system. Officials noted the continuous improvement that has been carried out to date impacting on reviews, and planned improvements being taken forward in future.

Officials noted that, although it is early in delivery, the Scottish Government has committed to considering how well the reviews processes are working, including whether wider improvements are needed. Work with Social Security Scotland to better understand how award reviews have embedded has supported in identifying areas being explored further.

Officials shared four areas that were early in scoping covering changes to the review form itself, how supporting information is used at review, multidisciplinary working and setting review periods. Officials invited the group to give their initial views around these possible adjustments to the reviews process. The group were also invited to consider further after the meeting and follow-up with their views to officials. 

Members asked whether it was felt that there should be a higher level of reduction in awards. The group suggested that it could be frustrating for those who have a condition which will never change to be asked for supporting information at every planned review. 

Officials noted there is no target on how many client’s awards reduce at review, as review decisions are based on entitlement to assistance. Officials were clear they will be considering the impact of supporting information at planned review on all clients, including those with needs that are highly unlikely to change.  

Members were positive about developing the review form to include a free text box as a space to provide an update, including where the client was not reporting a change. They noted this would give better opportunity for people to discuss their current needs. Members stressed that, for this to work well, examples on how to complete the box would be helpful. Members felt that extending the form to have clients input all their needs, as they do when completing a new application, may cause distress and be an administrative burden for people with no changes to their circumstances – offering little advantage.  

Members suggested that for supporting information, changes could be targeted to individual cases and what information may be missing. They felt any changes in this area would be fairest if they were appropriately targeted. Members also discussed how, for reviews, the client could have more control over requesting client consultations. They talked about the benefits for some people to sit down with a specialist at Social Security Scotland to discuss their circumstances in a format that works for them. 

Members shared that those who are severely sight impaired will likely never get better, so any change in entitlement at review would be highly unlikely. If a person receives a review form, it needs to be in an accessible format, putting pressure on people applying as well as services. As an example, some may have seen a professional ten years ago and there is no treatment so would not be able to give recent supporting information from a professional. Others are on waiting lists to see a professional so would not be able to give a recent practitioner letter. 

Some members expressed an interest in feeding into changes to guidance on award reviews if the opportunity arises. Officials welcomed having the views of stakeholders if guidance is to be changed. Officials noted the impacts raised for people with conditions that are unlikely to change and noted that decision makers could possibly benefit from more guidance on specific conditions to aid them in their decision making. 

Members said that they would not like to see laborious supporting information having to be provided for reviews as this would duplicate the work done gathering this for the initial application and make people feel they were putting in a new application each time, especially for those who have long term conditions. A free text box was noted as the best idea as this would cover specific circumstances. The group also noted that when comparing reviews to the Department for Work and Pensions (DWP) there is a possibility that the Scottish Government are doing things better which will inevitably cost more money. 

Officials recognised members’ views while also noting some scenarios. For example, for those receiving Child Disability Payment, they may report no change, but the initial application was made when they were younger. Although their needs may not have changed these could now be further in excess of what is expected for a child of their age.  

Members added that the level of challenge to review outcomes at the level seen in the DWP system is revealing and administratively costly, while also being harmful to individuals.

Members said that the multidisciplinary approach to working is important, particularly when approaching awards with no review period and noted that the system is grounded in a person centred approach. When assisting people with making an application, health professionals would provide a supporting statement based on their understanding of the individual’s level of need. The group asked what multidisciplinary approach might mean going forward.

Officials said that the multidisciplinary approach relates to internal working between Social Security Scotland employees. For example, decision makers engaging with those with Health and Social Care expertise. It will look at how Social Security Scotland works across teams and removing barriers to doing this to encourage best practice.

Members said there was some confusion with the review pack when people come to services for support. The review pack shows the points you received but doesn’t say why you got these points. People who have moved to ADP from PIP might complete the ‘no change’ declaration and potentially may be getting less points than they should be due to a decision made by DWP before case transfer. A text box could help people to elaborate, for example, in cases where there has been change to one condition and not to another. 

Officials said that the example raised around detail in the review pack may be due to the way the case transfer process operates (for example, if the previous decision was one that DWP had made) and noted the contribution around previous decision making. 

Members asked when people have their planned review, are they sent a copy of the last determination noting this would be helpful to let them identify whether they need to provide any further information. It would also be helpful for people to have guidance on how to make the best of their review. 

Officials confirmed that people receive a copy of their most recent determination as a reminder of their needs at the previous decision to support them to appropriately complete their review form.

Officials thanked the group for their feedback and were clear they would welcome any further points raised in follow up responses. 

Action: Members invited to send further views around the possible adjustments to the reviews process to officials, where possible, by 8 September 2025. 

Discussion on the Independent Review of Adult Disability Payment report

Members were invited to share their first impressions of the Independent Review of Adult Disability Payment final report before officials gave an overview.

Members said they were pleased with the report, stating it is positive to see that the report’s recommendations encourage a move away from a purely medical model of disability towards a human rights based social model.

Officials informed members that the Cabinet Secretary for Social Justice, Shirley-Anne Somerville appointed Edel Harris OBE to chair the Independent Review which ran from February 2024 to July 2025. Over that time, Edel engaged extensively with disabled people in Scotland and with the organisations that represent them whilst an advisory group provided expertise and guidance. The review examined the first year of delivery of ADP, drawing on lived experience and identifying improvements around the eligibility criteria, the decision-making process and client experience. The final report was published on 31 July 2025. 

Disabled people reported that interactions with Social Security Scotland were positive in terms of its compassionate approach. However, the report identified scope for improvement in terms of making the system more accessible and to better meet the needs of disabled people.

The final report presents 58 recommendations on how ADP can be improved. The recommendations have been considered, and advice is now being prepared for Ministers. The Scottish Government has committed to providing an initial response to the report by January 2026. 

Officials gave a high level overview of the recommendations which the final report groups into four categories: A People’s Service, Processes That Work, A Learning System and A Better Future.

The group were invited to share their views on the report and to inform officials which recommendations they believe should be prioritised for implementation. 

Members highlighted recommendations about the 50% and 20 metre rules as a priority, stating they have long called for these to be reformed.

Members said they were pleased to see the points raised by blind and partially sighted people in the review. They enquired on how the recommendations will progress and how best to provide further input.

Officials responded that engagement will be undertaken once the Scottish Government has provided its initial response to the report in January. Nathan Gale’s team will be the point of contact.

Members highlighted a broad range of recommendations they are keen to see prioritised including those which will improve the application process, decision making, eligibility criteria and safeguarding.

Members discussed a number of points related to: 

• lived experience
• subjectivity in the decision making process
• the limitations of previous (DWP) models
• the impact of social contexts (such as poverty)
• societal barriers preventing disabled people from living independently and participating equally in society

It was noted that disabled people’s organisations strongly support an approach based on the social model of disability.

Officials thanked the group for their feedback, noting they will consider points raised at the meeting as well as any shared in follow up emails. 

Action: Members invited to send thoughts around the Independent Review of Adult Disability Payment final report by 8 September 2025. 

Action: Officials to send presentation slides to the group.

Any other business and close

The group had no other business to discuss. The Chair thanked members for attending and closed the meeting.