Social Security Experience Panels - Seldom Heard research programme: carers and care experienced

This report presents the main findings of the first wave of research with carers and care experienced people as part of the ‘Seldom Heard Voices’ research programme.



In 2017 Social Security Scotland set up Experience Panels to help in the design, delivery, oversight and review of Scotland’s new social security system. These panels are made up of over 2,400 people who have experience of at least one of the benefits that have been, and will be, devolved to Scotland. As hard to reach and marginalised groups are less likely to be visible in the Experience Panels, we have set up a programme of research for ‘Seldom Heard Voices’ to ensure these voices are included in the design of social security services.

There are four groups identified as ‘Seldom Heard’ in this research. They are Mobile Populations, Vulnerable Groups, End of Life; and Carers and Care Experienced. For each group two waves of fieldwork are being undertaken.

This is the report for the first wave of the Carers and Care Experienced strand. The group is divided into the following sub-groups: care experienced; kinship carers, foster carers and adoptive parents; single parents; and young parents.


People from the carers and care experienced strand found information of benefits from a range of sources such as third sector organisations, online searches, word of mouth, benefit staff, public sector workers and health practitioners. Benefits they frequently applied for were Universal Credit, Child Benefit and disability benefits.

Some people from this strand highlighted positive experiences of support and guidance from third sector organisations, public sector workers and health practitioners. On the other hand, mixed experiences were highlighted concerning support from the Department of Work and Pensions (DWP) and Job Centre Plus staff.

This report highlights key barriers and challenges in accessing benefits faced by Carer and Care experienced strand people, as identified through analysis of survey responses, focus groups and qualitative interviews. The report also discusses enablers or potential improvements which may support increased benefit uptake among this group.

Summary Findings


The research findings suggest that people from this group had difficulties accessing information on benefits. Lack of knowledge of the benefit system and of entitlement for specific benefits were experienced by many. They reported a lack of information and even misinformation of benefit eligibility based on their individual circumstances. Some even reported that information was not readily available or streamlined when they actively liaised with official government agencies.

People from this group also noted negative attitudes towards them when communicating with benefit advisors, work coaches and public sector workers. This was particularly the case when communicating with DWP and Job Centre Plus staff. These experiences led to many feeling stigmatised, judged and discriminated against.

A further challenge was faced when trying to complete application forms. Several reported that the structure and the wording of the application forms were prescriptive, complex and long. The closed (tick-box) questions did not allow them to convey the nuances of their particular circumstances. A few said they did not understand the language or jargon that was required to complete the forms correctly.

Disability Living Allowance and Personal Idepedence Payment application forms were highlighted as the most complex and difficult forms. Many reported that the long rigid format did not allow them to convey the fluctuating and nuanced nature of long-term and chronic health conditions.

Some told us that health assessments triggered stress. The main difficulties with the assessments were: the environment of suspicion, the restrictive nature of the questions and the assessors lack of qualifications meaning they could not identify the nuance of some health conditions. A few were critical of the frequency of reviews for conditions that were unlikely to change.

Long waiting times for award decisions and payments, changes to eligibility, interactions across benefits and overpayments led to a detrimental impact on household finances for some. This includes experiences such as getting into debt, rent arrears and the need to use foodbanks. In a few cases, these difficulties led to some experiencing constant stress and the intensification of mental health problems.


Positive experiences (enablers) and views on how the benefit system can be improved were identified by carers and care experienced people.

People from this group suggested that having a range of choices to get information, apply for benefits and to find guidance would improve access to benefits as it would take into account the different communication needs of different groups and their circumstances.

Many stressed the need for information on eligibility criteria, in particular, and for application processes to be consistent, comprehensive, clear and easy to understand. Several suggested that application forms should be worded in plain English, should be shorter with reduced duplication of questions. Many respondents and participants stated that forms should be designed with more flexibility so that clients can convey their specific circumstances. The information provided from agencies, public services and third sector organisations should be consistent following a joined-up approach.

Several highlighted the need for staff of benefit agencies to be appropriately trained in order to have a comprehensive understanding of benefits and interactions across benefits. People wanted interactions with benefit staff to be based on a friendly, respectful, compassionate and empathetic approach.

Some suggested that health assessments should be carried out by medical professionals who have an appropriate understanding of long-term physical and mental health conditions. A few argued to reconsider the frequency of assessments for clients who have long-term conditions which are unlikely to change.

Some carers and care experienced people suggested that to simplify, prevent duplication and streamline benefit application processes, relevant information from the client should be stored.

Some suggested shortening waiting times between application and payment could help clients to avoid financial difficulties. Others mentioned that some flexibility around or a respite period for those experiencing changes in benefit entitlements could avoid people falling into difficulties.

Third sector organisations contributed to positive experiences with the benefit system. They are perceived as a good source of clear and comprehensive information.



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