Social Security Experience Panels: Seldom Heard research programme: wave 2 report - visual summary

The visual summary provides an overview of findings from the main report for the second wave of the “Seldom Heard Voices” research programme. It includes findings from the Vulnerable Groups, End of Life, Carers and Care Experienced, and Survivors of Abuse strands.

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Social Security Experience Panels: Seldom Heard Programme of Research: Wave 2 report


The Experience Panels were established in 2017 to help design a social security system that works for the people of Scotland. Members have experience of at least one of the benefits delivered by the Department for Work and Pensions (DWP) that has come to Scotland.

We recognised that there are groups less likely to be represented on the Experience Panels so we set up the “Seldom Heard Voices” research programme. It ensures that groups who need to be treated with particular sensitivity, are marginalised or dispersed have a voice in the design of Scotland’s social security services.

Two stages of research were carried out with ‘Seldom Heard’ groups. There are five groups identified as ‘Seldom Heard’ in the second stage of this research programme: Mobile Populations, Vulnerable Groups, End of Life, Survivors of Abuse, and Carers and Care Experienced.

About the research

This summary sets out the findings from the second stage of research with Vulnerable Groups, End of Life, Survivors of Abuse, and Carers and Care Experienced.

The research included interviews with 67 participants and an online survey with 24 Carers and Care Experienced respondents. The research took place between October 2020 and December 2021.

The research explored experiences and views on:

  • Getting information about benefits,
  • applying for benefits,
  • interacting with government agencies and support organisations, and
  • the future of the social security system in Scotland.

Who took part

The majority were aged between 25 and 54 years old, 56 per cent had a disability or long-term health condition, and 67 per cent were female.

Common barriers

Communication and information challenges

Several highlighted the difficulty of finding information about what benefits they may be entitled to. Some mentioned that this resulted in avoiding start claims, missing out or delaying access to the benefits.

For many the information was unclear, confusing, and contradictory. They mentioned there are various sources of information but it is not clear.

Many highlighted barriers to access information and apply for benefits online because they did not have internet access or digital devices. Others had no experience of using the internet. A few found government websites difficult to navigate.

Many participants felt discriminated and stigmatised against when interacting with benefit staff and when applying to benefits with the Department for Work and Pensions and Jobcentres.

The negative perception towards the benefit system made many participants anxious and stressed when having to carry out benefit processes.

Challenges with health assessments

Many experienced stress and humiliation when attending health assessments. Some thought the process of medical assessments is dehumanising.

Some noted the questions during the health assessment were closed questions based on a tick-box exercise with no room to account for fluctuating health conditions.

Some participants felt that that the views and comments of medical assessors were subjective. They thought that the outcomes of the benefit award decisions were the result of chance.

A few were critical about the frequency of health reviews for some long-term health conditions unlikely to change.

Complex forms and lengthy waiting times

Many felt that the application forms were lengthy and complicated. Some mentioned that the questions were too prescriptive and repetitive. Others felt that the questions were designed to avoid successful claims.

Several participants gave accounts of the lengthy waiting times for various benefit processes. They reported how these waiting times made them experience financial hardship.

Quote from participant:

“I’d say the overall scenario is that you’re coming at it [treated] with total mistrust. From the very start you’re having to prove every single thing, and as someone with an actual disability, it is quite demoralising. If you’ve got access to people’s medical records, it shouldn’t be advisors even though it’s been a few days training online. That’s the message being given to the public: we’re here to make sure you get cut off. […] I believe it’s meant to be confusing; I don’t think it’s a mistake. I think they specifically try to confuse you to make it seem like you’ve failed some sort of test and then they can cut off your benefits.” (Vulnerable Groups strand, homeless participant)

Views on improving the benefit system

Communication and information suggestions

Interview participants and survey respondents had a range of preferences for how to access information, how to apply for benefits and how to get support. These included: online, written information, telephone, and face to face communication.

Many participants highlighted the importance of providing information that is accessible, easy to read, clear and in plain English.

Some participants mentioned that benefit staff should provide guidance and signpost specific services that support the needs of specific groups.

Many participants wanted the benefit staff to be fully trained and have regular updates on the system so they can provide comprehensive information about benefits, interaction across benefits and benefit changes.

Many said that the benefit staff should treat the client with fairness, dignity and respect. Others mentioned that staff need to be empathetic when communicating information and helping people with application processes.

Suggestions for health assessments

Some participants suggested that health assessments should be carried out by medical professionals as they have the expertise to understand physical and mental health conditions and their impact on daily living.

Some mentioned that medical evidence provided by hospitals and General Practitioners should carry more weight for health assessments and award decisions.

A few participants highlighted that the benefit system needs to be designed with more flexibility so individual situations and sudden change of circumstances are taken into account.

Reduce waiting times and support from third sector organisations

Many participants proposed reducing waiting times between application and payment so clients could prevent falling on financial hardship.

Support from third sector organisations contributed to positive experiences with the benefit system. Many mentioned how they were helped by support workers from third sector organisations who provided clear information, completed applications correctly and attended assessments and appeals.

Quote from participant:

“Treat people as individuals, with individual circumstances. There’s no such thing as universal conditions. People have different needs, abilities, circumstances.” (Vulnerable Groups strand, prisoner participant)

Next steps

The Scottish Government and Social Security Scotland will carry out (or has already carried out) actions to address the barriers, and ideas for improvement, that seldom heard groups had.

Insights on access to information and knowledge of the benefit system has fed into the provision of inclusive communication approaches. Social Security Scotland provides transparent and accessible information.

Social Security Scotland offers a range of ways to apply for the benefits they deliver and access support. These include: online, telephone, paper-based, or in person.

The design of Social Security Scotland benefit application forms is developed with people who have experience of the benefits.

Social Security Scotland’s Charter ensures that dignity, fairness and respect are embedded in the new system and in clients’ interactions with staff.

Insights on the key role third sector organisations play in supporting clients is informing engagement with these organisations. This will address barriers to benefit take-up and provide organisations with accurate information about benefits for their clients.

Preferences for face-to-face services fed into the development of the Local Delivery service in local communities across Scotland. This service provides a local presence to meet people’s needs in key locations where clients attend and through home visits.



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