People living with HIV to shape new social security system

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Wednesday 19th July 2017

Ahead of the establishment of Scotland’s social security agency, the Scottish Government has committed to listening to the views and experiences of people who are currently accessing or may access benefits to shape the new agency. Through Experience Panels, the government will provide a platform for more than 2,000 people to share their experiences and views. HIV Scotland promoted these panels to people living with HIV as an opportunity to ensure that HIV is better understood within the context of social security.

HIV Scotland spoke to two people living with HIV who shared their reasons for applying and what they hope the Panels will change:

“I joined the Social Security Experience Panel as I felt it was a good opportunity to have input into forming the new system. Scotland getting the power to control these benefits is fantastic, provided it is done correctly and not make the mistakes that Westminster have done repeatedly over the years. Thankfully, the Scottish Government are consulting the very people that have the knowledge and experience, us, the recipients of Disability Living Allowance (DLA) and Attendance Allowance etc.

I hope, with our guidance, that the new system can be more user friendly, more compassionate and sensible, where people are listened to and judged on their own merits rather than on a set of fixed criteria that would stop them from receiving a benefit even though they have a legitimate claim. There are many forms of disability and not all of them are visible.”


“Finding support services that offer constructive help, especially with translating my experience of living with HIV into a language that communicates effectively with the welfare assessors (who must also have a difficult time deciding on individual cases) has not always been easy. And why should our voices need to be interpreted at all? This has felt distorting and alienating. The face-to-face interviews with someone who may have little, incomplete or outdated knowledge of HIV only makes things even more difficult. The current system simply seems prone to fail us.

So, when I saw the government was inviting people who claim welfare benefits to participate in improving this system, through Social Security Experience Panels, I applied to join: it feels important that if we want the reality of living with HIV to be addressed we have to speak up. That said, while stigma around HIV remains, confidentiality is key for me as far as taking part is concerned, and I will need to feel sure that my privacy will be respected.

Ultimately I would like to see the whole welfare process become as simple, transparent and fair as possible, accurately and respectfully responding to the reality of everyone's health conditions, with no one feeling alienated or degraded by the process of trying to access the help they need. There is a long way to go with this, but getting involved with the Experience Panels at least gives us the chance to have our voices heard. We then have to trust that the right people will listen and act.”