Lisa Holden
Just knowing that I am connected to a bigger picture is so important.
Knowing I am not alone in my lived experience of claiming Universal Credit and all the trials and tribulations that this has brought into my life helps me to work hard to not give up on living altogether.
I work hard to raise my daughter as best as possible as a lone parent.
I work very hard to keep on believing that I can be a fully functioning citizen in a country that claims to be one of the most advanced democracies in the world.
Will I ever pay tax again? This is a constant question that runs through my mind as I accept the DWP benefits each month. If I could ever work enough hours to be earning more than the UC allowances, then I would be able to stop claiming Universal Credit. No idea if that is ever going to be possible, but at age 57, I am starting to give up on ever being able to ‘get off benefits fully’. It seems highly unlikely I will ever pay tax again. This is soul destroying for me as it renders me a dependant on state handouts potentially forever.
I am slowly coming to terms with this likely future status. A long-term benefit claimant, taking from the system…a benefit scrounger? A lazy good for nothing lay-about? A feckless poor person? This is how the media describes ‘people like me’.
I hope I am not seen in this way by people that know me.
My involvement with the Health Creation Alliance led to my getting involved in the Public Patient Involvement work with Tees, Esk and Wear Valley NHS Foundation Trust, which then led to my connecting to the DWP researchers and all the subsequent ‘health creating Public Involvement & Community Engagement (PICE) work’. I hope this is enough of a contribution to the society that I am still trying to be part of. A society where the less fortunate are looked after by the more fortunate. A society that cares for everyone based on a basic sense of equality and humanity for all. I hope I am seen as an equal.
I am coming to terms with the idea that I am contributing to society as a person with lived experience of poverty, trauma and discrimination. I am reframing this status to a more positive one – a Health Creating PICE ‘worker’. I do this in return for state benefits.
The word ‘payment’ is used on my monthy UC digital claim ‘payment’ page. I have discussed this word with many work coaches over the years I have claimed benefits. ‘My’ work coach really helped me come to terms with my shame and embarrassment at feeling like I am being ‘given a monthly handout’. She was a good example of a firm but fair ‘agent’ as they are called. All the human and digital agents/work coaches that I have encountered have been kind and generous with me. I have been open and honest with them – my journal is a great read for any DWP analyst!! Many would remind me to check my UC commitments so as to avoid sanctions. Most reminded me that I have a legal entitlement to state help. The help I received to ‘increase my earnings’ and fulfil my commitments was second to none. It was just that nothing worked for me to return to full time tax-paying employment. Partly due to where I live, but mainly due to the fact that I was struggling to be a good enough lone parent whilst coping with my worsening mental health. Surviving claiming Universal Credit is exhausting and that’s with all the help I have received. Its life threatening if one doesn’t have the help from DWP agents that I was afforded.
Long term benefit claiming has a severe and enduring effect on one’s self worth and confidence. After many years of trying to return me to the world of full-time paid work, my work coach and I decided that I needed to consider gaining Limited Capability for Work status. We were both relieved when I finally passed my LCWA (i.e. Limited Capability for Work Assessment). This new label gave me the confidence and permission to do more volunteering work in my local community. It helped me to feel more entitled to say I am person a low income and not feel as much crippling shame or embarrassment. I was finally able to start to work on my mental health issues and try to fix myself up to contribute as best I can to my local community. I can now more fully focus on waiting for my health care assessments and treatments in a more productive way. I can now wait well and not feel I am regressing. Sharing my lived experiences of the highly complex and often difficult to understand digital Universal Credit benefit system is finally being of use.
The Department for Health and Social Security was maybe something we should not have broken up. The ‘Health’ was partitioned off in the late 1980s. It clearly needs to be re-connected. The NHS really needs to be much more integrated into the now named Department for Work and Pensions. Housing is another key issue to remember. Cross sector working must be developed with service users and service providers sitting together as equals. Customer insight can easily be gathered at every job centre in the same way patient participation groups (PPGs) gather information from GP surgeries. Face-to-face customer/claimant insight drop-in groups could be created easily, with claimants helping to facilitate them. Customer/service user insight is glaringly missing in current DWP reform. It is not too late to act. Fully co-produced insight groups such as those advocated by RETHINK and The Health Creation Alliance, could, if given funding to implement, go a long way to shed light on how to do things with people and not for people. My experiences with my work coaches in a small rural coastal area could be looked at as a model for how to do things with UC claimants. Co-working with claimants/service users is the only way to develop cost effective relevant reform. More freedom for work coaches to let people do up to half of their work search as volunteering would be a good place to start. If only someone, somewhere, could upgrade the decision makers handbook to give work coaches more discretion to help claimants to even know this is an option.
I invite readers of this blog to get in touch with me via the researchers as I am always available to share my story, over and over again if needs be. This seems to be the only way to ensure my contribution to welfare reform in the current climate is heard, I am like a broken record. Thank goodness the researchers can hear what I am going on about.
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Image credit: Ravi Palwe via Unsplash.
For more co-produced insights please see: Home | UC CREATIVES
More information about the original workshop related to this blog can be found here: https://sticerd.lse.ac.uk/case/_new/research/lived-experience/