I was made to feel like I wasn’t disabled anymore

‘I was made to feel like I wasn’t disabled anymore’ – The experience of being moved to Personal Independence Payment for claimants with mental health problems: research paper available

Total disclosure: it is such a nice feeling to be able to say, “Our paper is published!” after a huge amount of time spent working on it, and to put a big tick next to something on the (have) ‘To do’ list.

BUT, in this case, the main reason that I am so pleased about it and want to share it here, is because it is an important piece of research that gets right to the heart of our work on health inequalities, and the ‘Health Inclusion’ theme at CHAD. Our work within the Health Inclusion theme focuses on the health and wellbeing of people in Staffordshire and Stoke-on-Trent who may have difficulty accessing universal services and/or may experience complex and multiple disadvantage (you can read more about this here: Health Inclusion – CHAD Research). This piece of research was funded by CHAD through the Small Grants scheme of 2017.

The paper, published in the journal Disability and Society, focuses on the shift from Disability Living Allowance (DLA), to Personal Independence Payment (PIP), and how claimants with mental health problems specifically experienced this change. PIP was introduced in 2013 and is the main non-means tested disability benefit in the UK, aiming to assist with the additional costs associated with disability or long-term health conditions.

As the paper discusses, the shift to PIP developed in response to changing demographics (e.g., an ageing population and increases in mental health problems (Spicker 2017)). Ultimately, it was heavily influenced by the austerity agenda of UK government which has largely dominated since 2010. The desire to save money and reduce the number of disability benefit claimants was clear. Royston (2017, 9) was concerned that the shift places more value on reducing the provision than on the effectiveness of reform ‘and leads to a ‘shrinking disability category’ (Roulstone 2015). This was certainly felt by the people we spoke to for this research, as the following participant quote illustrates:

‘I was made to feel like I wasn’t disabled anymore’ (Dennis)

For our participants, the shift to PIP introduced feelings of uncertainty around what is recognised as a disability for claimants with mental health problems, and how to capture and demonstrate their eligibility on the form. A key change with PIP is that most awards are for a fixed period and subject to review, even for claimants with permanent conditions. This precariousness was also, understandably, a cause of much anxiety about long term security, particularly given that they felt they were “not going to get any better mentally” (Leanne). A related, bigger issue here was that PIP was an essential part of participants’ over all incomes. Not only did it help with disability-related costs (as intended) but also, in many cases, general living costs including food and paying for bills:

‘I do need the extra money from the disability as the other benefits I get are hardly enough to live on.’ (Kevin)

Therefore, the fear of losing their PIP was huge for participants. This also led to anxiety about ‘the brown envelope’ and communications with DWP, that it would be bad news:

‘When you get a brown envelope and you know what’s coming, you think ‘now what’s this one about?’ (Linda)

‘When it arrived, the brown envelope, I was shaking. Absolutely shaking and in fear it was going to say no.’ (Tony)

For me, one of the most striking findings was that everyone – regardless of whether they ended up with more, less, or the same level of entitlement that they had received previously with DLA – felt that their mental health had been negatively affected by the claims process itself. Every participant reported increased anxiety, problems with the claims process, and communicating with benefit officials and the medical assessment. That was hard to hear and seems so at odds with what you would hope a welfare system would/should be about.

On a more positive note (and in total contrast to the lack of clear ‘official’ information), participants all agreed how important it had been for them to have access to professional, independent support from a welfare rights adviser (see here for more information on what counts as disability: https://www.citizensadvice.org.uk/law-and-courts/discrimination/protected-characteristics/what-counts-as-disability/).

Speaking to people who have lived through this change to disability benefits was a key part of this research. The importance of promoting the voices of people affected by changes to the UK social security system has been emphasised before (Saffer, Nolte, and Duffy 2018; de Wolfe 2012). It is vital that any future plans to change to the benefits system listen to and learn from the problems experienced by claimants with mental health problems so that transitions can be managed more appropriately, rather than adding further stress and anxiety to claimants’ mental health.

Not long after the PIP paper was published, we were very pleased to see a call to evidence from the Work and Pensions Select Committee on health assessments for benefits. We submitted a response, based on this research, and hope that the outcome is a real shift in how people with mental health problems are treated, assessed and made to feel throughout the process.

When I was chatting to my Dad about this blog, we got talking about the importance of language here and how words do matter. We found ourselves wondering about the role that words like ‘benefits’ and ‘(universal) credit’ play in framing people’s experiences, and how it seems the wider context has contributed to more of a focus on those words now than the likes of ‘welfare’ and ‘social security’.

This also has parallels with another study recently completed by CHAD, which was an evaluation of a ‘Welfare Benefits: Leading and Learning (WBLL) model in Stoke-on-Trent which embedded a specialist Citizens Advice adviser in partner organisations, to work with staff and customers on benefits advice for people with multiple needs. That report calls for greater recognition in organisations and wider services that benefits are a right and legal entitlement of customers (Gidlow et al, 2021).

Going back to the theme of health inequalities and health inclusion, I think the PIP study shows how important qualitative research is to try and improve understanding about people’s lived experiences and what might help to improve their health and wellbeing of people – including those who experience multiple and complex disadvantage.

You can read the full PIP journal article, which is open access, here:

Machin R & McCormack F (2021): The impact of the transition to Personal Independence Payment on claimants with mental health problems, Disability & Society. https://doi.org/10.1080/09687599.2021.1972409