“It’s all very well .. seeing the poster .. and the person behind the door, but you can’t get to the person behind the door.”

I wanted to be involved in The Cost of Living and Multiple Long-Term Conditions (MLTCs) project because the experience of those dealing with MLTCs in an economic crisis is overlooked. Those dealing with health complications are faced with circumstances that are twice as challenging and complex, due to the extensive support required. Therefore, it is pivotal that their lived experiences of the cost of living crisis is made visible to the government, council and local communities.

As a Community Researcher, participating in the project has been eye-opening. I have learned about how private and public healthcare systems affect those with multiple health conditions daily, and how each institution can compromise health and finances.

Those unable to afford private health care, and who have terminal illnesses, are sometimes subjected to compromise to their life expectancy, as they are put on extensive waiting lists. However, those who opt for private care are stretched financially as the majority of their income is consumed by medical costs, which are as high as rent payments. Consequently, a strain is placed on the mortgage, childcare and leisurely payments.

At times, the project felt incredibly emotionally charged, especially during the interviews and online focus groups. The residents spoke about how their health conditions conflicted with their ability to work and in effect, reduced disposable income normally used to support themselves and their families. When asked about their current financial circumstances, online focus groups used the chat function to share their current monetary status. This reinforces how sensitive the topic of finances is as not all were comfortable to openly share.

However, as conversations progressed during the online focus groups, I found that participants became at ease with how similar their experiences were. The participants began to express how they came from larger households with limited income, including leaseholders and tenants. I noticed a collective conversation about the pressures of having to cut out leisurely activities for children and allocate expenditure to energy bills.

Feedback From Participants

Participant A:

“I’m concerned and there's a lot of pressure on a lot of people. Mm. The centres are all shutting down. We've got nobody really that we can pinpoint to say, go to them, they can help you, you know. It's all very well going and seeing the poster up there and the person behind the door, but you can't get to the person behind the door.”

Reflection

This quote stuck out strongly for me because it highlights the urgency of a community of vulnerable people who feel denied the access to support. Throughout interviews, participants explained local councils and employers extend minimal support. Residents are provided false advertisements of support but rarely are extended the resources to manage their current lived experiences.

A unique insight was participants wanted access to further training opportunities to help them advance into more managerial positions, rather than direct financial aid. There was a willingness to upskill and acquire qualifications which could in effect alleviate current financial burdens.

This project has changed my perception of how the cost of living crisis affects various communities. I now have an unique insight on how individual communities have come to exist as a result of the cost of living crisis. Those with multiple health conditions require more support regardless of their financial income. Participants in higher tax brackets reinforced the necessity of governmental support, as their income does not meet all their required support resources, such as mental health services.

The project has impacted me in the sense I am now consciously spreading more awareness of how vulnerable those with multiple health conditions are and practising sustainability where possible.

I have made a conscious effort in how I shop and distribute my finances. For example, when shopping I look for the cheapest deal and give away clothing items that I will no longer need, so that it can be purchased at a discounted rate at charity shops. I am also now thinking about how I create group forums to spread the awareness of how the cost of living is affecting those with MLTCs, especially young people.

It would be great to see more communal spaces open to those with multiple health conditions. Councils should co-create hubs with residents so they can receive support to alleviate stress that could jeopardise their health even further. The government should also create a system for employers to extend more support to their employees struggling with health issues. This could be subsidised lunches and transport, as well as extensive sick days. There should also be more remote training opportunities to help upskill those with extensive health conditions, so they can increase their income whilst maintaining their health.

Get in touch to find out how we will support your organisation. Please send a message via our contact form to: Raquel Caires Januario or, visit our project landing page for further information.

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