Living with the financial impact of systemic vasculitis

This page is about:
  • Financial insecurity with systemic vasculitis
  • The financial impact of systemic vasculitis on couples and families
  • Financial security and making ends meet with systemic vasculitis
  • Meeting extra costs of systemic vasculitis treatment

Financial insecurity with systemic vasculitis

Among those who spoke to us about money matters, Holly and Marie were seriously affected by financial insecurity.

Housing and disability benefits gave Holly a “very, very tight budget,” even for essentials.

Vasculitis and fibromyalgia cost Marie her house and her job. She discussed uncertainties about her financial future with a wellbeing service.

People who were unable to work as a result of vasculitis could apply for disability benefits and retirement on medical grounds. We heard repeatedly that it is not easy to navigate these systems or have a successful outcome; Jane X has even been put off trying.

Sharon has vasculitis and a kidney transplant but couldn’t get medical retirement. She now lives with “restricted finance.”

Jane X doesn’t think the benefits system is set up to understand illnesses like vasculitis.

It was common for people who receive benefits as a result of vasculitis to tell us that:
  • There is too long a gap between applying for a benefit and getting a decision
  • Application processes are difficult to navigate and often make people feel judged unfairly
  • Getting a benefit is no guarantee that they will continue to get it in the future
Dawn had to keep working full-time, as she couldn’t get a benefit that would allow her to cut her hours. It was a big help when occupational health helped her get paid time off for appointments. Wendy had “a very scary period” when her sick pay ran out before her medical retirement was agreed. Holly is still paying off an overdraft debt she ran up in the eighteen months it took her to get financial benefits approved.
Gail worries every time her disability benefit entitlement is reassessed that her adapted car might be taken away. Melissa is used to showing people what she is able to do and how she can be independent. However, when she applies for support, she feels that people are “judging” her; “it’s sort of this complete flipside that suddenly you’re trying to focus on all of these things that you can’t do. And that’s emotionally draining.”

The financial impact of systemic vasculitis on couples and families

People with families told us it was important they were provided for.

As Grant was working for himself when he was ill with vasculitis, he had to keep going to pay the bills.

With medical retirement for vasculitis, Lynn could contribute to her family’s financial stability.

People with a partner who told us about financial implications of vasculitis often said that they address these as a couple. Diane and her husband had always dreamed about building a house but “I cut my hours in half, so my salary was obviously cut in half. I was out of work for three years so that had a huge impact on the finances.” Mo was “lucky who I fell in love with and married, so [laughs] he’s given me the financial security. Dean’s wife continues to work full-time while he gets a “bare minimum” in benefits; he feels she should get financial recognition for being his carer.

Dean can’t work due to vasculitis. He would like to know if he is entitled to more financial support.

When Holly went through a long process to get disability benefits, her mother “gave me as much money as she could at the time” but this was not easy as she was “a one-person household, one income.” Melissa’s parents “have put huge monetary cost into my healthcare and my social care” which has “completely changed their lives.” This included retiring early and buying a caravan when she went away to university so they could stay nearby and continue caring for her.

Financial security and making ends meet with systemic vasculitis

Some people we spoke to felt financially secure in spite of having vasculitis. They commonly described themselves as lucky to have savings or a good pension when vasculitis struck.

Karen is relieved that she hasn’t had to worry about her finances while living with vasculitis.

Being financially secure allowed people to do things they wanted. Steve feels “tremendously privileged and fortunate” to support vasculitis charities. As well as paying for a personal trainer, Karen hired an electric bike so she could still go cycling with friends.
Although Sharon gets benefits, this is “nowhere near what our combined incomes would have been on a monthly basis.” As a result, she and her husband looked at their spending priorities and how they could live within their new budget. They upcycle, go camping, and take advantage of the cheapest times to go out for lunch or to the cinema.

Meeting extra costs of systemic vasculitis treatment

Sometimes the NHS can help with travel costs, depending on where people live in the UK. Isabella is on an island so had to travel to the mainland for chemotherapy treatment. Her health board covered the plane fare and money towards accommodation costs. Diane lives in Northern Ireland and sees a vasculitis specialist in England. At first she paid for her travel, but then found out her consultant could apply for travel costs and money towards accommodation and meals.
People who need extra equipment may get help from local authorities or charities, but sometimes pay themselves. Melissa’s GP referred her to NHS wheelchair services. However, the one they offered her was heavy, not easy to get in and out of the car and meant she couldn’t push herself. Instead, they gave her a “tiny” sum to put towards a more suitable wheelchair.

Melissa needed a wheelchair to be independent with vasculitis. She paid for it by applying to charities.