Patient Voices #BreathlessNotVoiceless

Jayne Venables and family

“We’ve gone from two incomes to having to live off benefits”

The financial implications of Jayne’s pulmonary hypertension have brought a lot of stress to the Venables family. Here, they describe what they have been through – and why things need to change.

Jayne

“I take oxygen 16 hours a day and I have IV medication with horrendous side effects that can knock me out for days. I have to use a wheelchair to leave the house. The symptoms and side effects are constant; they never go away, which is why I can’t work.

When I was diagnosed with PH I was working in my parents’ family business. I gave up work immediately as I was so ill I could barely walk 20 feet.

I’ve had to claim benefits ever since. I didn’t even know where to start with them. Even now, it’s a minefield and I’m baffled by it half the time.

Liam is my full-time carer as well as my husband so we’ve gone from two incomes to living off the state.

I’ve had to borrow money from my parents, my sister, even my teenage kids. I don’t want to borrow from anybody, but what choice do I have? We had savings, but they are gone. All credit cards are maxed out.

There are hidden costs to having PH. We have to pay more for heating as I’m at home and cold all the time. The gas bills through the winter are horrendous. Then there’s the cost of prescriptions, and petrol to and from hospital appointments.  

There are things you can get to help you live day-to-day, such as grabbers to pick things up of the floor, but that’s another £20. It doesn’t sound like much, but when you’ve got hardly anything coming in, it is. 

Even though I’ve been awarded benefits, I’m always aware that they could be removed at any time.

There’s a real lack of understanding amongst decision-makers and assessors. They see the word ‘hypertension’ and think it’s high blood pressure. They look surprised when I come into the interview room in a wheelchair, with an oxygen tank, and an IV line coming out of my body.

The more we can promote understanding, eventually, hopefully, we might get through to them. PH needs to be classified as a condition as serious as cancer.

The condition, and its financial implications, have brought a lot of stress to the family.”

Liam

“When Jayne was diagnosed with PH I was working full time as a bus driver. Her diagnosis knocked us all sideways. My work situation changed quite drastically and very quickly as I needed so much time off to care for my wife that I was sacked.

We panicked. We had a house, a car to run, two kids, what would we do?

I tried signing on but was told I wasn’t entitled to anything. In the end the only option was to become Jayne’s full-time carer.

To go from two incomes to nothing in the space of a few weeks was very difficult for us all to get our heads around. It was very stressful and resulted in me having a breakdown.

We are very careful with budgeting. We provide for the kids and would rather go without ourselves to make sure they are ok.

The things we used to do, we can’t do now. We can’t afford go on holiday anymore. Instead we will drive to the coast and sit in the car with some chips. That’s how we enjoy ourselves now.

Most of my clothes are from the charity shop, or hand-me-downs from my 16-year-old son.

If we could work, things would be a lot different. We’re just trying to keep our heads above water now.”

Lucy

“It’s quite difficult because we can’t do the things that normal families do, like going on holidays or days out. It’s difficult to explain but finances have so much to do with what we can and can’t do. Going out is so difficult now because we can’t afford it. Sometimes my mum and dad ask to borrow money from me and I feel as though it shouldn’t have to be like that.”