As the cost of living crisis continues to push prices up, and with the looming October increase in energy costs, a new study has found that those living with life-long health conditions are facing the brunt of this challenge.
Cystic fibrosis is a life-threatening, chronic illness caused by a defective gene that causes passageways in the lungs and digestive system to become blocked by thick, sticky mucus, eventually leading to fatal organ damage. It currently affects 10,500 people in the UK.
Research conducted by the CF Trust has found that people with the condition are becoming worried about how they will manage the rising cost of living coupled with the financial burdens associated with the illness.
A third of people with CF missed crucial hospital appointments due to how much it costs them to attend, according to the Cost of Cystic Fibrosis report published in June, and a further 30% of CF sufferers ended up having to prioritise one ‘basic essential’ over another.
Deciding between heating and eating
Chantelle Nash, a university student living in Chester, has CF and fears she may also have to start skipping hospital appointments in order to pay for heating and food.
‘If prices rise again, I am going to struggle to afford to keep myself healthy’, says the 25-year-old, who currently lives at home in Wallasey, Merseyside, with her partner and his parents.
‘I don’t know how I will afford the food I need, and ultimately I will have to choose between paying my rent, going to hospital appointments or buying food.
‘I won’t be able to afford it all, so I will probably miss hospital appointments because I won’t have the money to travel there.’
As well as Cystic fibrosis, Chantelle has several other conditions linked to her CF, including diabetes, arthritis, stage three kidney failure, problems with prolactin levels and background retinopathy.
Every day Chantelle undertakes a medical routine that involves 24 pills, three nebulisers, insulin, two inhalers and physiotherapy.
Chantelle also has to attend Liverpool hospital for appointments at least three times a month.
But it isn’t possible for her to take the bus, as the walk from the bus stop to the hospital is too far for Chantelle to make when she is feeling unwell.
This means she has to drive and ends up spending around £20 on a trip to the hospital, which includes petrol, a tunnel charge, and ‘extortionate’ parking fees.
But Chantelle has ‘no choice’. She has to attend these appointments to stay alive.
‘If I had a choice, I would spend that £20 on something else, but I can’t,’ she says.
In order to maintain her health and fight off lung infections, Chantelle, like most other CF patients, is required to eat double the amount of daily calories as her non-CF counterparts.
‘I end up spending £60 a week on my food shop,’ Chantelle tells Metro.co.uk. ‘I have to have three big meals a day and lots of snacks. It’s a very expensive diet to maintain.’
As we head towards autumn and an expected energy bill hike in October, Chantelle is concerned about how she will afford to live and fears she ‘won’t be able to keep up the CF diet either.’
‘So I won’t have the strength to fight off infections,’ she explains.
The cold impacts Chantelle’s arthritis, and she has found that she needs to have the gas on during summer. She now pays £70 a month for electricity. Before recent price increases, she was paying £40 a month.
‘I’m freezing, and I have to keep warm for my health,’ says Chantelle.
‘And if I can’t afford the heating as well, then I am going to get very weak.
‘The cost of living crisis is really impacting my mental health.
‘I have become so anxious and worried about how I will pay all my bills and care for my health.’
Chantelle has been in contact with the CF Trust, who have put her in touch with their helpline. She hopes she will be able to receive a grant from the charity to help her cover the extra costs but is aware it’s only a ‘short-term solution’.
‘The government needs to start putting a cap on things,’ Chantelle says. ‘They need to cap energy and gas prices. They need to help people afford to live.’
On top of hospital, heating and food costs, people with CF also spend extra money putting on additional washing machine cycles to wash clothes which need washing more often due to salty skin, sweat and germs, running an extra fridge to store medications, and using medical equipment like ventilators or nebulisers.
Gill, aged 62 from Warwickshire, has CF and told the Trust that she is ‘very concerned about the huge cost increases in every aspect of our lives.’
‘Our fuel bill has more than doubled in less than a year,’ Gill explains. ‘Because I have cystic fibrosis, I often feel the cold and regularly use a blanket and hot water bottle to keep warm rather than put the heating on. It is important for good mental health to try and actually live as opposed to simply existing.’
Another person with CF told the Trust anonymously that they can’t look after their health while working.
‘But I can’t afford not to work. So I work and put my health second,’ they said.
The CF trust also found that 25% of people with CF use their disability benefits to pay for medical prescriptions that are ‘essential to living with the condition’.
The majority of people with chronic illnesses who are on long-term medication are not required to pay for their medication after a list of exempt medical conditions was written by the government over 50 years ago in 1968.
According to the CF Trust, at the time the list was written, children with CF weren’t expected to live to be adults. ‘It was thought of as a children’s condition. So CF wasn’t put on this list,’ the Trust website states.
‘Although in the UK there are now more adults than children living with CF, the Government has never updated the list of exempt conditions.’
The Trust highlighted this issue in their report: ‘We believe it is vital that everyone with CF should have access to free prescriptions regardless of where they live in the UK.
‘We are calling on the Secretary of State for Health and Social Care to review the prescription charge exemption list and acknowledge the financial challenges faced by people with long-term conditions like CF.’
What needs to change?
In response to the report findings, the CF Trust calls for five key changes. Their requests are:
David Ramsden, chief executive of the Cystic Fibrosis Trust, told Metro.co.uk: ‘The cost-of-living crisis is adding even more financial pressure to people with cystic fibrosis, who already face extra costs because of their condition.
‘These include the cost of travel to hospital appointments, additional fridges to store medicines, and extra food to maintain a high-calorie diet. In our recent Cost of CF report, 1 in 3 people said they can’t attend vital hospital appointments because of higher travel costs.
‘These hospital appointments aren’t a luxury – they’re an essential part of ensuring people with cystic fibrosis can lead longer, healthier lives.
‘We’re calling for urgent action to help people with cystic fibrosis who are struggling and will face even more financial difficulties as bills continue to rise.’
In the report, David said that results from their survey painted ‘a shocking picture, with one in three CF families revealing they had run out of food before they could afford to buy more.’
‘We will use this information, and their emotional and candid testimony, to inform Governments across the UK of the need to make meaningful and lasting change,’ he says.
Help for those struggling to afford ‘basic essentials’
The CF Trust is offering support.
Welfare grants are available to help those in financial need, providing help from ’emergencies and transplants assessments to holidays and breaks.’
The charity also supports CF patients through the process of applying for benefits like Personal Independent Payment, Disability Living Allowance and Universal Credit. They also offer legal advice and guidance for people looking to appeal their PIP claims or those taking forward a dispute.
‘Our Income Maximisation Service can support you to access our benefits advice, check you are getting all the financial assistance you are entitled to, and help you to make the most out of your money,’ says the Trust website.
For those who are expected to pay for prescriptions, the CF Trust has guidance on how you can apply for a Prescription Prepayment Certificate.
For more tips from the CF Trust, go to their website.
If you’re struggling to afford essentials, the Trust is directing people to visit cysticfibrosis.org.uk/financialsupport.
For further information, support, or someone to talk to, contact the CF Helpline on 0300 373 1000 or [email protected] It is open Monday to Friday, 9 am to 5 pm.
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