Cystic Fibrosis: Living Costs

The shadow Minister is thanked for his presence but there are no specific contributions noted in this batch. Mr Andrew Gwynne thanked the hon. Member for Strangford, highlighting the debate's importance and thanking other MPs such as Margaret Ferrier, Liz Twist, Kerry McCarthy, Lee Anderson, Andrew Western for their contributions. He pointed out that those with cystic fibrosis face higher living costs due to medical equipment needs like nebulisers and feeding pumps. The median loss per household is about £564 a month and the financial hit from energy bills is more severe given current economic conditions. He called on the Minister to assess the current support for CF patients and address their additional costs.

Agreed that many people with cystic fibrosis are unable to access Personal Independence Payment due to the illness being treated as a disability rather than an impairment, noting issues with the assessment process. Penny Mitchell's daughter Eva, aged 15, faces significant challenges due to cystic fibrosis. The current system does not recognise CF as a disability, meaning Eva will lose eligibility for Disability Living Allowance upon turning 16 in June and may struggle with the Personal Independence Payment (PIP) application process. Eva's fatigue and health issues limit her school attendance and future employment prospects. She requires multiple daily medications, frequent hospital visits, additional food and heating costs, all of which add to financial burdens under the current cost of living crisis.

Expressed concern about forced prepayment meters being used even for individuals with extreme vulnerabilities and disabilities, which often lead to self-disconnection because they are more expensive to maintain. She supports the lead MP's request for no PIP reassessments and highlights the importance of removing VAT on energy bills. My hon. Friend mentioned anxiety, and I have a niece with cystic fibrosis who has just turned 18. She is at the healthy end of the spectrum but will eventually face the reality of having a life-limiting condition through access to social media, which can lead to increased mental health concerns. The only reason why people with cystic fibrosis are not covered by the rules that apply to other chronic conditions like diabetes is due to outdated perceptions from when the disease was considered a childhood condition. Kerry argues this anomaly should be addressed.

Suggested that the City Hospital in Nottingham provides a personal chef for cystic fibrosis patients who can eat whatever they want, whenever they want, questioning the accuracy of previous statements. Shared personal experience with cystic fibrosis through his wife's journey, highlighting the daily challenges and costs faced by patients. Emphasized the importance of innovations such as Trikafta in improving quality of life for CF patients. Mentioned additional expenses like heating, food, equipment, and frequent hospital visits. Cited case of a local CF patient named Amelia Ratcliffe to illustrate the ongoing struggle despite medical advancements. Spoke about the daily challenges of living with cystic fibrosis including high food and energy costs, need for 4,000 calories a day, and the emotional toll on families. Emphasised the importance of practical support such as free hospital parking.

Emphasised the importance of having the right environment at home for people with cystic fibrosis, especially in terms of heating due to rising energy costs.

Congratulated the hon. Gentleman on securing another debate in Westminster Hall, highlighting research that an adult with cystic fibrosis incurs an additional £209 per month in living costs while a parent carer of a child with cystic fibrosis incurs an additional £291 per month. I share concern about the impact of limited statutory sick pay rate on people with disabilities like cystic fibrosis who struggle to maintain employment and face financial worries. It is estimated that only half of employers have occupational sick pay schemes.

Cystic fibrosis is a chronic condition that affects the lungs, with about 10,800 people in the UK currently living with it. The cost of living crisis disproportionately impacts those with disabilities, including cystic fibrosis sufferers. A University of Bristol report states an additional yearly expense of £6,500 for people with cystic fibrosis due to dietary requirements and medical treatments.