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Cystic Fibrosis: Living Costs
02 February 2023
Lead MP
Jim Shannon
Strangford
DUP
Responding Minister
Helen Whately
Tags
TaxationEnergyBenefits & Welfare
Word Count: 11893
Other Contributors: 7
At a Glance
Jim Shannon raised concerns about cystic fibrosis: living costs in Westminster Hall. A government minister responded.
Key Requests to Government:
The MP asks for benefits to rise in line with inflation, removal of unnecessary PIP reassessments, VAT exemption on energy bills, free hospital parking, affordable food access during hospital stays, and an urgent review of the medical exemption list to ensure free prescriptions for those with CF. The estimated cost to end prescription charges could be as little as £270,250 annually.
How the Debate Unfolded
MPs spoke in turn to share their views and ask questions. Here's what each person said:
Lead Contributor
The MP is concerned about the financial burden on people with cystic fibrosis, including higher food and energy bills due to the condition's specific needs. He highlights that 80% of CF patients are pancreatic insufficient and require a higher calorie intake. The median age at death for those with CF in 2021 was 38 years, making life challenging. Patients face hospital car parking charges and prescription costs unless exempt. The financial report commissioned by the Cystic Fibrosis Trust shows that families struggle to meet monthly bills, with food and energy being major concerns.
Andrew Gwynne
Ind
Gorton and Denton
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.
Andrew Western
Lab
Stretford and Urmston
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.
Kerry McCarthy
Lab
Bristol East
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.
Lee Anderson
Reform
Ashfield
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.
Liz Twist
Lab
Blaydon and Consett
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.
Margaret Ferrier
SNP
Rutherglen and Hamilton West
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.
Martyn Day
SNP
Linlithgow and East Falkirk
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.
Government Response
Helen Whately
Government Response
Discussed various government initiatives to support individuals living with cystic fibrosis, such as disability benefits, employment assistance, energy bill discounts, prescription exemptions, travel costs scheme, virtual appointments, free hospital parking for frequent out-patients, and innovative healthcare technology. Emphasised the importance of providing practical support while balancing the need for in-person medical care.
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Assessment & feedback
Summary accuracy
About Westminster Hall Debates
Westminster Hall debates are a chance for MPs to raise important issues affecting their constituents and get a response from a government minister. Unlike Prime Minister's Questions, these debates are more in-depth and collaborative. The MP who secured the debate speaks first, other MPs can contribute, and a minister responds with the government's position.