Written evidence from the Cystic Fibrosis Trust [UCW0053]
The Cystic Fibrosis Trust is the UK-wide charity dedicated to fighting for a life unlimited by cystic fibrosis for everyone affected by the condition.
Cystic fibrosis (CF) is a life-long and life-limiting genetic condition affecting over 10,500 babies, children, and adults in the UK. CF requires time consuming and often complicated treatment regimens to maintain health. Most people experience periods of acute ill-health (exacerbations) that require intravenous antibiotics. During an exacerbation, normal day to day life including work and school must be put on hold and their care needs increase.
Many people with cystic fibrosis find themselves financially vulnerable due to the additional costs associated with the condition and the impact of cystic fibrosis on their ability to work. Research by the Cystic Fibrosis Trust has found 85% of adults with cystic fibrosis experience at least some concern because of the financial burden caused by cystic fibrosis and of those 32% experience considerable concern or worry.
The Cystic Fibrosis Trust provide a range of direct support to people with cystic fibrosis who are experiencing financial hardship. Through the Cystic Fibrosis Trust helpline, we offer practical support and information for people living with CF and their families.
Financial support the Cystic Fibrosis Trust provides include:
• Grants for people with cystic fibrosis to help with some of the costs associated with the condition, including emergency, transplant, health and wellbeing, holiday, home care, education, and prescription pre-payment certificate grants.
• Support with applying for benefits, such as DLA, PIP or Universal Credit.
The Cystic Fibrosis Trust’s Welfare and Rights Advisor
“People with cystic fibrosis can access advice about benefits from me and my colleague (a Welfare Officer), and often they are signposted to this service as they have applied for an Emergency Grant. Many people also require benefits advice at a time when their circumstances have just changed. A common reason is if they have been advised to stop work or reduce their hours due to a major decline in their health, or even a referral to the active lung transplant list. At a time like this, their health is precarious and fragile, and they must keep relatively stable and free from infections. High levels of stress and needing to apply for a new benefit can contribute to worsening mental health, and they have a high burden of daily treatments to complete, and also require a nutritious, high calorie diet. Having to cope with a reduction in income and a wait for UC can lead to difficulties with paying for essential food items and even petrol for trips to their specialist medical teams. We are here to offer support and advice but leaving these people short of financial support at this time in their lives could invariably lead to decline in wellbeing and their physical health, which sadly they may never fully recover from. It seems that the ‘safety net’ which is designed to help them in their time of need leaves them without for a whole 5 weeks, with no choice other than to apply for charitable help or get into debt. |
The Experience of Claimants During the 5 Week Wait and the effect of Advance Payments |
The symptoms of CF are unpredictable and can fluctuate wildly. The progressive nature of the condition means many people with CF can suffer from a sudden or gradual deterioration in their health, which forces them to reduce their work hours or stop work altogether and start a claim for UC.
The 5 week wait (5WW) can have a severe impact on people with CF- both physically and mentally. Entering a period without any income can cause significant financial hardship as people struggle to budget while looking after their health. Regular expenses such as rent and utility bills become hard to meet, as well as expenses directly linked to CF, such as appointments with their clinical team. It is essential to the health of people with CF to have a specific, high calorie diet. Without keeping up with this diet, people with CF become more susceptible to infections and find it more difficult to recover from them. The 5WW can significantly disrupt budgeting for food, leading to people with CF risking their health as they manage their finances and wait for the first UC payment.
This experience people with CF encounter is representative of many claimants of UC. Research from the Trussell Trust in September 2019 showed that leaving work due to illness was a common trigger for a UC application and subsequently endured financial difficulties, that the 5WW exacerbated [1].
Like many people waiting for their first UC payment, people with CF face the dilemma of running down their savings or are forced to seek charitable support – such as emergency grants available from the Cystic Fibrosis Trust – in order to make ends meet. The alternative would be to take on an unsustainable amount of debt, either through loans or UC Advance Payments. We do not believe mitigations to the 5WW, namely advance payments, are fit for purpose to support claimants. They inevitably result in prolonging the financial stress placed on claimants, as their later UC payments are reduced.
The overarching experience of the 5WW for people with CF claiming UC is one of unnecessary and avoidable financial hardship, which can ultimately contribute to irreversible damage to their health.
The Effect of the 5 Week Wait on a claimant with CF:
“I had to apply for UC after my mum died. We’d lived together my whole life and I could only manage to work two days a week due to CF. The 5WW meant I was eating into my and her savings and the relatively small amount of money my mum had in her bank account which transferred to me as her only son.”
“The combination of the 5WW and stopping my Working Tax Credits following my UC application was, I feel, particularly cruel. I was eligible for working tax credits only because I was on DLA due to my CF, and my low salary was because I could only do a certain number of hours per week. My salary remained the same, my health condition didn’t suddenly disappear, yet my tax credits were stopped over a month before my first UC payment, despite still being on DLA. “
“My UC being subject to the 5WW in such difficult circumstances didn’t help my overall wellbeing, health and stress levels. This was on top of the feeling of loss and missing my mum. It was easy to lose motivation to keep up with all my treatments for CF. I’m not saying the 5WW was the sole reason I failed to manage my CF, but it certainly worsened matters at such a difficult time.I was offered £200 as an advance payment, which would have needed to be paid back at £20 a month for ten months. I thought it was pretty pointless as I’d only be losing money in the future.” |
Testimony of Clinical Psychologist for Adult Care in CF- The Experience of the 5 Week Wait for a Mother (L) and her daughter (B)
“The 5 week wait for UC had a detrimental impact on both B and her mother’s physical and emotional wellbeing. B has CF, including pancreatic insufficiency and CF diabetes. The disruption in B’s access to funds made it extremely difficult for her to access sufficient food to maintain her nutrition to a safe level. B is required to follow a high energy diet and a higher than average calorie intake (200% of someone without CF). This caused an understandable amount of stress and anxiety for both her and her mother.
“B appeared to adopt a sense of responsibility for these difficulties and her mother, L, described a sense of shame in being unable to provide for the family. While they were signposted to local food banks, L described feeling too embarrassed to access them. The uncertainty of living with a fluctuating and progressive condition was made more difficult by the additional uncertainty of income, which added to B and L’s overall experience of distress.”
“After L applied for UC, the 5 week wait put her into debt as she paid back rent arrears. B had just left college and, due to change of circumstances, transferred to UC. L is now on a single person income, and has to get by on £40 a week to cover all bills and food costs for both her and B. B is currently on the 5 week wait for her UC and, as there is a backlog with payments, will have to wait even longer to be allowed onto the higher rate payment she is entitled to.” |
Offsetting the Impact of the 5 Week Wait |
Costs and Savings to Third Parties (Charities and Support Organisations) |
From September 2019 to February 2020, The Cystic Fibrosis Trust has provided emergency grants to 16 people with CF, who were under financial hardship during a 5WW for a new UC claim. The Trussell Trust report also commented that many people struggling under the 5WW depend on financial support from the third sector, as well as food banks 1.
Cystic Fibrosis Trust Emergency Grant Applicants:
Single male, whose deteriorating health from CF has meant they are off sick from work: “I’m not well enough to work, and now experiencing delay following application for Universal Credit. I have fallen on a hard time after just coming out of hospital. Need funds to help pay my bills.”
Social worker on behalf of a family of 4. Mum and 2 children all have CF, dad recently lost job and triggered a UC claim: “They do not have enough money to buy food and put electric and gas in the property. This grant would help them out until their first UC payment. Without it they are going to get into more debt.” |
Are different mitigating options needed for different groups of claimants? |
Our evidence shows that a progressive, life-limiting health condition like CF can be severely worsened by the effect of waiting for a first UC payment. These groups could be prioritised for support in preventing any delay to first payment. Submitting a Fit Note could facilitate this.
[1] #5WeeksTooLong. Why we need to end the wait for universal credit. The Trussell Trust. September 2019. https://www.trusselltrust.org/wp-content/uploads/sites/2/2019/09/PolicyReport_Final_ForWeb.pdf