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“I lived in a house with sewage, flies, maggots, fleas and dead rats”: people with cystic fibrosis fear the worst for winter ahead
Cystic Fibrosis Trust services are also more stretched than ever, providing support for everyone who needs it. 85% of people who accessed an emergency grant said that without it, they would have found it difficult to buy enough food, and 91% said they would have struggled to afford to heat their home properly.
Crucially, people need access to support when they need it as specialist social work makes a real difference when available. Key findings from the Trust latest analysis are:
- The highest number of calls to the Helpline ever seen (2022/23) as costs have risen, with the most common concern being people with CF struggling to afford essentials, and an increasing number experiencing housing issues such as mould and damp – both of which are a serious risk to the health of people with the condition.
- A rise of 11% in the number of emergency grants awarded (2022/23). When surveyed, 81% of those who had received a grant said they had smaller meals than usual or skipped meals because they couldn’t afford or get access to food, and 8% said they went for a whole day without eating.
- Our latest children's CF service report revealed that of those who needed support, 28.3% said they were unable to see a CF social worker, and 10.5% said they were unable to see a CF psychologist.
- 87% of people affected by cystic fibrosis are worried about the cost of living, with 1 in 3 worrying about money every day. 72% of people with CF or caring for a child with CF report feeling financially disadvantaged compared to their peers
CF is a lifelong, life limiting condition with a median age of death of just 33 years old. It causes the lungs and digestive system to become clogged with mucus, making it hard to breathe and digest food. Over 11,000 people in the UK have CF, and it is caused by a faulty gene which controls the movement of salt and water in and out of your cells.
To stay physically and mentally well, people with CF need access to a team of specialists, including doctors, nurses, psychologists, social workers, physiotherapists, and dietitians. However, a new report from the charity found that these multidisciplinary teams (MDTs) are often stretched, with only a quarter of services satisfied with their staffing levels. Several services in our survey reported no clinical psychologists or social workers with specialist CF knowledge within their teams.
Cystic Fibrosis Trust have put together the report Support in Crisis: the unseen costs of Cystic Fibrosis which also proposes a new form of enhanced social prescribing to ensure those living with long term conditions get exactly what they need to support their health. Doctors must be free to utilise the NHS to prescribe a range of measures from support with energy bills to domestic 'white goods' that are essential to support people with long term conditions.
You can read the report, Support in crisis: the unseen costs of cystic fibrosis, here
Rita* first contacted our Helpline for support when her daughter, Asra*, who has CF, was three years old. Rita said: “I lived in a house with 15 other people and there were sewage, flies, maggots, fleas and dead rats constantly in our living environment. Asra developed a skin condition due to the excess humidity and dampness in the room and a very dry cough… she was also always vomiting from tummy bugs she would pick up.”
The Trust provided a package of support including an emergency grant, supporting letter for their re-housing application, and information and emotional support during this time. Rita was unable to access a social worker through Asra’s CF team, which further prevented her from getting the help they needed. Later that year Rita told us she had suffered a mental health crisis and told us she had been thinking of taking her own life. “I was heavily pregnant, and me and Asra were chased by a fox in the communal area from the broken window downstairs… it was so awful. When the landlord found out I was pregnant, he served me with a notice… he kept turning off the heating and hot water despite knowing I have a CF child.”
After advocating for them when the council offered them alternative accommodation which was dirty and unsuitable, almost a year after she first contacted us, Rita was finally given a flat which was clean and suitable. “Cystic Fibrosis Trust went out of their way to contact support services and the council… and provided support for me during the whole ordeal constantly calling me to see if I was ok. I would not be where I am today without the Trust. The grants that were offered to us during our crisis period and after moving to our new home has been lifesaving.”
Rita’s story demonstrates the complex and challenging situations people affected by CF can be put in, though her experiences are in no way a one-off, which is why specialist support from people who understand CF is so important.
More and more of the work that CF social workers are doing concerns families not having enough to eat or being unable to cope with the pressures of huge rises in energy bills. Support services within local authorities are already stretched, and getting access to them is increasingly difficult. Many families simply don't have the time, the energy or the confidence to navigate these systems while juggling the increasing demands of daily living.
Marie Donnelly, Cystic Fibrosis Social Worker
We know that poor home conditions can adversely affect health, and we need CF teams to have the resources to advocate for people with CF and empower them to force housing providers to make changes. Having someone who understands CF pushing to meet social needs and explaining the implications of the condition to services who very often have never come across CF before can be a game changer. People with CF need and deserve a fully staffed medical team to deliver this help.
Time and time again we are hearing alarming stories of people with cystic fibrosis who cannot afford basic essentials, or are living in unsuitable accommodation which impacts their health and wellbeing.
David Ramsden, Chief Executive of Cystic Fibrosis Trust
It is essential that everyone with CF has access to a social worker, and that the Government does more to address the financial strain experienced by those with CF to prevent further risk to long term health.
* Names have been changed
For information or support with cystic fibrosis, Cystic Fibrosis Trust’s Helpline is available on 0300 373 1000, on email at [email protected] or on WhatsApp 07361 582053
Cystic Fibrosis Trust’s Cost of Living Fund opens this week. Visit cysticfibrosis.org.uk/cost-of-living-fund to find out more.