Breaking Barriers: Five things we found out from our Impact Report
1. Cost of CF campaign
The impact of rising living costs was felt across the CF community, particularly over the winter months – with more people struggling to buy the basic essentials they needed to manage their health and make ends meet when faced with the cost of a broken home appliance or the loss of income due to a hospital admission. We provided responsive, wide-ranging support, helping people with CF and their families access the basics they needed through our grants offer. We then worked to identify all the financial support available to claimants, supporting them to understand their rights and, importantly, being there to listen and offer emotional support when times were tough.
In response to the cost of living crisis, we launched a new time-limited cost of living fund, providing 342 cost of living fund grants of £225 over the winter period to support those on low incomes to afford food and essentials. 85% of people who received a cost of living fund grant told us that without the grant, they would have struggled to buy enough food over the winter.
Two new SRCs launched last year; one to research detailed ways to monitor lung health of people with CF, and the other to research the pharmacological repair of bicarbonate transport in cystic fibrosis.
Professor Jim Wild, from the University of Sheffield, led a collaborative, multidisciplinary programme of research to investigate how and whether Magnetic Resonance Imaging (MRI) methods can be incorporated into CF clinical practice, including developing easy-to-use software to process the MRI data and working out the best ways to support CF clinicians and the people with CF and families they care for, in understanding the significance of this new information for people’s lung health. If successfully adopted into CF care, these new MRI methods could give a much more detailed assessment of the lung health of people with CF and reduce their exposure to X-rays (as they may require fewer lung CT scans that require X-rays).
The other SRC, led by Dr Paola Vergani and based at University College London, began a programme of research to understand in detail what happens to bicarbonate transport in CF. They will investigate it in different forms of CF (where people have rarer CF mutations) and in different tissues, particularly the liver. They hope that their lab-based studies could lead to ideas about new ways to treat CF in the future – tailored to individuals based on the form of CF they have – and could lead to drugs that treat CF in a different way than the current medicines.
3. The UK CF Registry
The UK CF Registry is a world-class database that includes data on over 99% of people with CF in the UK who have consented to their data being submitted by their CF team. Anonymised Registry data is vital in supporting research, service improvement and information materials.
The UK CF Registry has continued to play a pivotal role in evaluating the effect of Orkambi, Symkevi and Kaftrio following interim access agreements across the UK. The UK CF Registry annual data report in 2022 also found that 7,384 people reported being on a CFTR modulator by December 2021.
4. Providing vital information and support
We launched the Home Essentials Fund and funded 113 vital appliances between October and March, including fridges needed to store medication and washing machines needed to keep clothes and homes clean and hygienic. We also provided 57 Joseph Levy Education Fund grants, helping people with CF with the costs of higher or further education. Ten Helen Barrett Bright Ideas Awards were presented, supporting people with CF to take a step forward in self-employment, building confidence and giving them an opportunity to shape a career that fits around their health.
Our welfare team supported 377 people last year and secured benefits income of over £900,000 for people affected by cystic fibrosis, and 300 people received detailed, personalised one-to-one benefits advice, with support provided to 50 people by our income maximisation service. Our Helpline responded to over 4,799 enquiries, making it the busiest year on record for our Helpline.
Thank you so much to everyone who fundraised for the Trust in 2022/23. All the money raised will help make a big difference to those living with CF.
Our Team CF runners took on an array of races across the country, including the Belfast City Marathon, Cardiff Half Marathon, Edinburgh Running Festival, London Landmarks, Royal Parks and London Marathon. The amazing runners who took part in these events raised a combined total of £480,000. Our loyal branches and groups across the country raised a fantastic £124,000.
Wear Yellow Day continues to go from strength to strength and raised £110,000 with growing numbers of our incredible CF Mamas and schools. The 20th anniversary of Carols by Candlelight raised £60,000.
Cystic Fibrosis Trust offers a range of CF-specific support services for people with CF and their families to help with practical and emotional issues. Our Helpline is there for anyone affected by CF, and we provide safe spaces for the community to share experiences through our online forum, peer support and youth programme. Our financial support services, including welfare grants and specialist benefits advice, can help relieve worry and stress around financial issues, and our Work Forwards programme aims to boost confidence and tackle barriers to work.
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects almost 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.
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