We're campaigning for better support for people caring for someone with CF

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We’ve used what you told us through our Your Life and CF surveys to call for changes to benefits and employment rights for people caring for someone with CF.

We’ve heard from people caring for someone with cystic fibrosis (CF) that caring responsibilities can have a significant impact on employment and finances, particularly for parents of children with CF.

We believe people caring for someone with CF should have the support they need to balance caring with work and financial security.

We recently responded to two Government consultations, one on Carer’s Allowance and one on employment rights for unpaid carers and parents of seriously ill children. We used your experiences to set out why change is needed and what we think needs to happen.

Thank you to everyone who shared their experiences with us. Your experiences help us show decision-makers what caring for someone with CF is really like – and make sure your voices are heard when decisions are being made.

What we told the Government

Caring for someone with CF can make it difficult to work

Caring for someone with CF involves more than just being there when they are unwell. Parents and carers may need to help with daily treatments, attend medical appointments, collect medication, or take time off work when the person they care for is in hospital.

We want the Government to recognise the impact this can have on carers' ability to work and make sure they have the support they need to stay in employment.

Carers need more flexibility at work

Caring responsibilities don’t always fit neatly into the amount of leave an employer provides. People caring for someone with CF may need time off for appointments, hospital stays, or when their loved one is unwell.

We are calling for carers to have access to more leave, including parental leave and carer’s leave, so they can balance work with their caring responsibilities without being forced to reduce their hours or leave employment altogether.

Carers should be able to earn more without losing Carer’s Allowance

For some carers, working more can leave them worse off. If their earnings go just over the Carer’s Allowance limit, they can lose the whole benefit rather than seeing their support reduce gradually.

We are calling for the earnings limit to be increased and for Carer’s Allowance to taper gradually as earnings rise, so carers are not faced with a choice between working more and keeping the financial support they rely on.

What happens next?

We’ll continue to push for changes that make a real difference to people caring for someone with CF.

We also need to keep hearing from you. If caring for someone with CF has affected your work or finances, sharing your experience can help us show MPs, the Government, and the media what these issues mean in real life.

Please email us at [email protected].

How to get support

If you think you may be eligible for the benefit Carer’s Allowance and aren’t currently receiving it, or are struggling to balance work with your caring responsibilities, please get in touch with our Helpline.

Call 0300 373 1000 or 020 3795 2184, Monday–Friday 10am–4pm
Email [email protected]
Chat with us on Facebook, Twitter or Instagram
Message us on WhatsApp on 07361 582053

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