Oxford Pulmonary Fibrosis Support Group celebrates a decade of support

The Oxford Pulmonary Fibrosis Support Group marks 10 years (Credit: Oxford Medical Illustration)

Patients, families, and healthcare professionals joined together to celebrate the 10th anniversary of the Oxford Pulmonary Fibrosis Support Group, which has grown to become a cornerstone of mutual support for those under the care of the Interstitial Lung Disease (ILD) Service at Oxford University Hospitals NHS Foundation Trust (OUH).

Pulmonary fibrosis results from a group of rare diseases that cause progressive lung scarring. With no cure, these conditions can be life-limiting, and lack of public awareness can leave those affected feeling isolated.

Over the past decade, the group has brought together more than 1,500 people affected by pulmonary fibrosis.

A celebratory Christmas quiz and fundraising raffle event to celebrate the 10-year milestone took place in Oxford (Thursday 5 December).

Dr Rachel Hoyles, ILD Clinical Lead at OUH, helped set up the group in 2014. She said: "Despite significant advances in treatment, pulmonary fibrosis remains a challenging and life-limiting condition for many, as progressive scarring of the lungs can have a devastating impact.

"We established the Oxford Pulmonary Fibrosis Support Group in 2014 to provide essential support for patients and their families, as this complex disease is often poorly understood within the wider community. The group offers a safe space where patients and carers can share their experiences and provide mutual support.

"Our group meetings feature a range of expert speakers who help patients, partners, and family members better understand this disease and its symptoms. They also offer practical strategies for managing life with pulmonary fibrosis, including advice on oxygen therapy, travel planning, and accessing benefits. By sharing knowledge and fostering connections, we empower patients to engage more confidently with healthcare services and advocate for their needs."

'I'm still here fighting'

Carolyn Beveridge was diagnosed with pulmonary fibrosis three years ago, leaving her "devastated" and "panicked".

On the recommendation of her daughter, a nurse, she attended one of the meetings. Carolyn said: "I had felt like giving up, but attending one of the meetings was brilliant as it was just what I needed.

"I met other sufferers who had had the illness a lot longer than I have. It gives you hope. I have made some good friends and enjoy the meetings."

She added: "I really am grateful to the staff that run it. I highly recommend anyone who is diagnosed with pulmonary fibrosis to go to the meetings as they really do boost your confidence.

"The support group has helped me a lot. It has been three years since I had the diagnosis, and I'm still here fighting. I intend to be for a lot longer."

The Oxford Pulmonary Fibrosis Support Group meets monthly in the community – away from hospital settings – in Oxford and Banbury, and people can attend virtually.

It provides the opportunity for patients to meet others and get further information and advice to help improve their quality of life and make a positive difference.

It is open to anyone affected by pulmonary fibrosis, whether as a patient, family member, carer, or friend – everyone is welcome.

Carmine Ruggiero, an ILD Advanced Specialist Nurse at OUH, said: "We are here to support everyone living with pulmonary fibrosis. While many who attend are facing life-limiting illnesses, our meetings are filled with positivity and laughter.

"It is inspiring to see people come together, form friendships, and genuinely support one another. Our group also provides a welcoming space for partners and carers to connect and share experiences informally."

Contact the ILD Service via oxford.ild@ouh.nhs.uk if you are interested in attending future meetings or want more information.