IPF World Week | The needs of patients and carers tops the agenda at ‘Voice of the Patient Day’.
To mark the start of IPF World Week, Action for Pulmonary Fibrosis hosted a Voice of the Patient charity day to listen to and learn from patients.
Over 50 patients and fundraisers attended the day at The Belfry Hotel. Trustees and APF support staff presented charity news and held a very productive session listening to the experiences from you – the patients, carers and families.
We learnt that you would like us to focus on ways we can help provide support for carers and loved ones of patients, during what can be a challenging and often overwhelming time. Patients told us how important the dialogue with their doctors was both at the initial stages of diagnosis and during follow-up care. It was felt that further education of GPs at primary care level would make a real difference to the patient experience and lead to better outcomes.
We loved meeting our fundraisers during the day; a group of 10 attended, representing the 100s of you who support us every year.
Fundraisers Claire Wright and Jodie Healing presented us with a cheque for an incredible £12000 in memory of Claire’s dad, Chris Heap.
We were so privileged to meet patients, carers and fundraisers and to listen to how we can help and support you. Being able to meet and talk face to face means we can confidently move forward with plans which will have a positive impact on patients and careers in years to come.
IPF World Week continues all next week and we have got lots of great content ready to share. So , please do continue to help us raise awareness. #UNITE4IPF.