Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?
The concerns were raised at the newly established PF Carers’ Focus Group, hosted by Action for Pulmonary Fibrosis, which held their second meeting on Wednesday 22nd July and included representatives from across the UK.
The main fears raised are that people will not adhere to social distancing guidance, putting patients and carers at risk, while the pulmonary fibrosis cough might be mistaken for Covid-19.
At the meeting, Debra Chand, APF’s National Support Manager recapped themes arising from the initial meeting, followed by an open forum where individuals could raise issues and share ideas from their own caring experience. In addition to concerns around shielding, areas discussed included:
- Communication regarding hospital appointments for reviews and investigations
- Reduced capacity with lung function testing due to Covid-19
- Information on Pulmonary Fibrosis at the point of diagnosis, as well as information which could be carried by carers and used to share with others to increase awareness of the condition
- Eligibility for flu vaccines and registering as a carer at GP surgery
- Antibody testing for Covid-19
- Going on holiday with oxygen and other oxygen related queries
Useful resources and links relevant to the issues covered were shared and the group agreed to input to the development of:
- A lanyard for patients and carers, with clear and visible instructions on safe distancing
- A pocket-sized fold out leaflet on PF to increase awareness of the condition
- More carer information and resources on the APF website to improve support to all those living and caring for someone with Pulmonary Fibrosis
The next meeting is scheduled for Wednesday 9th September at 2pm. If you are interested in getting involved and making a difference by joining our friendly and supportive Carers Focus Group, we would be delighted to welcome you. Please register your interest via e-mail support@APF.org or by telephone on 01733 475642.