I was diagnosed with IPF in November 2013. From that point I began to raise money for the Trust, and have since become more involved with the administration. This has included arranging rental of stairlifts, POC, mobility scooters, reclining chairs etc, all funded by the Trust. My aim is to continue the excellent work started by the original Trustees, and do what I can to help and support those suffering with PF. I am married to Ann, and between us we have 3 children and 7 grandchildren.
Merchandise and Social Media
I became involved with the Trust in 2017 and was appointed Trustee in 2018. My step-dad Ron Flewett has IPF and I wanted to do everything to help sufferers and their families as well as raise awareness. I look after merchandise for the Trust as well as Social Media.
Chief Technology Officer
I joined the Trust in 2017 and became a Trustee and CTO in 2018. I joined the Trust to offer my technological expertise and to help the Trust move forward.
I was diagnosed with IPF in April 2014, and since then I have been very active in raising awareness of this disease by working very closely with the British Lung Foundation, attending Houses of Parliament, meeting with MEPs at the European Parliament and giving several talks to healthcare professionals. I have also worked with several Pharmaceutical companies and have attended several meetings where I have talked to their staff about the disease and raising awareness. As well as this I have also attended NICE Meetings as a patient expert for Pirfenidone.
I lost my mum to pulmonary fibrosis in September 2013 and the first contact with the Trust was when looking for advice and support.
After finding how little support and information there was for people living with the disease I started to raise awareness by purchasing wristbands in memory of my mum. Donations made at the funeral were given to the Trust and I offered to help the Trust raise awareness and funds and was appointed a trustee in May 2014.
I am currently working as a respiratory nurse consultant and have a vast amount of experience in respiratory care over the past 20 years. I am passionate about evidence based, high quality care for patients as well as equal access to care and medication across all the UK. I have worked in respiratory care both in secondary care and the community and have always been interested in respiratory care and in particular pulmonary fibrosis.
The work that PFT does and the support they provide are a vital lifeline to patients. Both practical and emotional support can make a huge difference to the quality of someone's life. As well as a nurse, I am also the daughter of a lovely late dad who had IPF so I see things from both perspectives. I am looking forward to being involved and helping to make a difference for those with Pulmonary Fibrosis.
After losing my uncle to IPF in 2014, I got in touch with the PF Trust asking if I could help in any way to raise funds and awareness. I met up with Hayley, one of the Trustees and I became the first Ambassador for the Trust. The last eight years I have learned so much, met new people that have become friends and even lost friends on the way due to PF. I recently lost my Aunt, who also had PF.
The Trust and its members have become my second family and I am honoured to be a part of it. I am looking forward to the future of the Trust and witness it grow even more as we help patients and carers of Pulmonary Fibrosis.
I learnt about my IPF in April 2014 when I was 57. It still seems to me that it is a little-known disease, insufficiently researched and understood: this must change. I want any newly-diagnosed patients to be able to talk to us – people with experience of PF and of what it involves. The Trust is run by caring people who want to arrange the right support for people who deserve and need help quickly.
Occupational Therapy Advisor
I became involved in setting up the Trust in 2012 following my experience as a carer for my mother who lived with pulmonary fibrosis. `Being on the ‘other side’ of the NHS was a daunting experience and I quickly learnt the value of peer support from other people and carers. This experience left me with the drive to do something to make the journey for others living with PF less bumpy. It has been inspiring to see the Trust grow beyond all expectations and great to see when we pool our efforts and knowledge, we can ease the burden for others.