Susan working in Addenbrooke's hospital as a nurse

Susan talks about her experience of volunteering as a Patient Ambassador with Action for Pulmonary Fibrosis during the last 10 months of Lockdown. Susan has pulmonary fibrosis. Overnight she switched from frontline nursing to front room home working.

I am a nurse and was working in Addenbrookes Hospital Emergency Department through to around 11th March 2020 when I was instructed by my Respiratory Team to shield.

Even before I left work that Wednesday, and I remember it well, I could see patients arriving by ambulance. They were very poorly, symptomatic of COVID. My daughter is a doctor who was working at Northwick Park at that time so I was well abreast of the evolving situation. I was also aware that any respiratory virus attacking the alveoli and causing ARDS would be bad news for patients like myself with pulmonary fibrosis.

Thus, I shielded. I switched immediately from front line nursing to front room home working, answering emails and telephone calls to an Occupational Health helpline for nurses and doctors remaining on site.

This was a wonderful opportunity to work with such a dedicated and passionate team.

However, I really missed patient contact. I also felt immensely guilty that I was not doing more to relieve distress and suffering as I have been trained to do. These feeling were further amplified when the ‘Clap for carers’ started each Thursday.

I felt I really needed to be doing more.
Susan talking to patients over the phone in her role as an APF patient ambassador

At the same time, Steve Jones - Chair of the charity Action for Pulmonary Fibrosis (APF) - mentioned the idea that APF were looking for Patient Ambassadors. 

As a family we have previously fundraised for Action for Pulmonary Fibrosis and have also been really grateful for the Charity's support, being a PF patient myself.

I felt I could empathise with some patients as a telephone volunteer and channel my energies into trying to make a small difference

In actual fact these weekly telephone calls have continued and have developed into friendships and have been mutually beneficial as we have helped each other through the ups and downs of 3 lockdown periods now - muddled with on-line delivery slots, debated Tier 2/3/4 regulations, discussed the merits and availability of vaccines and virtual pulmonary rehabilitation sessions and all sorts of other challenges facing us together as PF patients.

What’s the impact on me?

Initially I saw it as a role, a good act, however after getting to know both Dawn and Tricia I began to enjoy it as a friend. A mutual partnership.

Through talking, sharing ideas, recipes and experiences of living with lung disease we bonded and blossomed.

Dawn is around my age and, like me, she is a potential future lung transplant candidate. She lives alone, is dependent on Oxygen and looks forward to our Tuesday calls. We have PF in common however whereas she lives alone, I live with my husband and children.  We talk about family lives outside of the home, I even called her from our holiday in Cornwall in August and described the sea and Dawn reminisced about her family holidays in Devon as a child.  I think I helped her that Tuesday recall some of her happiest memories of childhood and for the duration of that week's telephone support she lifted herself out of her shielding place in Barnsley and remembered those happy times as a child. She tells me her worries and her plans for the future. I enjoy our calls because chatting to her gives me a perspective on her experience of ILD care in the North of England and the challenges of life on Oxygen.

Tricia is at least 20 years older than myself. I love chatting with her. She is so wise and full of whit. She lives in London and we talk of all sorts. We discuss recipes, Jewish culture, her writing, our children and their hopes and fears- all sorts. We were both patients at the Royal Brompton Hospital- we discuss her health and her wellbeing although I never give advice - just an understanding ear. She hasn’t left her flat since March.  We speak every Tuesday night and she seems to really enjoy our chats and is grateful for the call. She misses her family-human contact - not baking with her grandchildren.

What’s the impact on those I have been supporting?

Both Dawn and Tricia live alone and are dependent on oxygen. Neither have left the house much during lockdown. I live in a busy family of young people and I work full time (albeit from home) so I give them the news on life outside. I listen to their worries and we discuss their fears.

As I am not their family, they can be honest with me in confidence.

I keep them updated on the guidance as it constantly changes. I believe our weekly calls helped them feel less alone during isolation. We share ideas on how to keep as fit as possible whilst shielding.

Susan continues to support Dawn and Tricia with weekly calls. If you would like someone like Susan to give you a call, or if you would like to volunteer yourself to be an APF patient ambassador please get in touch with our support line.