Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?
With my background in Cancer & Palliative Care, supporting patients and carers for over 18 years and my need as a carer myself ,I felt it was a natural progression to start a carer’s group last year in March 2019. I started the West Kent Support Group in April 2018, which has provided support and information to patients and their carers.
The Carer’s Group provides an open, confidential, safe space for carers to express their worries, concerns and fears along with being able to laugh and cry without upsetting our loved ones.
With the lack of psychological support for patients and carers from the point of diagnosis, support groups have been invaluable. As a carer myself, I knew that if I had the worries and fears of so many things,there must be other carers feeling the same as me. It’s been a small group,meeting at my house, approximately every 6 weeks. There isn’t any particular format, we just talk about things very naturally and encourage people to express their emotions. We also have a WhatsApp group to offer support in between our meetings. During Covid-19, we are still meeting with video calls.
Here is some feedback of what carer’s have expressed about the Carer’s Group.
‘Just knowing the others in the group were going through similar problems and situations as myself has really helped me as it’s reassuring to know I am not alone. Also to have a little rant or let off steam in the company of others that aren’t going to judge you or try to tell you what to do.
They listen with empathy especially as the disease progresses. It’s lovely that we have now become friends with each other too
‘I think the Carer’s Group has proved itself to be a great support to me. I hadn’t been in my little clan long when I lost my husband. Before his death, there was good advice from the others which helped me to know how to get information and support. Since then it has meant the world to me to speak to the others who know they will face a similar end and be alone, but they are there for me anytime I need them.
I feel like our little group are all on a journey through pulmonary fibrosis together and when the road gets rough for one of us, the others are there to help, support and comfort them.
I often thought about those that have lost their loved ones and how they coped. It helped me to know that as heartbreaking as it is when you reach the end of the road, with family and friends around you, you will get through it.’