How has being involved in the LEAP/TIN helped you personally?

Joining the TYPPEX-LEAP from the onset in 2017 has been a very rewarding experience to say the least. I didn’t know what to expect because I had never taken part in any type of public involvement group before. It came at a time when I wasn’t feeling good nor confident about myself so didn’t think I could add anything but I am so glad I joined despite my fears.

From the very first meeting I felt welcomed and supported. I felt no matter small or big contributions were always welcomed. I felt I could speak freely, being listened to, understood, appreciated and validated. I felt part of a team and included. Being a member of the LEAP team has increased my confidence and self-worth because I was able not only to learn new skills and knowledge but also to share my insights and lived experiences.

It is a clinical work with creative work of creation along the way and I found that educational and enjoyable.

I felt it was like a big puzzle that it looked overwhelming when I first saw it but with patience and time it started to take form and shape. It helped me to sit with the discomfort when faced with a task that was out of my comfort zone. It also highlighted the power of team work because everyone always brought something new to the table that either added or complemented the points in discussion. I highly encourage and recommend to others to take part in any type of public involvement groups as they may also be surprised with the outcomes just as I was.

Text by: GS

Anjie Chhapia

I started my Lived Experience Research Involvement with TYPPEX right from the onset having been invited after brief interview with McPin who are supporting the Lived Experience participation in this study.

It was my first experience on a project of such depth outside London. Knowing that there would be involvement from Lived Experience participants from various other areas made me feel comfortable to go ahead. Also, the fact the McPin were overseeing our involvement made me feel confident to be involved.

At the beginning of the study – as a participant representing Lived Experience it was a place to learn, find out expectations, understand what was required and understand the group dynamics.

The study team were very understanding of the Lived Experience participation, however the first few sessions felt very intensive in terms of Clinical content and my knowledge of research expectation was not very clear.   I felt nervous when I saw so many High-level Clinicians involved in the study, and it was overwhelming as the content shared was a lot of clinical ideas that did not seem very clearly outlined as to the outcomes required from myself. At the time I was myself also struggling with low mood and anxiety though I really wanted to make some difference through my involvement.

As I got into the study’s progress it became smoother to understand that my expertise of lived experience was valuable to the study in terms of what was offered to patients through the therapists through my expertise of the barriers faced by people from underserved communities as well as those that may have language barriers.   I myself had faced some of these challenges when accessing services in the NHS IAPT services.

The study became clearer and interesting as it progressed and the McPin support and guidance is tremendously useful and valuable.

Coding training was one of the most intriguing session I was part of.   Going through the transcripts was another piece of work that gave me time to reflect on my own experience and knowledge of approach. Being involved in questionnaires and the Tools for the Therapist was valuable.  I could input my views in ensuring the cultural aspect of patients was taken into consideration. The question for me was how patients would understand the difference between being involved in TYPPEX rather than IAPT and the confusion they may have caused disengagement. The other issue was the tight timeline of sessions.   I was able to input my experience in this saying that it needed to be personalised if possible so open to extension if required. I am not sure if this would be embedded.

Coming through this stage of the study it is heartwarming to hear that so many patients have been engaged with. The whole research seems so alive now that it has gone through the process.

I have overall found the experience very educational, personally helping me develop my research skills in inputting well in research and understand more about some of the technical aspects as well.

It’s a Lifestyle