APRICOT hand arthritis public involvement study 2

Blog post from a member of APRICOT’s PPI group

I have been suffering from osteoarthritis (OA) in both of my hands since I was in my early thirties. Then I was finally diagnosed, here in the UK, when I was aged 40. I met Tina and Charlie in our Senior Saints Foundation exercise group when they came to talk about their project with us. I told myself “I hope in the future there will be a discovery they can make for alleviating the pain of OA of the hand and wrist”. Before we started our exercises, they asked questions about what it is like to live with OA. We shared things like what we have to do to ease the pain, including things like doing exercise, as well as the different foods that make OA pain better or worse. Then I was so enthusiastic to learn about their project and be involved with it further that I told them if they need more questions answered or if I can be of help to let me know. Charlie said he will be contacting and sending us an email in the future so that’s how I was involved with this project.

Our PPI sessions were interesting. It was fun sharing our knowledge and experience and interacting with researchers who are quite knowledgeable about their projects. The sessions also involved giving our opinions on the APRICOT project, mostly regarding the choice of treatment and whether to use local or general anaesthetic for such procedures. There were interesting bonus questions Charlie asked us in our last meeting. For example, we were given an example scenario of different treatments, along with their pros and cons and asked which was the best choice. All of us agreed that the third option was the best for us. This option would remove the pain and get the joint moving but might fail more often. If option three doesn’t work then you can still have option one which is an implant that removes pain but feels different because it doesn’t restore natural motion.

Tina’s PPI group was not only interesting but very informative especially in the way that she took notes and put them on the Jamboard. She was so very organised and her excellent technical skills with the computer meant that any points we made in our discussion were quickly put on the screen. During our PPI sessions, we covered different things related to the general awareness of OA of the hand. For example, we talked about the lack of information about the possible joint replacements for OA of the hand. Our group also mentioned that exercise is very important for the self-management of pain. It helps to build up strength and to prevent more stiffness especially as we use our hands very often. Another thing mentioned was that our hands have many joints and the joint structure is very complex and moves in different directions. We also covered treatment awareness and possible interventions for relieving pain.

For me, public involvement is important because you are getting all the information directly, not from books, journals, or other research but from the patients with OA pain of the hands. Unlike OA in other parts of the body, I didn’t know there were more studies, research, and treatment for OA of the fingers and hand in which is more debilitating because our hands are more crucial for us to function and do certain things with.