Below are some reflections by parents and patients about their experience of the Oxford Young Adult Clinic.
Our first contact with the YAC was 3 months after our son was diagnosed with kidney disease, aged 17. At this point we were all in shock and disbelief at the diagnosis, our world turned upside down and ours son's future uncertain. Initially, our son didn’t want to socialize or talk about what he was going through. However both the Dr and youth worker just seemed to have a way of engaging with my son to gain his trust in them and to slowly encourage participation in some of the YAC activities. These were a turning point for him. He began to see others in a similar situation and saw those with a successful transplant getting on with their lives. He enjoyed the days out, going off to do all sorts of activities away from the hospital, mixing with other patients and importantly, learning to take responsibility for his own health and medication. All of this helped to make a scary diagnosis less scary. As parents, we were extremely grateful that our son was getting this support and that help and advice was pretty much on tap 24/7. It was important for us that our son had someone to talk to outside of the family, particularly in the lead up to and after his transplant when he was very unwell. 1-1 Home visits were hugely appreciated. We are big supporters of the YAC and can’t praise them highly enough for how they have supported us as a family through the most challenging time of our lives.
I would like to pass on my thanks to the young adult clinic who have supported my son, since March 2016 when he was first diagnosed with kidney disease. My son did not respond as well as expected to his initial treatment and the side effects of the treatment caused extreme emotional lability. He has had several relapses and I've always been able to contact a member of the team to organize emergency appointments and to offer support. The youth worker has supported my son now for three + years. By attending clinic appointments with him, attending his kidney biopsy and just by talking to him helped to take his mind off the procedure. He was there to help when my son was really upset in the waiting area as a result of the side effects of the steroids. My son has also attended many events organized by clinic , such as football matches, theatre trips, meals etc. This was a good opportunity for my son to meet with other patients going through similar and, in many cases, worse illnesses than himself. I have been able to contact the clinic on numerous occasions when I have been worried about my sons mental health and the youth worker has even visited him at home when he was low. I believe this clinic is invaluable to renal patients and their families. The emotional and practical support provided has been greatly received during the difficult times. My son is now in remission and attending university. He knows that if he has any concerns he can contact the clinic for advice.
The young adult clinic scooped me up from the very first day I was diagnosed with kidney failure and have supported me at every step through the exceptionally long road to just about being ready for a transplant. From feeling at my absolute lowest and in times of uncertainty, day surgery, beginning dialysis, many tests and pre op. all this while being a constant emotional support to fall back on when you just don’t want to worry your family or friends. As a young adult having the youth worker at hand to talk to makes the world of difference emotionally. He is a similar age to many of the patients and this makes him extremely approachable and can relate to my worries and empathize, seeing situations through my eyes and reassuring accordingly. The youth worker has also helped me manage my finances through being poorly and unable to work. This is something which otherwise would have caused me a great deal of stress and anxiety. The youth worker also manages the Young Adult clinic’s social media accounts. He has created a network of young Adult patients who have all been through similar experiences. Throughout my journey I have found it extremely helpful to talk other patients about what I am going through and speaking to someone who is a success story helps no end. Social media is the perfect platform to reach patients with important information, light entertainment or even play games. The young adult clinic and the network it provides is vital to me and I consider myself extremely lucky to have fallen into this bracket when I was diagnosed and the help and support offered to me from the Young Adult Clinic has help me greatly, both emotionally and physically.