Specialist Treatment for Children & Young People with Fatigue |
B11
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Young person and Family Perspective
Feedback
My experience of Chronic Fatigue Syndrome :
BMJ Paediatrics Open 2021;5:e001165. doi: 10.1136/bmjpo-2021-001165
Here are some comments about the service:
"The activity chart, which made so much difference once we had got used to it. All of the people we have spoken to from the Drs to the people booking the appointments have just been amazing and really helpful."
"My occupational therapist, is caring and understanding and was always willing to help me get the support I need to be able to slowly achieve my goals and aspirations. I never felt pressured to try things and the OT made me feel in control of my treatment and activity management. Her support has been appreciated by my family and people at college as she has provided further knowledge and information for those who don't understand or are unaware of the effects of ME/CFS, this includes providing information for my GP. I understand that the medical community still don't know much about ME/CFS so the care I have received has been amazing considering the gaps in medical knowledge. I feel very lucky to have received all the support that's been given, and I hope awareness and understanding about ME/CFS keeps growing in the future so support for young people like me can improve further."
"We are so grateful for being in the trial, it has changed my daughter's life and given her the tools she needs to be successful and manage her condition in the future."
"For me, I started to notice my CFS more gradually over a couple of years. Not being able to stay up late, do intense exercise etc. I was diagnosed about a year and a half ago. I found it really difficult to cut back on my activities at first. I was always really active and I loved doing dance lessons, horse riding and going on long walks. Eventually, my paediatrician convinced me to cut back properly and I stopped horse riding and doing all my dance lessons. I found it really hard not doing as much. I was also struggling at school. I was tired all the time but it was mostly manageable. However, I often had "crashes" where I would feel exhausted and not be able to concentrate. They varied in intensity but with the really bad ones I would just lie down on the floor and not be able to move."
"My paediatrician referred me to fitnet and I started the programme. During lockdown, I started the walking programme which really helped me. I started off doing about 10 minutes a day and gradually built up. The routine of it really helped me and I enjoyed going out everyday and listening to music or a podcast. Eventually I found I could do more and more until I was able to walk for 30 minutes every day without feeling tired after or on the next day. At that point I started getting better quite quickly over the next few months. Now, I feel much better. I no longer have crashes and I don't feel tired all the time. I can do so much more than I used to. I can go on long dog walks, I can get through a whole school day without needing to lie down, I've even started doing PE again."
[Feedback from a Patient taking part in Cognitive Behavioural Therapy through the FITNET-NHS Trial]
"At the beginning it felt like I would never get better and I would be stuck feeling exhausted forever. However, I knew that that wasn't true and now I feel amazing. We would like to thank Dr Hammond for his kind and attentive manner and the thoroughness of the appointment left us reassured and motivated to proceed with the treatment plan. It also armed us with all the information we needed for our child's current school, prospective sixth form and HES who are working with her now. "