FPM10 Patient Story 1

"Our daughter (then 8 years old) was diagnosed with ‘RSD’ by our local hospital in 2012. We now know this is an ‘old’ diagnosis and the accurate label is CRPS. However, this inaccurate use of terminology was a good example of the lack of specialist expertise available to her. Lack of knowledge and inexperience (even if well meaning!) by our local services in managing our daughters condition destroyed her trust entirely in healthcare professions, left her fearful and we believe significantly extended her overall recovery time. It also left us as mum and dad feeling like we had betrayed her and let her down, allowing well-meaning professionals to traumatise her.

By the time we were referred to Sheffield Children’s Hospital, it is not an exaggeration to say we were desperate. Given our experiences over the first few months of our daughters condition, I genuinely don't think it's too strong a point to say the Children's Pain Team were a life line and saved both our daughter and our family! From our very first meeting, the overwhelming compassion towards her and never ending positivity with regards her condition gave us reassurance and mostly importantly belief that things could improve.

The whole team were and continue to be a source of expertise and advice to myself and my husband. As well as providing intensive treatments (including medication, nerve blocks, physiotherapy and psychology input), they liaised with our local physio and OT services and her school (both primary and secondary - including the transition between these), supporting her to return after extended absences. They have been there for us through the best and worst of times, celebrating every tiny achievement and helping us all to recognise them as that.  I believe the team were instrumental in helping our daughter to walk again (which for 18 months we did not think would be possible). Most importantly, the calm and gentle (but persistent!) approach they took with our daughter has over time repaired the trust she had lost in health professionals. Her views were listened to and respected, and where she felt certain treatment options were working better for her this was supported.

I would want other parents with children experiencing chronic pain conditions to be aware of the services available from the pain team at Sheffield Children’s so they can have the opportunity to access a specialist unit sooner for better outcomes and to reduce the impact of inappropriate care. For us as a family this has empowered us to support our daughter’s needs better ourselves, which as a parent is what you really want to be able to do."