"Lack of joined up services after CRPS diagnosis"

Lack of joined up services for my daughter after CRPS diagnosis

Firstly, I'd like to say that I appreciate what a trying time it is for everyone who works within the NHS. Although it's possibly the worst time to need medical attention, everyone we've seen or talked to so far has treated us with great care and attention, and we really appreciate everything that's been done for us so far. 

My nine year old daughter was sent to A&E at Sandwell Hospital just before Christmas with extreme pain in her left leg which came on overnight. After a week or so in and out of hospital she was given a diagnosis of Complex Regional Pain Syndrome and discharged, with care to be taken up by a consultant neurologist at Birmingham Children's Hospital.  

CRPS is a complex condition requiring a range of care to work towards recovery, but we seem to have slipped into a gap between the initial care at Sandwell and Birmingham Children's Hospital taking up our daughter's case. In the meantime, we feel like we've been abandoned to deal with things ourselves, using what little good quality information we've been able to find online. She's had one physio appointment since she left hospital, and one counselling session which we organised ourselves. We had to organise our own wheelchair and my wife's currently going round in circles trying to organise an OT, having been directed towards a service who told her that they wouldn't deal with someone with CRPS because 'we only deal with neurological conditions' (Which CRPS is).

The consultant at BCH wanted her to have nerve conduction studies done before her appointment, and we were told an appointment would come through soon. We'd heard nothing by the second week of January so decided to chase up and were told, although she was on the system at BCH, no referral had been made for the studies, and the consultant was away for the whole of January. The receptionist said she'd get someone else to look into the referral and get back to us, but no-one did, so we had to chase up, also speaking again to the really helpful paediatrician at Sandwell who initially referred us. Despite weeks of this we've evidently had to wait for the consultant to return for the process to begin, and it’ll be almost a month from diagnosis before the studies are done and obviously even later to see the consultant. 

All the information we've managed to find so far stresses the importance of acting quickly on CRPS, with the time taken to start proper treatment having a major effect on the time it takes to recover. Obviously we're not medically trained, but it's clear that our daughter's visibly regressing. The exercises given to us by the physio are too much for her to tolerate, and we're constantly having to push her to do exercises she finds extremely painful (we tried to ask about the medication she's been given to control the pain, but again were told this would have to wait until the consultants return).

We keep thinking she might be making slight progress with bending her knee, but if anything that’s plateaued too. She can no longer flex her foot, which she could when she left hospital. She can't wear her tracksuit bottoms or tolerate bathing, both of which she could earlier. It's having a huge effect on her mental health, with ever more frequent panic attacks, and she keeps telling us that she wishes she could die. It feels completely brutal, and without any indication of how we move forward from here, it feels like we've been left to fend for ourselves.