Some people grumble but for the most part we have received excellent service in a timely (reasonably) and effective manner. I can only thank those that have been involved in Charlie’s care as they have enabled him and helped us further his care dramatically. That is Paediatricians, Physiotherapists, Occupational Therapists, Othotists, Orthoptists, Neurologists and especially those theatre staff (nurses, anaesthetists, registrars and consultants) at Sheffield Children’s Hospital.
One thing we have benefited from with me working in the hospital where Charlie is treated is how quickly he was imaged (MRI) and diagnosed at 1 year old. Many children with movement disorders or even suspected CP do not get scanned and subsequently do not get diagnosed until much later- if possible I recommend almost ‘hassling’ until such efforts are taken. Many parents do not want a ‘label’ but in such cases as Charlie a firm diagnosis and ‘label’ have opened many doors that have helped progress.
From about 12 months we were referred to Orthotics for some ‘Special Shoes’- the term filled us with dread! We immediately thought they would be ugly, ungainly and big! How wrong we were- Charlie was measured up and within a month a pair of Piedro boots turned up. They were great! They looked lovely, were extremely well made and supported Charlie’s weak ankles and boosted his flat arches. These shoes cost £140 a pair- Thank you NHS!
After 6 months of patching Charlie’s lazy eye he was given glasses- 2 pairs with a voucher. We redeemed ours at Vision Express as Charlie preferred MOSHY MONSTERS… 1 pair didn’t last long before they snapped but they were quickly replaced.
One of our favourite NHS provisions was Charlie’s rollator- all shiny and silver. It gave us a little bit of hope that he might be able to get around with a bit of independence. He now has a green one which he has just about grown out of- another is on order. He tried a pacer- a similar contraption but with a braced seat in the middle, it was too big and he struggled to manoeuver it. Charlie was also initially given a corner seat and a standing frame- the idea being to help him sit/stand in a position similar to weight-bearing.
Although I thought this was a great idea to start with I am now not so sure… Charlie’s body was not really ready to be forced into positions, suitable for walking or not. I am now more bothered about the processes involved in developing a natural walk rather than trying to rush to the outcome. Looking back I remember velcro-ing him in to the standing frame and him being rather upset- poor thing.
Although we have had lots of good ideas and have had lovely service from our physio we are now at a stage where input is limited- 1 session every 2 months. Obviously this is not so good- I understand that there are other children also needing help but I do feel we have been left rather underprovided for now, hence Charlie’s Challenge. Charlie has been luck in-so-far as Lou and myself have been able to devote lots of time and effective therapy into his care- others may not be.
My only other grip is with Speech and Language who I feel discharged Charlie prematurely- although his vocabulary and comprehension are excellent his rhythm and articulation are somewhat CP-like. This is why I have purchased a ForBrain to try develop a better internal feedback loop- this will be reviewed separately in a blog post at a later date.
In conclusion I feel that the NHS provides well for many children but there are holes in that provision. Unfortunately some parents may not even be aware of those shortcomings- hopefully this blog may be able to shed light on a few we’ve found.
Overall, A for effort, C in practice…