"Coordinated care for a disabled child- it isn’t!"

My grandson aged 18 months, for whom I care 2 days a week, has complex epilepsy and developmental challenges. He has been seen in Glasgow under a specialist in seizures in children and in Forth Valley by a consultant paediatric also specialist in epilepsy. He is known to the specialist epilepsy nurse and to physio and OT; as well as ophthalmology. This is a lot of professionals and each individual has been caring and compassionate BUT on 2 occasions now his seizures have stopped responding to the regime of medicine in place. When this happened in October 2018; we spent 6 weeks in hell of him seizing; sleeping or screaming. He was reassess in Glasgow but the results were not shared with Fv; then the new med prescribed by another doctor in FV didn’t work and it took nearly 2 weeks to get help from Glasgow; facilitated by the brilliant specialist epilepsy nurse; then we couldn’t fill the new prescription and eventually after multiple phone calls; got it from Glasgow; driving through to collect it.

In December 18 we went back to Glasgow for a repeat MRI scan. It took 6 weeks and again multiple phone calls to get a result. After this; a really helpful joint appointment with both consultants was arranged and a new plan made. Now the seizures have changed again. So 3 weeks ago the seizure nurse was contacted again and she was going to contact the local consultant. Again nothing has happened as far as we know.

So then, for an unrelated reason, my grandson spent the day trying to navigate his GP (no emergency appointment available) a pharmacy( not happy to help due to other meds) Fvrh A&E; transferred to children’s ward where NOTHING about the current problem was on the systems the junior doctors accessed and to complete the story a very well meaning junior doctor who had been told he was not yet reliably sitting TWICE asked “ has he been up and running about”. He is my daughters baby and she does not want to make a fuss or upset anyone who has been kind to her; but the MOST helpful person in the form of the epilepsy nurse seems to have no power to prompt coordinated action from the highly specialist doctors he really needs. Having a disabled baby with very complex health needs is terrifying. Having to constantly battle systematic and persistent incoordination and unresponsive health providers is unbearable.