My young child has refractory generalised myoclonic epilepsy with tonic clonic seizures.
They have been under perth children's hospital and rockingham general hospital for their appointments.
Perth childrens hospital refused to make any outpatient appointments for my child as they were attending rockingham hospital.
Rockingham hospital said multiple times that my child needs to be under tertiary care. Its written in their letters.
It was until they had multiple admissions at pch that myself and their other parent had begged them to keep my child under their care in December that an appointment was made in April.
4 months away.
They said my child didnt need frequent appointments at pch because they were under rockingham hospital. Rockingham hospital has now refused their care because they are to complex.
My child was admitted again to perth children's hospital earlier this month for a week long stay due to poorly controlled seizures.
We had to push for an overnight eeg, a normal eeg was done and they had seizures during this eeg despite being on medication. My child is refractory and is high risk for SIDS and SUDEP because their seizures are sleep activated.
Perth childrens hospital once again didnt book a follow up appointment because they had an appointment at rockingham the following week.
At our appointment at rockingham the dr has said that perth children's hospital need to take care of my child and no further appointments will be made at the rockingham clinic as they need tertiary care.
So now no one is looking after our young child.
Their epilepsy is Refractory and difficult to control, they have failed multiple medications and we still dont have control of their seizures.
We now have severe side effects from the dosage changes at their recent admission and they are not eating anymore and has lost 2kgs in a matter of days , we have no one looking after him and no one to go to.
I think that this is unacceptable care and in my opinion it's neglect.
My child was admitted under professor at pch .
We would like to have continuity of care for my child and to stay under the professors care given they are also the only Epileptologist at PCH, they deal with complex epilepsy cases.
The appointment that pch made in december for an April appointment was with a new Dr whos never met our child.
We have contacted patient liason officers at pch . who has told us multiple times that our child's appointments and all their care can be followed up at rockingham. Well I think that their response is neglect because rockingham do not have the care and facilities to provide care to our child and keep pushing the care back to pch .... pch push back to rockingham and now there's no rockingham care and we are left with no care.
Rockingham has refused all care now.
We need regular consistent care at perth children's hospital effectively immediately given my child is high risk for SIDS.
"Refusing regular care"
About: Perth Children's Hospital Perth Children's Hospital Nedlands 6009 Rockingham General Hospital / Paediatrics Rockingham General Hospital Paediatrics Cooloongup 6168
Posted by pyxiszh77 (as ),
Do you have a similar story to tell?
Tell your story & make a difference
››
Responses
See more responses from Asheila Narang
See more responses from Tony Dolan