At six months old, Abhishek Behl’s daughter was diagnosed at Edinburgh’s Royal Hospital for Sick Children (RHSC) with Alternating Hemiplegia of Childhood (AHC).
Only two children in Scotland and 55 in the UK have the condition.
It involves many neurological symptoms including paralysis, dystonia, seizures, ataxia, global development delay, epilepsy, and life-threatening apnoea (breathing difficulties) requiring intubation and ventilation in intensive care.
In his witness statement, Mr Behl said: “Our experience with RHSC started on August 4 2017 when my daughter was only five days old.”
Giving evidence in person to the inquiry on Friday, Mr Behl described how his daughter’s illness first appeared.
Mr Behl said: “I noticed movement in her thigh and was watching, my wife, being a hospital doctor, video recorded it and that was the first time we took her to the old Sick Kids (RHSC).”
Counsel at the inquiry asked: “Was it right that these were out-patient and in-patient admissions?”
Mr Behl said that there were frequent admissions.
In February 2018 the diagnosis of AHC was officially made.
Later Mr Behl became one of five or six members of RHSC’s Family Council and a trustee of the national charity AHC UK.
Mr Behl spoke about how his daughter was being discharged one day before he had been told Edinburgh’s new Royal Hospital for Children and Young People (RHCYP) was due to open.
Mr Behl said: “I was advised that if something does happen not to come to the old Sick Kids A&E and to go to the new Sick Kids A&E.”
Counsel to the inquiry said: “And that was because the hospital was closing?”
Mr Behl replied: “Through social media I came to find out it was not opening and we quickly gave a call to the specialist nurse and they did not know what was happening.
“In the old hospital everything was saying goodbye.
“It was sad that the Family Council did not know what was happening.
“I have said it in my statement at (RHSC) it was like a makeshift scenario.”
In his statement Mr Behl highlighted the lack of communication from NHS Lothian’s health board.
He said: “The uncertainty about the delays and the lack of communication also left me feeling really vulnerable.”
Mr Behl’s daughter was eventually first admitted to the RHCYP in March 2021, more than 18 months after the move was supposed to have happened and she received a certificate for being the first patient on the neuro ward.
In his statement Mr Behl said: “I don’t blame the medical staff because, like the families, they were trying to make the best of a bad job.
“I still don’t understand why the communication was so bad and I hope that the inquiry can get to the bottom of that.”
Speaking to Mr Behl, inquiry chairman Lord Brodie said: “We have heard less about Edinburgh than Glasgow so it is a particularly useful contribution.”