"Was in Evelina with my eleven ..."

What I liked

Was in Evelina with my eleven year old son for best part of three weeks, building modern and bright, cheerful colours and wonderful views. Hospital school excellent - in fact I wish my son's usual school had such kind and committed staff, my son is autistic and yet he slotted straight in thanks to a superb mix of compassion and discipline.

What could be improved

Building like an oven, especially side (isolation) rooms, lifts ridiculously slow. Bathroom facilities suprisingly basic, no shower available and ventilation poor. Parent's room was overrun with visiting children, despite sign asking they be kept out, absolutely no privacy. I had to go downstairs to an outpatient toilet to have a quiet cry (when my son was very ill) and speak to my family, not ideal by any means. I think Docs need to be aware that run-of-the-mill conditions for them can be profoundly overwhelming for a parent, I found it very hard to keep it together when being given quite difficult news on an open ward surrounded by other families - more sensitivity needed.

I also had a MAJOR problem with confidential medical info re one of my other children being accessed and then discussed by docs without asking my consent - came completely out of the blue when a doc said "we have reviewed X's notes as well". Likewise info being shared with someone who did not have parental responsibilty but whom the staff "assumed was my son's mother". Overall very lax attitude to confidentiality.

Extremely poor understanding of autism by docs and no real attempt made to communicate in an appropriate manner with my son - who has learning difficulties associated with his ASD. He is touch sensitive but despite me explaining this, two senior male doctors manhandled him, pinned him down in a head-lock and then forced his eyes open to check his vision - he was left distraught, crying and shaking. I might add this was not in any way a life threatening scenario, exactly the same test had been done day before at another hospital (by a sensitive doctor) so they could have just checked file for results. I was left disgusted and feeling very guilty I had not intervened. Docs must have special needs, especially ASD, training ASAP. Must add 99% of nursing staff were very good, took time to talk and were kind and considerate - just let down hugely by their doctor colleagues.

Anything else?

I really wanted to be able to praise this hospital and staff, in the past they have treated one of my other children very well - but the lack of understanding of "invisible" disabilities has really let them down this time. Should my son need to be an inpatient again I will have to think long and hard before entrusting him to these doctors.