"Feel we were mislead by staff"

My 44 year old daughter has severe learning difficulties, she is partially sighted and  unable to communicate. She had a history of epilepsy when she was young but had only suffered one episode in many years.

Following a Covid vaccination she had a seizure 24hours later. She stayed in the A&E department overnight and returned to the care home the following day. I stayed the night in A&E with her due to her vulnerability. I felt alone and emotionally and physically exhausted.

She was readmitted with another seizure so i stayed the night again and was unsure how her admission was going to be managed. She had a third one while on the ward  in hospital.

My daughter must have felt bewildered as she has limited understanding, she was anxious and very poorly at the time. My husband and I stayed with her most of the time supported by staff from the care home to ensure she was with people who knew her well.

Sam the Learning Disabilty Nurse became involved at this stage. She was very professional and demonstrated empathy and understanding. Sam facilitated completing a chart with information for staff on the ward to help them understand my daughters needs. This was fixed above her bed for all to see and made a real difference. She liaised with the staff from the care home, the nurses and doctors and emailed the Neurologist with my concerns. These professionals listened and seemed to respect her opinion, she was a real valuable member of the team.

My daughter's experience , although difficult was helped by this intervention.

Unfortunately once she was assessed as being medically fit she was inappropriately  moved to a surgical ward the day before her discharge and this caused a lot of anxiety and stress.

I now know that as her parents we should have refused but feel we were mislead by staff. They lost sight of the person and it was just bodies in a bed being moved from A to B 

I know there is a lot of pressure  on the NHS but this is unexceptable and diminishes the good practice .