"The whole experience was very traumatic"

About: Darent Valley Hospital / General medicine

(as a parent/guardian),

My daughter was admitted to AMU for having unexplained seizures. My daughter already has Asperger syndrome so has a degree of mental health issues, in the fact that she is mentally and emotionally not her age. She has been feeling low and depressed lately for a number of personal issues such as bereavement and had already been admitted to the hospital at the end of may as her friend had rung her an ambulance stating that she was having a seizure. The hospital discharged her after one night for intoxication even though she had barely had anything to drink. 3 weeks ago she had another seizure and her GP referred her to see the neurologist. Then last week she had a large seizure whilst at work and ended up back in the hospital. They decided to admit her this time due to the severity of the seizure and the fact she was continuing to have them whilst still in hospital. She was admitted to AMU and it was four days before she had a CT and the MRI and I feel that we had to argue and make a real fuss for that as they seemed in no hurry to do it. All the time she continued to have violent seizures, several a day and her mental health was being severely affected. As the tests came back clear it was decided that the likelihood was that she was having seizures as a result of her depression and mental health state.

I would say that a third of the staff were very good and understanding with my daughter and took time to reassure her as she was very frightened, she did not understand why this was happening to her. The rest of the staff were awful, as they treated her like a naughty child that was doing it on purpose even though the doctors made it very clear that she had no control over the seizures. I had asked staff to ensure that I was rung should she have a seizure and I was not there or if she was frightened at all, it was only really at nighttime that I did not stay. I had a phone call one night to say that she had had a seizure but strongly implied that she had done it to herself as she lowered herself safely to the floor, but I was not to worry as she was safe and sleeping now in bed. When I arrived the next morning 3 other patients which were also in the bay told me that they were surprised that I had not been in the night before, as she had a seizure and was very very distressed. I told the three patients what I had been told the previous night and this had actually been documented in her notes that she had safely lowered herself to the floor, all three patients said what a load of rubbish she hit the floor with force, which staff did not witness and was left fitting on the floor for several minutes before any staff came into the room. The following night I stayed a lot later as she was very distressed from the night before, she had two large fits, and staff just pulled the curtain around her and left us to it. When the nurse did eventually come back into her bed area twenty minutes later, and she was still fitting which was very frightening and distressing for us, I asked her that if she pulled the curtains round her did it mean that she could not see her therefore she did not need to worry? to which she replied that it is upsetting the other patients, like she was some naughty child acting up.

I spoke with a staff member on the Wednesday night asking her to just sit with her for 5 minutes if she fitted til I got there as I was only down the road, she flatly refused, stating that she had thirty patients to look after and could not just sit with one distressed patient. Again, we were made to feel like she was a naughty child acting up, so then I felt I could not leave her. I did eventually leave in the early hours once I was satisfied that she was settled and not likely to wake up. When I returned the next morning, my daughters curtains were again pulled around her bed. When I went behind the curtains she was all alone on her bed fitting, lying on her back, I was very concerned for her safety as she had vomited with some of the previous seizures and they could now not see her and had left her alone.

The whole experience was very traumatic and we was made to feel like she was faking it as it was a mental health issue. She is home now but still fitting, not as often and not as severe as she feels safer.

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Response from Dartford and Gravesham NHS Trust

Dear ball,

We would like to sincerely apologies to you and your daughter on what has clearly been a very difficult time. If you would be willing, we would very much like to meet with you to discuss the concerns you have raised and to understand further what has happened. If you feel able, please can you contact our Patient Advice and Liaison Service (PALs) on 01322 428383 or email pals@dvh.nhs.uk.

Thank you.

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