"My daughter's recent hospital stay"

Our daughter, age 12 and autistic, was staying in the hospital for 3 weeks recently whilst being treated for complicated appendicitis. 

Our very special thanks goes to all the nurses and doctors on the Dunvegan and Tantallon wards.

One nurse for holding our daughter's hands and chatting to her and me on way to theatre ( I think she made special arrangements to be there for the sake of continuity of care for her). She went the extra mile talking to me and  she also later popped back to enquire about her once she got transferred to Tantallon.

One doctor and nurse for taking their time with taking her bloods and for  listening to me, by waiting for her to be ready (or as ready as she could be). I am sure this has reduced her trauma.

Two of the nurses and doctor having a midnight "Harry Styles" party whilst taking her bloods, and for being truly person centered.

I would like to point out, however, that as far as autism is concerned, the hospital stay was quite traumatic for her (even if she didn't outwardly show it.)

Here are some ideas for improvement : 

I think there is scope for much more autism training and awareness.  Lack of awareness has meant that I felt the need to stay with my daughter at all times during her hospital stay to fight her corner. For example, I  had to ask every single nurse on night shift to turn the beeping monitors off as quickly as they could. 

I approached one of the senior nurses on the  Dunvegan ward a few days after admission, to see if some accommodations regarding my daughters care could be made. She said it was difficult to stick to a routine on a busy ward and to be dressed at a specific time each day and I agree this cannot be done ; however, she said a plan would be made and the nurses would be told to make a plan/speak to my daughter every morning about the arrangements for getting dressed. However, this was not adhered to. As a result my daughter was extremely anxious a lot of mornings. What made it worse was that nurses kept promising they would dress her or come back  in 10 minutes, but then it took 1-2 hours until they were back and by then it was nearly lunchtime. On occasion they didn't come back at all. If the staff had some basic autism awareness they would have known not to do this.  

On another occasion I explained to one of the nurses that my daughter is autistic and that she was getting overwhelmed with the bright lights, and I asked if her curtain  could be closed. There was no acknowledgement or even awareness  of it being stressful for my daughter. However, the answer I was given was that the curtain had to stay open as leaving it shut would be unfair to the other patients on the ward. 

At first, I tried to earmark even just half an hour per day to allow my daughter some much needed downtime when she needed it or asked me for it. I mentioned this to staff but the information did not get passed on and it was impossible, with staff popping in constantly. I was also  wondering why - once my daughter was mobile again - no one mentioned MacDonald House to me or told us about quiet areas in the hospital (spiritual room for example). I only later heard about this from another parent in the family room. In future, perhaps staff could bear this in mind and signpost parents and patients when they come across autistic patients in hospital.

Staff were maybe also assuming that my daughter was okay whilst she was on the wards, as she didn't scream or appear distressed. But a lot of the time she wasn't okay. She was masking her difficulties, as is normal for a lot of autistic females. She is now suffering from severe burnout

On a positive note, there was a student nurse who was given special responsibility to look after her for a few days. My daughter completely loved this 1:1 attention from the student nurse and she told me  that these were the best days for her. It made such a great difference to her anxiety levels.

What matters to me: conversations

I looked at the QI board in the corridor  and the  what matters to you agenda on the wards.

My daughter appreciated the what matters to me conversation she had with staff. She said she really liked it so well done.

However, as a parent of an autistic daughter, I would have appreciated a what matters to me conversation with staff myself as her parent, especially as it became clear that my daughter would be staying in hospital for longer than planned. No one approached me to have a conversation, I had to initiate everything myself. No one checked in on us to say I realise your daughter is autistic. Is every thing ok or is there anything we can do to make her stay easier? I feel very strongly that had someone done this, it would have greatly helped me to manage our own stress better. It would have been a big weight off my mind. Having a daughter in hospital with a life threatening condition would have been stressful  for any parent  but having an autistic daughter in hospital  ( even if daughter is masking) can be especially stressful and a bit of extra help and empathy would have made our experience considerably better.   

Despite of all of the above, A big thank you to everyone. Just wanted to make some suggestions on how things can be improved.