"The stay was a great success"

My daughter recently had an operation in the Royal Hospital for Children and Young People to have a gastrostomy peg fitted.  The care she received was second to none.  Staff were made aware of her autism and were more than happy to help cater to her needs, ensuring she had her own room at a quieter end of the ward to help keep her as calm as possible.  Not only did they exceed expectations with the medical care, post and pre op, they were so empathetic and welcoming and nothing was too much trouble. 

Due to her having type 1 diabetes and autism, often her care can be quite tricky to manage but all staff were very understanding of this and helped with anything I needed to successfully manage her diabetes during our stay.  I agreed to manage all aspects of her diabetes care during the stay but I felt fully supported by the diabetic team in Lothian and was very happy with the communication and really felt listened to. 

I do however have a few suggestions/points that I feel would have really helped not only my child during our stay but others who may need to have a stay of the Dalhousie Ward.  I personally found it challenging and slightly disappointing that the long stay ward only has access to a small balcony for all the children.  They have a fantastic playroom available but outside access was sadly not what we expected and needed.  My daughter is severely autistic and needs access to a safe, outside area that is big enough to let her have the freedom to run, independently but sadly this ward does not have access to this.  The short stay ward has an amazing area and other wards have great outside areas but I had to ask a nurse who then had to seek permission to use one of these areas, which was allowed but not guaranteed.  My daughter was encouraged by staff to run about and get plenty fresh air outside to help build her back up after her surgery but this was not always possible as outside the hospital is surrounded with busy roads and, being myself I could not manage her and her disability buggy.  

They do have a wellbeing walk which is beautiful but again its right by the busy roads so I could not allow her out her buggy as it wasn't safe.  As well as being safe to run about, it would have been lovely to let her play with other children in an outdoor space as I am aware there are children who have to stay for long periods of time and so feel interactions with other children would make their stay much easier and help lift their moods.

Due to her disabilities I needed access to a fridge for her supplies and food and this was available but perhaps would be better if there was a separate patient fridge as the main one in the ward was used for the everyday catering supplies as well as patients and often there wasn't much space in it and I didn't want to get in anyone's way having to go to the fridge and get access to what I needed, often during the night. 

Overall the stay was a great success and am forever grateful for the care my child received and for every single person we met.