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My son's experience

Posted By alphaxe3745

"My son's experience"

About: Royal Hospital for Children and Young People (Edinburgh) / Clinical haematology

(as a parent/guardian),

We were booked in with the Endocrine team for my son.  He needed to have a blood test at that time due to his medical issues. As he is autistic he usually needs preparation time with pictures to assist him in processing. There were no pictures or preparation for him and myself (mum) and 2 other staff members had to hold him down physically whilst a (very well trained and fast) phlebotomist found a vein and took blood from him.

It was all over in about a minute, but the stress my boy was under at that point was phenomenal. His words were "you're killing me!" I understand there isn't a nice way to have a blood test, but it was awful to have to hold him down physically to have this procedure done.

The previous time he had a blood test, he was under a general anaesthesia for an MRI. I have been told there is no availability for him to be sedated to reduce the stress for an autistic boy. He then went on to have his "usual" 6 monthly decapeptyl, which again was an awful experience for him, even though he was prepared for this. I had to physically carry him into the room and then physically restrain him, with 2 other staff members. He kicked out and one shouted at him to stay still and do not kick.

I was very upset with the way he was shouted at, although I understand the staff need to be safe. I only hope no other child has to be held down by 3 people to have a blood test or injection. I am writing this 10 days later. The bruising on his arm is finally going now and he still won't give me a hug as he associates me with the trauma he has experienced at the beginning of last week.  

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Responses

Response from Helen Taylor, Team Leader, Patient Experience Team, NHS Lothian 2 years ago
Helen Taylor
Team Leader, Patient Experience Team,
NHS Lothian

Submitted on 03/02/2023 at 11:40
Published on Care Opinion at 11:40

Dear alphaxe3745,

My name is Helen and I work within NHS Lothian’s Patient Experience Team.

I was saddened to read of your sons’ recent experience when attending the Royal Hospital for Children and Young People, Edinburgh for treatment. Thank you for sharing this experience via Care Opinion with us. It must have been very difficult for you to write about this experience, seeing your son frightened, scared and unsure of what was happening. This has clearly been traumatic for both of you for which I am very sorry.

You mentioned that your son is usually prepared for procedures with the use of pictures to explain what will happen. I’m sorry that this did not happen on this visit.

To help us understand and be able to offer you an explanation, I encourage you to contact the Patient Experience team if you feel able. You can do this by email:

feedback@nhslothian.scot.nhs.uk

A member of our team will reply asking for some additional details so we may look into this situation further.

Please be assured that your feedback has been shared with the appropriate services.

Once again, thank you for sharing your feedback.

Best wishes,

Helen

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Update posted by alphaxe3745 (a parent/guardian)

Many thanks for swift response. Magda, the phlebotomist was amazing to get blood from my son. It has been suggested we arrange through the GP for sedation medication to help ease his anxiety. I have also decided not to go through with any procedure unless he has been prepared for the experience. I am a clinician in my day job, and a parent also, so I completely understand both sides of needing something carried out. I only hope he has a better experience next time.

Response from Louise Fegan, Lead Nurse for Quality Improvement and Standards, Royal Hospital for Children and Young People, NHS Lothian 2 years ago
Louise Fegan
Lead Nurse for Quality Improvement and Standards, Royal Hospital for Children and Young People,
NHS Lothian

Submitted on 08/02/2023 at 11:02
Published on Care Opinion at 11:20

picture of Louise Fegan

Dear alphaxe3745,

I am saddened to hear about your son's experience with us as we strive to ensure that the care we provide is person-centred and on this occasion it fell below standard.

We would like to use your experience as a learning point for us all to ensure we try and get this right for next time so would appreciate some more information regarding your son's admission especially the location in the hospital where this occurred.

You are welcome to reply to this post or use the email details that Helen has posted above. We will ensure that this is looked into as quickly as possible and keep you updated with any changes and improvements that are made.

Thank you for sharing once again,

Louise

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