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"Withdrawal of consent for research"

About: Royal Hospital for Children (Glasgow)

(as a service user),

My son  was first admitted at PICU royal hospital for children Glasgow due to noisy breathing in September 2024 a week after he got his one year immunisation.  About two weeks later, he was discharged from PICU to ward 1E,  while there, a certain medical personnel came in around second week of October  with a form which they urged me and my husband to sign stating that it was to get our consent for the research team to carry a 20 hours long research using my son blood and DNA.

 We weren't allowed time to read the details contained in the form properly and we are now no longer comfortable for any further research to be carried on our son, hence the reason we decided to use this platform to withdraw our consent.

Furthermore, 3 weeks after my son was discharged, he started showing some symptoms and was brought back to the hospital as was advised. Two days later, he was given a new medicine which dropped his BP rapidly and he became so unwell same day that he was rushed to PICU, he however  survived by God's grace having been through intubation and ecmo until the consultants  told us he was going to pass in November.

Our concern now is  after all our son have been through, he is recovering fast  and does everything he would normally do for about a month now but he is still in the hospital with different medicine being tried on him. We were told that there is no medicine that treat the condition they diagnosed on him (mayocardiatis). Therefore, we won't like any further increased dose of the medication he is currently receiving or another one which might land him again back to PICU. We will rather have him  discharged, than back to PICU. Thanks for your understanding.

 
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Responses

Response from Coral McGowan, Patient Services Manager, Women & Children's Services, NHS Greater Glasgow and Clyde 5 months ago
Coral McGowan
Patient Services Manager, Women & Children's Services,
NHS Greater Glasgow and Clyde
Submitted on 24/01/2025 at 11:08
Published on Care Opinion at 11:08


picture of Coral McGowan

Good morning zebrabk73

Thank you for reaching out and I am sorry for your concern.

Can you please email me: coral.mcgowan@nhs.scot with your child's details and I will ask our nursing / medical team to link with you as soon as possible.

Thanks so much and best wishes

Coral

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Response from Mark Davidson, Clinical Director Scottish Paediatric Cardiac Service, Paediatric Intensive Care Unit (PICU), NHSGGC 5 months ago
We are preparing to make a change
Mark Davidson
Clinical Director Scottish Paediatric Cardiac Service, Paediatric Intensive Care Unit (PICU),
NHSGGC

I lead the cardiac and Ecmo teams here at Glasgow Kids

Submitted on 24/01/2025 at 12:02
Published on Care Opinion at 12:02


Morning Zebrabk73

Many thanks for your message. We have taken comments on board and shared with the relevant team members and are reviewing our processes in the areas you highlight. I have also linked with the other team members who continue to provide you and your family with the necessary support following what has been a very challenging illness to date.

I'm so glad all is going well for your child and they have made such a fantastic recovery.

All the best

Mark

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