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Inadeqate service for children

Posted By Wana84

"Inadeqate service for children"

About: Grantham & District Hospital / Paediatrics

(as a parent/guardian),

My son was referred to the hospital in 2013, because of ataxia, and a strange head shape. CT has been done, but had to chase the paediatric doctor for many weeks either getting an appointment or any results despite my son showed signs of intracranial pressure and there was genetically inherited hydrocephalus running in my family.

We got the second appointment 6 months later. We didn't even see the doctor, just her assistant who said she was seeing an improvement in my sons headshape saying this when she never even saw my son before. I asked the copy of his CT scan and all results, in case we need to show it somewhere else ( I planned to take her to other specialist in scaphocephaly, as they did not do anything or refer him anywhere else, she didn't even measured his head correctly).

I never got a copy of anything despite I have the right to get them. I got a letter a year later after a non-attendance of the following appointment at Christmas time, that my son is discharged, as I did not attend and they decided we probably moved out of the country, based on that. I'm not British born. Then despite the letter stated we are discharged, we got appointment due just few weeks later. But before the day came we got a letter they changed the appointment then another letter to say it's changed again. I had to plan the journey as we are not local and I don't drive. Had to buy train tickets weeks before, then getting a letter it had to be put on a later date. Then it was postponed again. And again. This went on for around one and a half years! I got god knows how many letters, at least 12 stating my sons appointment changed. Nearly two years and no one saw my son!

Now he is 4 and a half, luckily he is doing fine. His head is still misshapen. I was not looking at the letters anymore, so not attended the appointment which finally wasn't changed, after two years, as I would not trust in those people as they did nothing to help my son. Now I got a letter that my son is discharged. He was already discharged almost two years ago, so don't even understand why we got the appointments. Its a right mess in that hospital, I hope other little patients doing well.

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Responses

Update posted by Wana84 (a parent/guardian)

Hi,

Thank you for your time to respond to my experience. It is possible that the professional we saw was a trainee and not an assistant, but yet it doesn't affect the fact she never saw my son before but she still said she can see an improvement in my son's head shape, which unfortunately wasn't the case. She commented this before any measurement was made of my son's head, or any examination was carried out, so I don't think they had any information to review by the doctor before or on our appointment. The doctor also said 6 months before that he would refer my son for an MRI scan which was then withdrawn because of the 'big improvement', despite my son was screaming and vomited all night every night for long months and also had coordination issues, and seizures which was called ataxia by the doctor, the extra large head and the fact that hydrocephalus running in my family was not a reason to keep running any tests for him, I think they just failed to listen. It was decided before he was examined that my son will be discharged.

She also measured the head circumference of my son which was 2cm smaller according to her measurement, than all measurements made by two different professionals including a doctor and a midwife a year before.

I understand that two non-attendance of appointments result in discharging, I'm not complaining about that, even if these two appointments were almost two years apart. Two times in a row, huh? With a two years gap in between, as we were sent over 12 different appointment for almost two years which was ALL changed one after another, not by me, by the hospital. It's still their failure to see my son for years. Of course you can imagine I wouldn't want to see the doctor any more after we had to wait almost two years to be seen.

Also you are telling me that it's not possible to give copies of CT scans, but yet I saw many mums of children with craniosynostosis who got the CT images, and also the results, what I never got despite I requested. Also, I don't think if I go to a decent specialist in another country then the images will be obtained. I don't see any legislation or law saying my sons images can't be obtained for me when I ask them.

Thanks

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