"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

Response from United Lincolnshire Hospitals NHS Trust

Dear Wana84,

I am sorry that you had a bad experience within our service. Unfortunately I do not have your details and I am not able to respond in detail about your case. If you supply your details I would be happy to investigate further.

However I can make some general comments. I assume that you are referring to the community paediatric service and in this service we do not have assistants undertaking medical consultations. We do have experienced specialist trainees. These are doctors who are training to be a consultant and have undergone many years of training before undertaking outpatient appointments. I suspect that your son's appointment would have been carried out by a specialist trainee. In most cases the specialist trainee would discuss the case with the consultant either before and/or after the consultation.

The doctor would have commented about your son’s head after reviewing his medical records from the previous appointment. The radiology service do not normally print any copies of CT scan images in the event that you have a referral with another doctor, this doctor would be able to easily obtain these images along with any reports.

With respect to your experience with your son’s appointments again it is difficult to explain the detail what has happened however if a patient fails to attend for two appointments in a row the paediatrician would review the case and decide if a patient should be discharged from the service back into the care of their GP informing their GP that the patient had not attended their appointment. In this event the GP will often discuss this with the patient and decide to ask the paediatrician to offer another appointment. It could be that in your case the GP asked the service to review your son again and this has resulted in a further appointment. I would like to apologise that you appear to have had a number of appointments rearranged. However you then state that you have not attended a number of these appointments and the paediatrician has once again discharged you back into the care of your GP.

If your son has a future appointment with us I would urge you to either attend or if you are not able to attend to contact us so that another child could be offered this appointment. This will help us to improve the service and reduce the time that all patients have to wait.

Please let me have your details via e-mail and I can investigate your concerns further.

Paul Hinchliffe

Senior Business Manager - Women & Children Services

Paul.Hinchliffe@ULH.nhs.uk

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

Response from United Lincolnshire Hospitals NHS Trust

Dear Wana84,

I would suggest that it is not appropriate to try to discuss your concerns in an open forum. I could provide a more complete response if you contact me with these details, however since my last response I now understand that with your son’s clinical condition it is more likely that his appointments would be with the General Paediatric service rather than the Community Paediatric Service as I had suggested.

With respect to your question about having copies of your son’s CT scan; you are correct that you have a right, under the Data Protection Act (1998), to view or have copies of your son’s CT scans. There is a fee associated with this request; up to a maximum of £50, however the exact fee could be confirmed if you make your request. I had suggested that any doctor could request these scans as part of any ongoing treatment of your son as there would be no cost to you or the doctor.

Should you wish to obtain copies of your son’s CT scan a request must be submitted in writing; the Trust has a guide and application form for obtaining a copies of medical records/images. Please log onto the ULHT website: www.ulh.nhs.uk and search ‘access to health records’

Regards

Paul Hinchliffe

Senior Business Manager - Women & Children Services

01522 70 7209

paul.hinchliffe@ulh.nhs.uk