About: The Royal Victoria Infirmary

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My son is 13 years old, has kidney problems and Aspergers Syndrome. He has been seen by the Dcotors fron the RVI's Peadiatric Nephrology at the RVI and at a clinic in our local hospital for 13 years. We have aired several compalints/concerns regarding the doctors' lack of understanding of Aspergers and the different information they give us regarding his kidney problems. One docotor says he should have an operation, next time a different doctor says the problem may sort itself by the time he's 7, next doctor (again different) says it may sort itself out when he's 10, next doctor - he will need an operation but dont say when they will do it! All this time my son is taking medication for the problem which he does not like taking. Earlier this year my son again went to the RVI for tests to see if he still had problems - he does and we got an appointment to discuss the implications of this (I have obtained much better information from the internet and as I am aware that my son has grade 5 reflux which requires surgey - only grades 1 -2 put themseves right). My son having Aspergers means he gets very anxious - he physically vomitted when having tests at the RVI last time so prior to the appointment I explained what we would be discussing and why - how the doctor would discuss having an operation etc. we arrived at the hospital handed in our letter only to be informed that doctors had not turned up and would not be turning up as they didnt have a clinic on! Other children had also turned up having appointments ( I assume thier parents like us had to take leave from work and the children missed a day's school). I spoke to two people from the Nephrology department - a secretary and a nurse. I asked to speak to a doctor and was informed by both people that the doctor was busy but would phone me that day. they havent bothered - a week later and we are still left worrying. Not care is it?

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Response from The Royal Victoria Infirmary

Thank you for posting your concerns and bringing these issues to our attention. We are very sorry to hear that your experience in the paediatric nephrology department fell short of the standard expected.

We apologise unreservedly that you were not informed earlier that the clinic you were attending with your son had been cancelled. We understand the stress and inconvenience that this would have caused. We are also sorry to hear that you are confused about conflicting information regarding your son’s condition and treatment. Clinical opinion and decisions about treatment will depend on many factors and are sometimes quite difficult. The advantages and disadvantages of a particular management plan always need to be considered. In many clinical conditions factors influencing those decisions change with time. Decisions about interventions, particularly major ones like surgery, are made in conjunction with families and are based on the outcome of investigations and the patient’s progress. It is important to understand the information on the Internet is not based on individuals and therefore may differ to the advice given when the patient is seen and fully investigated.

It is difficult to respond to your concerns without further information, but if you would like us to investigate your specific case, please do not hesitate to contact Carole Shipley, Directorate Manager or Paul Anderson, Patient Relations Manager on 0191 233 6161.

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