"Awful"

About: Addenbrooke's Hospital

Anything else?

My child has been under the care of the paediatric neurology team and we have received a very poor service. In four years my child's condition has yet to be diagnosed and we have received very little support, understanding or assistance to help us cope with the ongoing seizures. No treatment or care plan has ever been offered. On two occasions the results of the EEG have not been available in time to discuss at our appointment with the consultant and we very much felt our journey to the hospital had been wasted. In addition the video taken of our child having a seizure has been lost. The consultants we have seen complain of high caseloads and pressure of work and appear to be ill prepared and poorly organised. All of this adds to the strain of caring for a child whose seizures are now more frequent and increasing in number.

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Responses

Response from Lee Bennett, Head of Patient Liaison, Cambridge University Hospitals NHS Foundation Trust

Your experience sounds very distressing.

I have shared your story with the Clinical Director for the service and await a reply. When I have the reply I will share it on here. In the meantime if you could identify yourself via PALS on 01223 216756 or pals@addenbrookes.nhs.uk we could arrange to meet with you with the senior clinical team. I am sorry that you and your child have felt so unsupported.

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Response from Addenbrooke's Hospital

Thank you for taking the time to comment. We were sorry to learn of the difficulties you have been experiencing. The Paediatric Neurology team believe they have identified you from the posting you have made but have asked me to urge you to make contact with the PALS team so that we can facilitate a meeting with you. Please make contact either via telephone (01223) 216756 or email pals@addenbrookes.nhs.uk

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