"Lack of Communication!"

About: Cumberland Infirmary

My son suffers from sleep apnoea and is awaiting removal of his adenoids and a tonsillectomy to try to resolve the problem. I spoke to a consultant at the Cumberland Infirmary on 1/08/14 to discuss the extremities of the sleep apnoea to be told it was 'significant'. Whilst sleeping, he was pausing in breath over 10 x per hour for 5 seconds or more. His blood oxygen saturation levels dropped as low as 80% which I found quite disturbing. I was told that studies have been conducted indicating educational development problems as a result of sleep apnoea, and so it was important that the problem was resolved. I asked what sort of timescale we were looking at and I was told typical 1-2 months however, that was the consultants final day before transferring to Newcastle and since she hadn't been replaced at that point in time, it may be longer. Through no fault of the consultant, I didn't find this reassuring at all. It is now approaching mid-October and not once has the hospital contacted me despite several 'promises'. I have had to make contact with ENT, and children's pre-assessment unit and between the two departments, I have been passed from pillar to post with promises, several times, of 'we'll contact you before the end of the week'. Not once have they honoured their intentions. My son, in the meantime, has now developed his cough which exaggerates the sleep/rest deprivation but, completely predictable given the time of year it has now and that all the children return to pre-school and nursery. His behaviour due to this is becoming unmanageable as he is so frustrated with tiredness. my son's personality is completely different when unrested, as an adult's would be, and he is not his pleasant self. I feel deprived of the time I could be spending with my normally well behaved and pleasant mannered son, aged 2. This has gone on far too long without anybody in Cumberland infirmary taking responsibility for his care. I am absolutely disgusted in the lack of communication by ........??? I'd love to say who but due to lack of communication and unfulfilled, "we'll phone you backs', I have no idea. The stress this is causing myself and my husband not to mention grandparents who care for him when my husband and I work is unacceptable. Please can somebody resolve this situation? As a family, we have received a good level of care from the NHS but I feel this is inadequate.

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Response from Cumberland Infirmary

Thank you for getting in touch with this message. We are very concerned about the issues that you have raised and wish to apologise for the distress caused to you and your family. We would like to discuss this further as a matter of urgency, to determine how we can support a resolution to the situation for you. I would be grateful if you could call this number tomorrow ( Thursday 9th) to leave your contact details and to arrange a convenient time to discuss with an appropriate manager . Tel: 01228 524018 Thank you very much for drawing this to our attention, I do hope that your son’s treatment can soon be expedited appropriately. Regards Alison Patient Experience

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