Personalised health budget and CCG

[nita1]

My son has a very specialised complex health needs with life limiting condition, so far the case workers, continuous care lead manager, and Assistant director have failed to understand the his needs. I've made a complaint whilst my son was in intensive care unit , did not receive a reply 7 for months, but did not address the issues, subsequently made a second complaint which lead to mediation meeting. The Lead manager behaved in appalling manner like all must sit in the room before he can come to the meeting, i have to show him my mobile to confirm it was switched off. Both parents were not allowed to attend the meeting, transitional support worker could only attend the meeting as a carer but not allowed to contribute . No eye contact, no hello, no empathy for patient no good bye. All must remain sitting till his leaves the room.

since then we have been bullied, threatened to stop the service, in fact direct payment had been stopped but informed us 2 and half months later. Any information we provided was discarded saying does not believe us. Stopped respite/break for my son, asked us to save money from direct payment to fund it, when money was saved he demanded all of back, now looking into sending us to third party though done nothing wrong apart from making complaint. We though NHS staff meant to treat patients with respect and care!! Several organisation tried to help but so far no organisation has been successful,whilst patients is continually made suffer for sake of individual's ego.