Personalised health budget and CCG

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.

8 Replies

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  • Hi Nita,

    Sorry to hear of your treatment and you are correct it is not acceptable.

    Just wonder if it's the Local Authority rather than the NHS.

    If it is the Local Authority then see your local Councillor and ask for his/her assistance; if you don't know who that is go to your Library and ask them who is your Councillor and how do you contact them - they need to know your address to work out which area you live in, OR telephone the Local Authority and ask them.

    If it's not the Local Authority I'd still contact the Councillor for advice.

  • Hello Nita,who is this moron who treats you so appallingly?I suggest getting in touch with your MP who should take up the case for you.I would probably be in prison now as I would stupidly lose my rag with somebody like that.I wish you the very best of luck.Regards D.

  • If it is nhs rather than local authority- write to your GP explaining it all, asking them to discuss with the CCG. This will get the CCG to look into your case thoroughly. Good luck!

  • If it is nhs rather than local authority- write to your GP explaining it all, asking them to discuss with the CCG. This will get the CCG to look into your case thoroughly. Good luck!

  • don't give up take it further that is appaling

  • That is an appalling way to treat anyone, let alone someone who obviously has a great deal of stress in their life.

    Don't give up on fight for your son.

    Write to your MP and get him to help you.

  • Thank you to everyone for advice and comments. I am struggling a bit to carry on. I am trying to resolve the issue since 2011.

  • Good heavens i had no idea you had been fighting this for as long as that.

    I wish you good luck and hope it is resolved soon.