1. chip

    chip Registered User

    Jul 19, 2005
    I am so so angry. I went to see my husband today. While i was there i asked about respite. Was told it has to go through the consultant, I said no problem. Then the bombshell hit "It will be discused at the meeting" i thought ward meeting. The meeting tomorrow with social services. Hospital social Services ? wrong again. Its a meeting with the hospital staff consultant and the social worker we have. Yes i had no idea there was a meeting. Who arranged it? Why was i not told? Whats it about? Why did the Social Worker not tell me? Why did the hospital not tell me? I have the welfare power of attorney as well. WHY HAS A MEETING BEEN ARRANGED BEHIND MY BACK ? All i know is it is tomorrow morning as it was slipped out. I don't think this is right at all. Should i be notified to every meeting about my husband? Should a meeting go ahead without me or my husbands advocacy there? What should i do about it? For all i know the meeting could be first thing tomorrow morning.
  2. connie

    connie Registered User

    Mar 7, 2004
    hip, don't quite know what to say. Can imagine your hurt and anger.

    What is the usual proceedure, do you know? Have you told them you wish to be involved with every aspect of your husbands care.

    Obviously this is something you need to get sorted out, to your own satisfaction.
    Sorry not to be of any help, but send you a special hug.

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  3. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Chip
    the SW is suposed to be on your side fighting your corner.
    I talk to our SW and she will go away and consult with her manager or as in the case that we are looking at, Peg going into care,our CPN.
    Could it be that this is what is happening?
    That your SW will be coming back to you with the results.
    Can't see where the consultant fits in,the finance for respite will come from social services!!
    Hope this is of some help to you,let us know how you get on
  4. Gwenno

    Gwenno Registered User

    Jun 18, 2006
    Hello Chip

    I had a similar situation about a month ago. I received a phone call from the Assistant Manager of the Care Home at 7.40 on a Monday morning informing me that the Consultant who we had been waiting to see for 12 months was coming to Assess my husband at 9.30 that morning. They assured me that I would be given a written report of what was said etc. as I live about 45 minutes away from the Home and as I was still asleep at the time she rang I thought that I would not be able to attend. However, I had to make a quick decision, and decided to go. I told them that under no circumstances were they to assess my husband without my being present. They of course said that would be fine, and off I went. Unfortunately there was an accident on the road and I had to follow a detour. Eventually I got there, and was about 15 minutes late. The Consultant had agreed to wait, and all went smoothly. He was a very nice man.

    I did feel extremely angry that I had not been told, and of course they would have notification at least a week ahead, They gave me all sort of excuses and an apology of sorts, and a few lies along the way. If I was in your position I would phone up first thing, tell them you want to be there, and say as I did that they were not to carry on without you.

    Hope all goes well for you.

  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Chip,

    When there were any meetings concerning my mother, I was invited every time. I would take Gwenno`s advice and phone first thing in the morning and tell them you will attend the meeting and don`t want it to begin without you.
  6. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    Reading your post got me real angry. When will they ever learn when dealing with a patient which has AD the first think to remember they should never be considered as a lone person? The best form of treatment is inclusive, involving both patient and carer, more so when it comes to husband and wife.

    By excluding one without the other from 'All' aspects of dealings, be it medication, planning, meetings or care, creates more problems and expence for everyone.

    It's just plain common sense to include a husband or wife as they know their partner better than onyone. Why cause more grief for both?

    I decided not to conform to the norm, because I found it too much of an added strain dealing with all the different bodies. Since I reformed and did things my way, life for both of us is so much more peaceful. Now I'm in control and when Jean requires medical help, like her last seizures a few months back, the hospital staff accept us as a package.
    Could it be a man thing or maybe I'm no longer prepared to put up with any more rubbish. Fight for your loved one's best intrest, put your foot down with a firm hand. Padraig
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    never were truer words spoken!
  8. CraigC

    CraigC Registered User

    Mar 21, 2003
    Hi Chip,

    Makes me angry too, but as Norman says there may be a legitimate reason for the meeting. The social worker must work on the patient's/carers behalf and these situation are often down to bad communication. Give them a call and be straight about your concerns is my advice.

    If you don't get the right answers you can always ask for their complaints procedure or mention that you would like to escallate this and talk to their manager/make a formal complaint.


    Not sure if this falls under the access to medical records act, but you will not be the first to feel excluded from such important decisions. It is very reasonable to ask for a bit of clarity in a case like this.

    Good luck
  9. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    this sounds to me very much like an MDT (multi-disciplinary team) meeting. It seems to be a bit of a grey area as to whether family are supposed to be involved or invited to be in involved in these meetings. Although there should not normally be any reason why they could not be involved, except in exceptional cases.
  10. chip

    chip Registered User

    Jul 19, 2005
    Thanks all got the advocacy onto it. Guess what she has been trying to contact SW and got no replies but SW can go to hospital meeting no problem. I now have no trust in SW at all. I also have a meeting with the local carers help place. I have also printed out from this site under the factsheets the continuing NHS care and see its all in England no cases in Scotland in Scotland Social Services make you pay for care. I also have to keep telling them that he is younger and doesnt get AA and free nursing care we are made to pay for it. I've to phone the ward this afternoon will phone shortly and let you all know.
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Chip have you seen this? NHS MEL (1996) 22, NHS Responsibility for Continuing Health Care (this is the scottish version) According to Ageconcern scotland this has NOT been updated even after the couglan decision.

  12. chip

    chip Registered User

    Jul 19, 2005
    Thank jennifer i hadn't seen it. Even on it it says i should have been there. Also my husband is unstable at the moment and getting worse. I've printed it out as well. Anyway got the phone call looks like we are being offered what we got offered before and wasn't suitable. Got told see you have had crisis team in before i said well yes 1 night and never again that was enough as my son and i were kept awake all night by the carer going up and down the stairs all night checking on him even though there was a baby moniter and then the carer got my husband up at 6 in the morning carer got (exhused ) me up and said thats him up i'm away. I had to get up wash dress etc him. My son and i had about 1 hr sleep. It wasn't taken into consideration there was family in the house as well. When they turned up the next evening i wouldnt let the different carer into the house we were too exhaused and tired we all went to bed early as we were too tired from having the crisis team carer in, and this is what i've to be offered ! What we need is the direct payments upped to keep the same carer we have coming. I am being dictated to and what is available not what is needed they are putting me into a corner and offering unsuitable help.

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