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Continuing Care Meeting banned from taking notes

Discussion in 'I care for a person with dementia' started by rageineden, Dec 21, 2015.

  1. rageineden

    rageineden Registered User

    Dec 14, 2015
    20
    #1 rageineden, Dec 21, 2015
    Last edited by a moderator: Jan 13, 2016
    We have a MDT meeting tomorrow morning for continuing care for our Father/Father in Law. We emailed the coordinator/chair of the meeting 7 days ago saying we wanting to bring a professional note taker with us or to record the meeting.

    She queried why we wanted to do this and we sent a reply explaining why. We heard nothing so 5 days ago emailed her again saying as we had to book this person we were going ahead with this as we had not had a reply back.

    This afternoon less than 20 hours before the meeting we got an email from the Head of Commissioning at CCG saying we would not be allowed to have the note taker present nor could we record the meeting.

    Firstly why would we not be able to document the meeting? Cant find anything in the national framework/decision support tool/NHS England operating model for continuing care saying this is not possible.

    Secondly why did the big boss contact us not the coordinator/chair of the meeting?

    Is it because all along the process we have complained about documents being falsified?
     
  2. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,927
    Male
    Bristol
    Something not quite right there rageineden. I always take a few notes and check when we will get a written report, for our records as much as anything.
     
  3. jan.s

    jan.s Registered User

    Sep 20, 2011
    7,352
    I have always taken a friend with me to every meeting and she has taken notes. I am not sure, but I don't think they can stop you. If they are prepared to discuss the issues with you, you are surely entitled to take notes so you remember later on what was actually said.

    I also believe it's the same with recording, but then the recording cannot be used as evidence against them without their permission (yeah, they're likely to give that !)

    I hope your meeting goes well.
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    I agree although our Trust record all meetings so I don't understand why they wouldn't let you, sounds fishy to me. I would also take someone with me who would take notes of important points or do it myself (and keep stopping them to say 'can i just clarify that point' or would you mind repeating that). How strange!! Good luck with the meeting
     
  5. rageineden

    rageineden Registered User

    Dec 14, 2015
    20
    All along they have attempted to make the process as stressful as possible. They ignore all the falsifying of records and they ignore all the procedural breaches as well. It looks as if they make it as difficult as possible in the hope you give up. Unfortunately they picked the wrong people for that to happen.
     
  6. tatty

    tatty Registered User

    Oct 14, 2015
    61
    I work as an adviser for a support sevice for parents, children and young adults with Special needs in education, I am often at meetings as a parental supporter and I takenotes for them as part of that support.Schools, govenors and other professionals always seem nervous of my impartial note taking BUT it is vital to rememeber what is said when and what is agreed; as reports from parents of ludicrous offensive and sometimes bullying behaviour along with mis information occurs when there is no 3rd party . We as a service find it keeps people on their toes follwing the law/gudance and responable behaviour for al involved.

    If they won't allow reording insist on making notes your self and as Fizzie says ask them to go slower repeat and identify themselves as necessary.If we are in a difficult meeing I will read back all agreed actions and get those present to sign agreeemnet before leaving , if they won't , ask why and record that too.

    Alternatively I know its short notice but could anyone from Alzheimers society, Age concern attend with you and note take? or a friend /other relative, if it is the credentials or who the note taker is you wish to bring with you that is the sticking point?

    Quote legislation if theer is any (sorry I Don't know myself) as that often has a positive effect.

    Cynical me thinks they deliberately waited until the 11th hour so you would find it difficult to find suitable support or get legal advice, how would they feel if you bought legal represntation with you, I wonder?
     
  7. Beetroot

    Beetroot Registered User

    Aug 19, 2015
    363
    It may be an idea to have a word with the Citizen's Advice, or Age UK. I can just about stretch a point to recording, but not to note taking. Is this only a someone else to take notes? Or are they planning to stop you doing so yourself? If the latter, you ignore it and take notes and, if they gabble away, tell them to give you time to note down whatever it is you want to note. Notes made at the time of an event are evidence. It's important you do write it down there and then, not when you get home.
     
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    If they won't allow reording insist on making notes your self and as Fizzie says ask them to go slower repeat and identify themselves as necessary.If we are in a difficult meeing I will read back all agreed actions and get those present to sign agreeemnet before leaving , if they won't , ask why and record that too


    Brilliant Tatty

    I also draw a little stickman pic for myself so that when they identify themselves i can stick them round the table but I always ask them who they are again. It is haard work making them slow down but they do have to do it
     
  9. jan.s

    jan.s Registered User

    Sep 20, 2011
    7,352
    Having dug around a little on the internet, it seems that it is not illegal to either take notes or make a recording at a personal meeting, however such notes/recording would only be for your own personal use,

    I am sure someone will come along soon with more information.
     
  10. Maggie42

    Maggie42 Registered User

    Mar 7, 2011
    120
    East Midlands
    I always take notes at meetings. I haven't ever received minutes so it's my only record. Good luck.Regards Maggie
     
  11. middlemiss

    middlemiss Registered User

    Apr 27, 2014
    24
    I undertake CHC assessments in residential/nursing care homes, I would never inform a carer or other professional that they could not take notes! Perhaps the 'professional note taker' not being a family member may raise confidentiality issues? Other than that I cannot understand why. It is very difficult at times to participate and make notes at the same time whilst trying to get your head around what is going on at a very emotional time for family carers. The assessments are 'evidence based' and examples should be given to substantiate the outcome of each category, whether these be positive ones or areas where the person requires more support. It may be that family carers need to read their notes later on - after the meeting, or perhaps share with others who for example have LPA who cannot attend, there are many reasons why family carers should be allowed to take notes.
    I suggest that after the introductions have been made, and you write down those present, you ask if there are any objections to you taking notes, stating why and who will have access to them. Has your father/father in law had a MCA and can he give permission for you to take notes? Apologies, I don't know your situation. Have you got LPA?
    Lastly, no professional should be worried about being challenged - its important in order for us to learn from our mistakes!
    Good luck - I hope it goes well for you.
     
  12. rageineden

    rageineden Registered User

    Dec 14, 2015
    20
    Thanks for all the messages back. I will let you know this afternoon how it went. I agree it can be seen/it is a tactic so that you cannot concentrate on what is going on as you are busy taking notes.

    We have LPA but these are ignored on every occasion by the hospital and CCG.

    Anyway off to fight the good fight!
     
  13. Boldredrosie

    Boldredrosie Registered User

    Mar 13, 2012
    244
    Good luck rageineden. Let us all know how the meeting goes please.
     
  14. rageineden

    rageineden Registered User

    Dec 14, 2015
    20
    #14 rageineden, Dec 23, 2015
    Last edited by a moderator: Jan 13, 2016
    MDT Meeting result

    Well as expected we were refused continuing care at yesterdays meeting. We knew going in it was already predetermined so i guess we were not that surprised. We scored 4 high 4 moderate 3 low (they downgraded our 2 severe unsurprisingly).

    Amazing to see people who really dont know our relative and have only met him a few times in a hospital setting,telling us how he would cope at home. It felt as if none of them wanted to give a severe/high score as it might affect them later.

    Despite that score and all the evidence we provided that they had not bothered to get themselves, plus consultants letter/GP letter and Social worker all confirming our case we still lost.

    They also admitted that the 'quality' of record keeping at the hospital had not been right ie: falsified as we had raised all along.But they still used this anyway!

    Interestingly you might remember the not taking notes saga. We turned up to find a lead commissioner from the CCG was there to ensure procedures were followed correctly. When we asked was this normal we were told because we had complained so much up front about the flawed/illegal process, they felt he should be present, but not appropriate for us to have a note taker!

    He also said he would adjudicate any appeals. When we questioned this saying how could he conduct an independant appeal having been at the meeting, we were told we could not delay the meeting any further.

    We were aksed to leave the meeting while they deliberated and told we would be called back in once the decision had been made. Instead the coordinator called us saying everyone had gone and that we were not successful.

    When we asked what happens next she said it goes to panel on 30th December but it will not be overturned.

    She then told us our relative is fit for discharge and to arrange this with the hospital. When we said what is happening with the care package for him we were told speak to the social worker directly. Unfortunately the social worker had done a runner so he did not have to face us.

    We have not been given any other detail from the coordinator so we have no idea how they came to the decision.

    We later spoke to the social worker who told us he did not know what would happen next. He said the meeting recommendation is for a care home placement, despite considerable evidence that our relative deteriorates to such a level that twice in two weeks he was admitted to hospital from a care home due to severe dehydration, and that this had happened every time he goes into a institutionalised environment.

    So we are now left in limbo over Xmas as the social worker now has to go to another council panel asking for a night sitter (which is all we wanted in the first place).

    Anyway we went back to the meeting room and bumped into the coordinator/lead commissioner and amazingly she again confirmed the CCG policy which flies in the face of the national framework.

    If you win continuing care in MODERATOR NOTE: name removed under NO circumstances will you be offered care at home! You will only be offered a care home place. This policy is we were told unpublished and not available for the public to look at!

    We are going to take this further and will not give in to illegal practices.

    Dont know if i can find any technical/procedural flaws i can throw at them prior to the 30 December panel?

    I have to say to anyone going through this you will need to be very very strong to get through it all, at every stage the CCG/NHS/Local Authority will lie to you, will act illegally, will break all procedures and will attempt to exclude you from as much of the process as possible. It is incredibly stressfull and takes over your life, but you and your relative do have rights!

    Onwards and upwards!
     
  15. jan.s

    jan.s Registered User

    Sep 20, 2011
    7,352
    I'm sorry that things didn't go well for you, although it went as you had expected. Sadly, I think the authorities are doing everything in their powers to prevent paying CHC except in the most clear cut cases (even then I think there are struggles). I know several people who have had their funding removed because they no longer meet the criteria.
     
  16. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,927
    Male
    Bristol
    #16 nae sporran, Dec 23, 2015
    Last edited: Dec 23, 2015
    Not a lot I can say to help or advise, as most of my fights with Social Services and the NHS have been a lot more straightforward and helpful, if not always entirely successful. But, for what it is worth can i wish you success in your appeal and hope you can afford a decent lawyer.
     
  17. rageineden

    rageineden Registered User

    Dec 14, 2015
    20
    After our sham meeting we still don't have anything in writing as to what the actual decision was and what their recommended care plan is. The council social worker has now emailed me to say they will only offer an hours care visit during the night lasting 30 minutes.

    Not sure how this offer was arrived at as we have not got that documentation yet.

    Interestingly now the process is finished his care records at hospital are now being accurately completed. He has gone from the most perfect patient ever to how we detailed his condition, aggressive/up all night/uncooperative etc. To the level that on Xmas day the nurse rang us to complain about his behavior!

    Call me a cynic......but i thought it was not about the money!
     

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